What It's All About

The Beginning

2011-05-01T18:41:00.000-04:00

I've come to realize that there are a LOT of people in this world (sadly) who know nothing about Autism or what it is. While it may not be my job to educate them on what it is, it's my job to love and protect Thomas and do the best I can for him. If that means educating a few people along the way....then so be it! So I thought I'd write a few series of blogs, maybe one a day or a few a day depending on time starting from the beginning. Everything is based on my belief and what holds true for Thomas and what we have seen. Granted his situation is different having a twin, all Autistic children are different and he is unique within himself. So I'll start with the day he was born:

January 30, 2006: This was 5 weeks before their due date and they were scheduled for a c-section on Valentines Day. I however woke up that morning with a numb face, some slight drooling, bad headache and it wasn't getting any better. We arrived at Pitt Memorial Hospital about 35-40 minutes away from my home to meet my Dr who was going to just check me out. Of course, my BP was slightly elevated so I had to stay. When the labs were redrawn apparently I was in some trouble and so it was go time. At 10:32 and 10:34 PM Thomas and his twin sister were born. Thomas was first, but he was taken away without either of us seeing him. They bagged him immediately and took him to the NICU where he stayed for 22 days. In the NICU he was stuck numerous times with IV's where he got fluids and antibiotics. He had IV's in his hands, feet and even in his little head. He weighed all of 5lbs (large for twins) but he was so sick even from day one.

We brought his twin sister home on Valentines Day. Not long after I got her home the NICU called to tell me that Thomas had spiked a fever and no one knew why. They informed me that they needed my consent to do a spinal tap. I asked if I should come back to the hospital (45 minutes away). They told me they wouldn't allow me in the room with him and that the Doctor would call after it was performed. I sat and cried for probably a good hour, part of me felt guilty that we had brought his sister all the way home. If we had just waited a little longer I would have at least still been at the hospital with him when this was done. He had a Staph infection from changing the IV's and drawing blood so many times. When he finally got to come home Thomas had just come off of room air, but was breathing well on his own.

This was just the beginning of his story and there is much, much more. Many people believe that vaccinations have a lot to do with Autism. I for one don't believe that because I had both Thomas and his sister vaccinated at the same time, sometimes at the very same time and she is perfectly healthy. Neither she nor Thomas ever had a side effect from vaccinations. Instead I believe that it is genetic and that he also had such a difficult delivery, lost a lot of oxygen and struggled those first few days. I think that all of those things played a big role in who he is today. Would I have changed a thing about going to the hospital knowing what I know now? I don't know, I can't say. Thomas is who he is, I wouldn't change that or him. If keeping all of the bad things away meant going back and risking my own health and life, then I'd go back. But we hope for the best and often prepare for the worst. This is just the beginning and the best is yet to come!

All about Thomas

2011-04-19T11:49:00.000-04:00

I think I've decided that from here on out all blogs will just be about Thomas and the journey we are on. Can I get an AMEN!

So I went and deleted some older ones, left some really old ones that had some previous meaning for me, but from here on out, it's all about him, I love you T, this is for you!

Love
MOM

What's Right For Him?

2011-04-19T09:36:00.000-04:00

Well it's been a week already and it's only Tuesday! Do you ever have weeks like those. I'm going to say that this week actually started on Saturday because we had a destructive tornado rip through our town. It flipped cars, trucks, tractor trailers. It tore down buildings and picked up one and threw it 40 yards away. It snapped trees, uprooted others and tore down the power lines. It went up the street that runs parallel to my road and was pretty much a block away. I was in South Carolina when this happen, while my family was here, needless to say my heart stopped as soon as I found out. So now there are many efforts being made to clean up the tragic mess.

This Friday I have to take Thomas to Duke, this is an appointment we have known about for months but I've dreaded the entire time. He has a mole on his ring finger that has changed in color, size and shape. His regular doctor here has shown some concern in the way it looks telling me that it could possibly be something that could turn into Melanoma and should be checked by this Dr at Duke. This poor kid has suffered with something since the day he was born and I fear for him that there is a pattern forming. I just want him to be ok, of course and want what is best for him. For anyone that does keep up with this, I'll do my best to let you know what the outcome is of his hand after Friday.

We met last week with the Case Manager who was great, very nice and Thomas talked a tiny bit to her before completely shutting down. She signed him up for the CAP program and we will go before the Beacon Center in about a month or so to present his case. All of this I knew, but it just seemed different when doing it and filling out the questionnaire on my own son. I had to answer some questions that I really did have to think about and she really did have to tell me that I had to separate my heart from it. For instance is there the possibility of him ever being institutionalized (it was worded slightly different)... Well yes if he doesn't receive any services at all from anywhere or we aren't able to pay for anything for him, then yes the possibility is there. The only reason I can say that is because Thomas can become violent with tantrums, throwing, hitting, etc. Then there is a safety issue not only for him but for his brother and his twin sister. I'm not worried about my husband or myself, but I do have to think about my other two children as well as Thomas. What's right for all of them? What's right for him?? I want him here with us, ALWAYS! I told her I didn't think I could ever, ever put him anywhere. It would have to be the most extreme of circumstances, but I knew what she meant by separating my heart from it. If he never gets any services, things would be bad, it would only get worse and then that question could be very real. It made me so sad to think about.

What's right for Thomas? Are we living in the best place for him? I don't know, it seems to me that he gets judged a lot here. It's probably like that everywhere. I'm not sure that the services are the best here, then again they may be like this everywhere. Neither my husband or myself make enough money to be able to pay for all of the things that he NEEDS and I do mean truly needs to help him. He needs sensory items at home, he needs therapy and we've already seen insurance deny that once. We would love to see him get an Autism Assistance Dog. All of these things costing thousands of dollars. How do people do it, especially with multiple children?? I wonder if public school is the best option for him next year, I worry about him. Who will look out for him while I'm not there? They don't know him yet, so they don't know little quirks, tics, etc. Is it easier to keep him at home and homeschool him? Don't get me wrong, I'm not saying these are necessarily things I'm going to do, just things that daily go through my mind depending on what kind of "thomas" day we are having.

So how do I know what's right for him, I do the best I can. I pray often. I ask God for guidance, for good days, for the right people in our path to help us find out what is available. I'm hoping we are living in the right community for him, I hope that I do enough in the community to help educate and make people aware of Autism so that when he is out in the community people will know who he is and they won't look at him differently but instead truly see him. I hope that my husband and I can somehow pull together to do enough for him where insurance and other resources don't kick in that he gets what he needs. Most of all I hope all three of my kids are happy, because I know none of this is easy and all we can do is take it a day at the time and do the best we can.

Thomas is who he is and we love him for every ounce of that person! I wouldn't change a thing about him, about how our life has been. It is very stressful and I do still feel like crying at times, but I wouldn't trade him for anything else in this world, he has blessed me more than he will ever know.

Things are going to change

2011-04-07T10:48:00.000-04:00

Things with Thomas are about to change. Hopefully everything will be all for good changes and he will be able to handle all of these changes. Anyone who knows anything about Autism and Aspergers knows that it will be difficult for him to accept change, but I'm willing to work with him because I think these changes are going to be good for him and for all of us!

First, he is getting a case manager. This person will be someone who can go with me into the schools when I need her, she can help me to get him services he needs and navigate through the system for things I'm unsure about. She can go to Dr's appointments if I need her to, etc. I am really very excited about having her come in our home and meet Thomas and I so hope that he is receptive to her. I have heard nothing but good things about her and just our first conversation she seemed very nice and very knowledgeable.

We are going to try to get Thomas CAP services. My only concern here is the fact that he is a twin. This is, of course, a unique situation for them because for the last 5 years they have been nearly inseparable. So I fear that this would be a huge change for him to go off with a worker and Emma to always be "out of the loop" so to say, but also I think it will be very good for both of them. It's always hard to know when you are doing the right thing, but of course all of these things are trial and error with him to know what will work best to help him for the long haul!

I am desperately trying to get him SSI which if anyone out there knows anything at all about that, it's a very long process. So far they have put off my appointment 3 times. Wasn't too happy about that, but it is what it is.

I have also started the process of moving his sensory therapy from Raleigh to here in Wilson where we live. This will be much better next year when he starts Kindergarten and hopefully we will not have to pull him out of school during the day. Routine and stability are what he needs and this will be a good change for him.

Finally, for the last 9 months or so we have really wanted to get Thomas an Autism Dog. You can read about them online. The down side is the cost. They are thousands of dollars. The upside is that, just like a seeing eye dog or dog for epilepsy, he can take the dog everywhere he goes. Thomas is a runner and he has meltdowns so the dog would be able to assist him with that, keep him from darting out in traffic or parking lots, etc. The dog could potentially go to school with him as well and I've read stories about that which I find fascinating.

I'm looking for suggestions and help from anyone who has any ideas or has been through any of this already. Most of this is new to us and even though it's been a year already since he was diagnosed, every day is different and we are still learning and on this journey for lifetime! I wouldn't change a thing about my Thomas. I love him just the way he is.

The Vacation From ......

2011-02-28T14:19:00.002-05:00

Hello Dolly! This blog is long overdue, but with some very chaotic moments happening in our lives recently it has taken me a while to be able to sit down and write it. Anyone who knows me knows that I volunteer with scouts (cubs and girls), devote time to Autism and the Autism Society, work two part time jobs, then of course there is my family and children so there is homework extra activities, doctors visits.... the list goes on and it doesn't end. Someone mentioned something to me the other day that I had forgotten and I really hadn't forgotten but it is on my list of "to do" and just hasn't been checked off yet. Sadly some of the things that I do work or volunteer in have gone south and will have to be delegated elsewhere... but that's another blog and another day or maybe not at all.

Now, my trip that was supposed to be a great vacation and birthday extravaganza for our kids all rolled into one. If you know my husband (lucky you!) you also know that getting him to take time off of work is like pulling teeth. So this was an accomplishment on my part. I had also gotten all of the outside activities, my own job and his to all line up for the exact same week so we could be gone. I was thrilled, excited and we were all more than ready to be gone for a week. We really needed this!!

We left on a Friday afternoon and drove half way. This was better for Thomas since the drive was so long. The first night was not so bad. My daughter had started coughing a bit, but we thought perhaps it was the change in the weather and it was raining quite a bit. By Saturday she was coughing more and it was raining and dreary. I was giving her things like Sudafed and Motrin and hoping that it was just the change in the weather, I should mention that when we got to Florida the ground there was covered in pollen. We were all quite shocked! By Sunday evening she was running a fever and to our knowledge there was no immediate care close by. Lucky for me, a doctor here called her in some medicine on Monday and we were able to get her an antibiotic and cough syrup at the CVS in Florida for a sinus infection. In about 24 hours she was much better and her fever was gone! Little did I know that by Monday afternoon my husband would be down though.....

Monday afternoon we were eating at a restaurant and my husband who had been feeling "funny" all day was feeling worse. We thought perhaps he had a stomach virus. He went back to the room and was sick the rest of the day. That evening the children and I (me of course an emotional wreck) went to the front desk of our hotel and asked for a separate room so the rest of us would not get sick. By this time I'm fighting back the tears and I think they felt sorry for me. Luckily they were able to give us another room in the same building on the bottom floor. We walked the long walk to our building (30 some buildings) and got in our new room. I went up to where my husband was to get our bags and clothes, medicine for Thomas, etc. When I picked up the bag for Thomas his medicine fell out and busted all over the concrete. I immediately began to cry, there was nothing else I could do. I took several trips and got everything in our room, got everyone bathed and in the bed.

The next day we went out, just the 4 of us because my husband was still sick. We went to breakfast and I went and got Thomas his new medicine that I broke. I took the kids out by myself and we did the very best that we could! Every part of my body hurt, we encountered some very rude people when it came to Thomas' guest assistance pass or when he would tantrum in the middle of a park. I found myself in tears on a ride a few times, especially if it was a ride that was dark so the kids wouldn't see.... I tried very hard for the stress I was feeling to not be put on them. I wanted them to have a good time no matter what. I should mention that on this day.... I dropped my Blackberry on the concrete... yes it still worked!

On Wednesday night my husband finally was able to go to the onside immediate care that the front desk was able to tell me about. The verdict there was that he most likely had food poisoning. He was miserable, I was miserable, the kids as far as I could tell were still enjoying themselves! I was really trying!! My oldest son had some disappointments, some things I just couldn't do by myself with all 3 of them. I felt terrible for him. It's difficult to be the older sibling of an Autistic brother, and even harder when often that means that you have to give something up. I'm hoping that soon we can make that up to him!

Late Wednesday afternoon my husband was able to rejoin us as he was finally feeling better. I was finally able to breathe again and we were all able to sleep that night. My husband slept in the other room one more night just to be sure. Thursday morning he came out with us and the day went fairly well, until Thomas went into a full blown asthma attack that day and all we had were his inhalers and no nebulizer.

Friday was our LAST day there and it went pretty much like this, Thomas had on and off asthma attacks all day everywhere we went. I dropped my blackberry on the concrete again. The kids had a blast because they got to fight Darth Vader, which was finally something they had REALLY wanted to do. I cried a river.

Saturday we packed up to go home and my husband fell off the back of the car! By now I knew that Disney was NOT the most magical place on earth and certainly not the place for us to be anymore. I gladly checked out and told my husband to hit the road and make it a days drive, we were getting home in ONE day!!

If anyone has ever questioned the fact that I'm a strong person or determined this should be enough to prove that I am. Give me a situation and I don't back down, but push through. Just like with Thomas and his Autism, just like with the medical obstacles thrown at me, just like the many other situations I've been faced with... I don't back down but P.U.S.H, pray until something happens!

New Year...New Trials...

2011-01-04T10:41:00.000-05:00

What made me think that a new year would mean that anything would be any different? I suppose I thought that starting off 2011 would mean a fresh start for our household. Perhaps we would put 2010 behind us and get a new perspective. Wrong!!!!

Just before the New Year Thomas had his first Dr's appointment with his new family doctor. We discussed his Aspergers, Asthma and Respiratory condition. All of which she seemed very comfortable with and with treating. We scheduled an appointment for this month to get his hearing rechecked to make sure that he doesn't have any hearing loss. I know there is a possibility that he does and I'm prepared to deal with that. If that's one thing we are looking at then it is probably minor and he can certainly live with it. I just hate to keep adding to the mounds of issues that seem to pile up for this (almost) 5 year old child.

Then as she was doing his physical exam she noticed the mole that has always been on his right ring finger. She asked about it and I explained that it's been there since birth. She asked me about the size and shape as well as the color. I told her that I hadn't really taken much notice because like I said it was part of him and something that had just always been there. She suggested that we go to Duke to see a Pediatric Dermatologist to check out the mole. The mole is rather dark and asymmetrical. It has also gotten much larger, the edges are jagged. She said to me that there is the possibility of it later turning into Melanoma and should be taken care of immediately. I'm not sure I really had a response for her other than "OK". The first available appointment at Duke is in April. We've had one cancer scare already in the last several months and I'm not prepared to have one with my 5 year old. I'm not sure how to take it that he could possibly have something like this on his hand so I'm trying to just not think about it. However....as any parent would know that's nearly next to impossible to do.

So this is how the New Year has started here and I'm just trying to remember that everything happens for a reason. I'm not meant to know what the reason is, but to just follow the plan

Friendship is Love

2010-11-30T10:02:00.000-05:00

Someone told me the other day that I hadn't blogged in a while which was true. While I've had plenty to write about, that seemed to be the problem...there was too much going on. I've had some time now and things are settling back down (believe it or not) and I can gather some thoughts together. It's been a roller coaster of emotions, fear, patience, waiting and so many other things for 5 weeks straight. For 5 weeks I went with a lump in my breast that I was told could have been as simple as a cyst but possibly cancer and it was not known what it was. My mammogram showed a second spot as well and it was determined that the first spot would be removed because it was "questionable" and the second spot would be "watched". For 5 weeks I had to talk to my husband about the possibility of what was happening when either of us could talk about it, what we were going to tell our children, what we were going to tell our oldest about the surgery, etc.

The day of the surgery came and I'm still holding out Faith that she will remove it and tell us that everything is simply fine. She comes out and tells my husband that ....I've never seen anything like that before and I don't know what it is, I'll send it for pathology. So it's at this point that we begin to wonder if something could be wrong, maybe it wasn't a simple cyst after all. For 5 days we worried, I cried, I didn't sleep and I waited and waited and waited. Finally getting a phone call that in fact it was not cancer but Necrosis which can mimic a malignant tumor. Nothing else needed to be done except to heal from where she did the surgery and watch the other spot.

Those were almost the scariest 5 days of my entire life, next to nearly losing my twins. I can't explain the feeling of someone telling you they don't know. The worst part about that was that while my husband and I were trying to deal with this and I am healing we had a couple of visitors, one friend brought dinner but none of our friends called us. We heard from our family, my preacher went to the hospital and so did a good friend. It really made the two of us wonder.....

Maybe it's me, or my husband or our children. Maybe we don't do enough for other people or our friends, maybe we have expected too much, not given enough of our time. I'm not sure the reason.

I have to end this by saying that I am thankful to the people we did hear from and to our scouting families who spoke to Mike. It was so thoughtful even for those who didn't know us well to ask him how we were doing. We appreciated that more than they know. To quote two things I read on Facebook today: "Friendship is showing love" and "be thankful for what we have" That sums up a lot in a small amount of words.

AHHHHH

2010-10-20T09:48:00.001-04:00

That's the sound of me screaming! I'm sure many of you can share in my frustration and anxiety. Let me start by saying that for me (I can only speak for myself) writing, blogging, journaling, any of these is a great release for myself. Some people choose to keep a journal and write all of their thoughts down in it. Others write books and I choose to write here, on my computer and let other people read it because it doesn't bother me and I truly do hope that it helps someone else. Perhaps we have something in common, going through something similar or I can help you and you can help me.... or I can just make you laugh at some of the things that go on in my life. My kids are funny, funny things happen, etc.

So with all of that out of the way, my mammogram report is still not back. So will you join me with the screaming because I would seriously go in the front yard right about now and just sit down in the grass and scream!! WHAT??!!!! Ok so several things come to mind... did they lose it? Are they lazy? Is it bad?? What the heck people...... My appointment with the surgeon is next Thursday. You know the saying, hurry up and wait. Yes that's me, dying for next Thursday to just get here. I think I may go stir crazy. Days like today when the house is empty, I'm needing to do some cleaning (blah) and I hear "toot and puddle" on the TV. You can laugh, I should be!

I find myself at odd times when I feel like I just may not be able to breathe. I find myself sitting down and not knowing how I should feel about all of this. I don't really have a feeling, good or bad, just scared. I find myself crying at times. Contrary to popular belief.... I'm going by myself next week too.... Yes yes I know. But I want to go alone. Don't throw anything, I can't run that fast! I do though, my son needs to go to OT and so my husband is taking him (that's important) and then someone needs to stay with his sister and that's my mom and so I'm taking myself. I'm fine, everything will be fine and the Dr will be there. If I need someone that day, I'll call someone. Sometimes it's better to not have your family see you be a complete basket case all of the time.

Ok so moving completely away from this topic, but this is just something I have to get off of my chest because like I said this is my place to be.... me. Last night we said Goodbye to a wonderful person. It was hard she fought with dignity and spirit and she will be missed. As most people know I don't see my biological father or that side of the family..... I really have no idea what I did. Well my sister was at the funeral home last night. She saw me, looked right at me several times and each time turned her head. She never spoke, never raised her hand to wave. I just would love to know what I could have done to make them hate me so much, that even there at that moment she wouldn't even speak.

I just have to say with everything going on, the things with Thomas, the medical stuff with me (all the years), losing friends to cancer, car accidents, etc, losing family members too, it's just nice to know where I am at this exact moment. I'm walking with God every step of the way, growing more and more as a Christian and learning more than I ever thought possible. I'm involved in things that I never thought I could do or maybe would want to do, but am having the best time every single week. My kids are happy and for the most part healthy. My husband and I are good and it's been 11 years which is amazing to me as to where that time went. I have a wonderful mother and dad who live very close by and help out so much when I need them to. I have great friends that I can count on. Even with bumps in the road, sad times and hurtful things, life is good and there is so much to be thankful for.....even when I want to scream!

Where to start?

2010-10-18T16:27:00.000-04:00

I'm not sure if I know where to begin because I'm so full of so many emotions, but I feel the need to write because it's often the best thing for me. Right now I feel sad, scared, angry, terrified, numb, frustrated. Just so many things and often I don't even know which one I am at the present moment. This whole thing started last week and originally I had decided that I would just not tell anyone except for a couple of people that I had to tell. However, I'm not good at hiding my emotions (not a bad thing) and I feel very strongly about this because I think what I happen to be going through is extremely important. Just like with Thomas and his Autism, sometimes you just have to stand up for what you think is important!

I'll just start at the beginning. Last Wednesday evening while going to bed I happen to do a self breast exam, something I tend to do quite often because there is a history of breast cancer on both sides of my family that I'm aware of. I was quite shocked to actually find a lump in my left breast. I was so shocked that I literally shook my head, rolled over and felt again. I wasn't mistaken and thought I was going to be sick. In all of the years that my GYN has preached to me about checking my own breasts and the fact that I've never felt anything and neither has she, I was floored.

I got up Thursday morning and let my mother know. She thought I should have it checked. I couldn't bring myself to tell my husband. By now, I was completely terrified. I finally told him before he left for work. I drove Thomas to his OT appointment an hour away and drove back home before going to the Dr to have it checked out. The Dr could feel the same thing I had felt, she said that they would have it checked ASAP. She said I needed to have a mammogram and an ultrasound and they would be sending me over to the hospital. By now I'm thinking what the heck is this thing? She assured me that if it was nothing she would let me know, she wouldn't let it linger and if there was anything to be concerned about they would send me to the surgeon. I left in tears. I was scared.

My appointment was the next morning and I had to have the mammogram first at one place and then go over to the hospital for the U/S. My husband went with me. I didn't really talk much, didn't have much to say. The lady doing the mammogram was nice, she tried to make me feel better. She told me my results would be there Monday morning and she hoped everything worked out. The U/S tech just told me to have a good weekend. I was still scared.

My husband and oldest son went camping all weekend and Thomas and his sister hung out with me. I can honestly say it felt like the longest weekend ever. First thing this morning at 8 AM the Dr's office called me. The nurse said they were sending me to the surgeon for a surgical consult. My heart dropped when she said it. She said that all they had back was the U/S, the mammogram wasn't back and that all the report said was "appears to be a cyst". She said she would call at 9AM for the mammogram, she would make my appointment and call me back. I got off the phone and cried again.

The nurse called me back in a couple of hours and asked how I was and when I said Ok she sort of sighed, the mammogram had not been read yet. Of course I'm thinking... why not? She gave me my appointment time for the surgeon, I asked a few questions. She said they were all praying for me (I know all of the staff there) I cried again, I'm really scared.

Some people may say, well this isn't bad news, you'll be fine! You may actually be right, in fact I hope you are right. BUT this isn't happening to you right now. This is me and no one has said to me yet that everything is 100% fine, so until then I'm absolutely terrified. I think I have every right to be. My 30th birthday is tomorrow and I certainly didn't see this coming, this , I keep saying this like there is some word I just can't bring myself to say. I didn't expect for my 30th birthday that I might be sitting here wondering if someone may say to me that I might have cancer, there I said it. It's terrifying, absolutely and utterly terrifying.

It Matters

2010-10-11T10:13:00.000-04:00

Some things just matter and no matter how hard we try to forget or we try to erase the hurt, pain or the memory, it matters. It may not matter to anyone else, but it matters to us. We are all entitled to our feelings, opinions and so forth. Again, I say that it may not matter to anyone else, but it could matter to you!

On Saturday we had a wonderful turn out for the Run/Walk for Autism. 24 wonderful, dedicated people left their homes and came to join us in honor of Thomas. It was very emotional and very wonderful to see these kind hearted people show up and support him, support us and love him! It mattered to them to be there and they proved that. We had children walking with us, even a few that walked the whole way. Thomas' older brother ran the entire 5K! I was so proud of him. On the flip side of that, there were a few people who had said over and over how much this meant to them and how much Thomas means to them but they didn't show up. They really proved to us that perhaps this doesn't mean as much to them as they had proclaimed some months earlier and that Thomas and Autism doesn't mean that much to them after all. What a saddening feeling I had that day to really feel that for him. What an eye opener as well, it has nothing to do with me, but this little boy who cannot speak for himself and whether or not he will or may ever know if you were there.... it has nothing to do with that. Someone said that they would show up, said they would be there and that this was "their thing, their platform, they were excited..." then nothing on the day of the actual walk. I'm sad for Thomas because he will have to encounter people in his life who may build up his hopes and then tear them down and it's my job to teach him to be able to deal with that.... you would think that people who claim to love him wouldn't do that to him at 4 years old. I'm very saddened and very hurt for him. It matters.

We raised over $5,000 by the end of Saturday for Team Thomas and while we were not the team with the most money raised, we did very well. We had lots of people to give money that day, we had some late comers to sign up and walk with us and somehow some of the workers from the Autism Society had heard about Team Thomas.... so it matters. That matters a lot. That money will be used for so many good things. It will be used to help someone who needs therapy, whose insurance won't pay, and so many other things for children and adults with Autism. To learn more you can visit the Autism Society of NC's website and read more.

So many things are happening in our little corner of the world. It seems that good friends are hard to find, things are always happening, something always needs to be done, kids are going here and there, someone always has something to say. In reality the only thing that matters is making it through the day in one piece and worrying about what God has to say. His opinion matters and no one else's. I've been thinking about writing some of this into a book, have no idea where to start, or end. Is this the life I would have chosen for us? Probably not. Would I trade this life with anyone else? Not for anything else in this world! Each day matters to me in some form or another and when I hear someone say "I'm glad it's you and not me", I'm glad it's me too!

Helping Hands...

2010-10-05T10:26:00.000-04:00

It's been 6 months since Thomas was diagnosed with Autism Spectrum Disorder, Aspergers Syndrome. So many times I've wanted to say how I feel, what I feel, but there is no one to tell.... Tonight is our first Autism Support Group. I feel like this is a very important thing because the families of children and adults with Autism need someone to talk to.

When all of this first started we had a lot of support, a lot of friends that were willing to do anything they could to lend a helping hand. Now, it's not that our friends have disappeared so much as that we don't hear from them as much. We don't get phone calls checking on Thomas or us, we don't really get asked how things are going. I can hold my head up, but that only works for so long before I nearly drown... Sometimes we just need a helping hand.

We did an article in our local newspaper. The point of the article was to help people better understand Autism and what our life is like living with Thomas. We don't want pity, we simply wanted some help. When someone sees us in public and he's throwing a fit, not to give us the look. You know, the look like "Oh no, that poor child must not have gotten his way when he wanted something...." no that's not it at all. As much as I would like to think I could do this by myself, I can't. I also never heard from my other family members after doing that article.... funny how some people we are around just can't get with it.

I have a great mom who helps a lot. If it wasn't for her being so close by I wouldn't be able to do anything. Thomas would be forced to do many things that he either didn't want to do or simply can't do. Often he just doesn't "feel" like going with me to get my oldest son from school. His twin sister will ride with me and one of conversations in the car a few weeks ago went like this: Me "You and Thomas will be here next year" Her: "I know!" Me: "Do you think Thomas will be ok?" Her: "Yes I think so" Me: "You take care of Thomas don't you?" Her: "Yes" Me: "Do you think one day you will stop taking care of Thomas?" Her: "Maybe......one day"

She is my little set of helping hands quite often at 4 1/2 years old. She helps me more than anyone else ever does and she really shouldn't have to. It's very difficult here sometimes and often some days I'm not sure how I will make it to then end of the day. It's hard for a 9 year old and a 4 year old to understand what is going on. If they had a set of helping hands as well then they might could make it through a little easier too.

Timing is Everything!

2010-10-04T14:25:00.000-04:00

I haven't written anything in a while, not that I haven't had anything to say but the simple fact of the matter is..... I live with an Autistic 4 year old. Getting to sit down and write about what is going on in our world is not a top priority. Timing is everything.... I have to find time to answer the phone, time to take a shower, time to sit down and eat, time to do the laundry, time to go to the bath.... well you get the idea. Thomas takes up a lot of my time. So do a lot of other things I am involved in so that my other two children don't feel left out. Often I'm asked the same question "I don't know how you do it all?" Well if I stopped I'm not sure I'd know what to do then either.

Monday's are scout nights, my oldest son is moving his way right on up to Boy Scouts and he thoroughly enjoys it. I go because I'm a part of the scouts in one form or another doing things for them and helping out, getting advancements, doing fundraisers, etc. Eventually they won't need me anymore and then it will be time for Thomas to try scouts and I'll be prepared to go through it with him as a parent. Again... timing is everything. On Monday evenings Thomas and his twin sister go to dance for an hour and a half and this is a very good thing for both of them. Their teacher is very familiar with them both and this is truly a good thing. I'm looking forward to the recital early next year and to watch the two of them on stage! Yes you know... it's all about the timing.

Tuesdays now are a slower day and I've decided that I would like to start a support group for families who have Autistic children or family members. I'm thinking that once a month is a good amount for us to meet. So for one hour I will get together with a group of individuals dealing with the same challenges that I am and we can help one another to face those challenges head on and deal with them the best way we can as well as passing on information for other local support. There is that timing again, funny how it shows up when it's needed.

Wednesday evenings I work part time with my mother and this is a little "free time" sort of because I'm away, I envy my husband because he gets to work all day and be with other adults while I'm home. I love my children, don't get me wrong, but I do wish some days that I could be out and I do wish I could work a little more. We do group therapy for substance abusers and it's great and often very inspiring. Timing.....

Thursday I take Thomas to OT in Raleigh for sensory therapy. This is great for him and he often needs this by Thursday. He does very well and usually doesn't even need me to be in the room with him. We are very fortunate to have been told about this therapist and this place. They work well with Autistic children and seem to know how to help him with many areas he still struggles in..... she is right on time when we need her.

Friday is another sort of free day for us. Thomas and his sister are in preschool M, W, F and this has been very good for them. They have excellent teachers who are very understanding. They are wiling to work with him and be there for whatever he may need. I was very lucky to find this preschool and to know both of these teachers, man that timing again is everything......

Speaking of timing, maybe it's not always just the timing or being in the right place at the right time but maybe it's the hand of GOD putting us where we truly need to be when we need to be there. Things here aren't easy, we struggle every single day to make it through and often it's hour by hour. I don't have many friends that just check in and I'm by myself the whole day, but just knowing that there are little things that can get him through to the next day and that there are other people who truly understand makes it easier and all worthwhile because my life wouldn't be the same if it wasn't this way

Rough Road Ahead

2010-08-09T09:34:00.000-04:00

This week is going to be a rough week in this house. On Wednesday I will have my 4th knee surgery. It's the 3rd one on my right knee. I tore the cartilage in it. I have no idea how I did that. Not to mention that last week I slipped and fell on the stairs coming in the house and might have messed it up even more, but that's ok they are fixing it! I don't have a time yet, just the day.

Thomas will not understand what is going on. This will rock his little world. Sure I've had surgery, actually more than one since they've been born but not since we've known about the Autism. Not that that makes a difference but things now are more rigid, the schedule is more set and he has a routine every single day that really does not vary or change by much. On Wednesday I'm probably going to mess that up for several weeks. The house is going to turn upside down and then on top of that everyone is going to start back to school.

All of them are going to different schools and starting at different times. Thomas doesn't realize that he will not be with Sissy next year nor do I think that she really has grasped the concept that he will not be with her. My oldest will be a 4th grader and everyone goes and different times during the day. Not to mention that into the mix of that we are going to throw mom who just had knee surgery and needs to go to orientation, IEP meetings, get Thomas to OT, drop off and pick up, etc. Our typical day on a Monday after everyone has started will go like this: My oldest will have to be at his school by 8 so we will leave the house around 7:45 ish. Thomas then needs to go across town to his school and be in by 8:30 and finally Sissy needs to go a short distance from there and be in her preschool by 9. Mom can then come home and clean, relax, run errands, whatever until the pickup process begins which will be : Sissy is picked up at 1 and can come home because we don't pick Thomas up until around 2 and then we need to book it across town to get brother by 2:30-3. This will be the biggest issue because I can guarantee that Thomas will be hungry and thirsty so I will always need to be prepared with a snack and drink (Yoohoo) so that we can go get in line for brother because the line there gets long, quick and you don't want to wait in the very back of the line especially with Thomas who is ready to get him and GO!

I'm just praying that this week goes well for me, for them, for everyone! I hope and pray that everything with each of them and their schools goes well. I'm very worried for Thomas and Sissy being separated. I know it is going to be difficult for me, I will be very emotional. Due to my surgery I have had to cancel some appointments for him that we really needed to get to and I just could not get there. So if you are a praying person, send one up for Thomas because sometimes change is the hardest thing to accept.

Letting Go

2010-08-02T19:37:00.000-04:00

I've learned that you have to do a lot of this. Lately I've had to let go of the thought that I'd ever have my father in my life or that my children would have their biological grandfather. One day I will have to sit down and tell them everything, but that's one day, not today! My oldest son will have questions and I will address those with him when the time is right. For now I'm letting all of that go. It's not good for the soul to hold onto things. God does not want us to be angry beings.

The same holds true for Autism. While dropping my oldest son off this week for camp my grandmother told me a story that someone in our family had told her. They teach in the public school system and just had a boy with Autism to graduate and his counselor had come in when he first started to teach them about Autism and what to expect. The counselor said to imagine that you are going on the best trip of your life (most people would say Hawaii) and you are all geared up and ready to go and the plane lands in Kentucky. You think to yourself this is terrible, this isn't what I wanted or expected at all. This is not what I had planned for. Then you realize that Kentucky isn't so bad after all and you adjust and make the best out of it. That's Autism!

When Thomas was born he wasn't supposed to make it. He was grey and little and his chest was caved in. He had tubes everywhere and he couldn't breathe. In the NICU he had blood drawn multiple times a day and he went back and forth between a CPAP and being intubated. He had a spinal tap and had staph infection. He was not supposed to make it. BUT HE DID! He came home and was not doing things on time, he had a right sided tremor and had to go to a neurologist. He had to have a bronchoscopy at 11 months old and was diagnosed with not 1, BUT 2 respiratory conditions. He went another year and was diagnosed again with Asthma. He went yet another year or so and BOOM Asperger's Syndrome - Autism Spectrum.

I've been through all the anger emotions. I've had to let go of a lot. I can't be angry anymore because he needs me! There are things much bigger than I am, more powerful than I. Sometimes we just have to learn to let it go!

A Story for Thomas

2010-07-30T09:07:00.000-04:00

I was asked to write a story for a magazine to be published in August for the September/October issue. It's about Thomas and what our upcoming fundraiser is and what our efforts have been. I haven't sent this to them yet, but I did send it to my family. After my previous blog I have a feeling that some "other" people read that so if they are reading this.... READ this story, truly understand what is going on here. This is lifelong, every day, every second and it affects not just Thomas but all of us. Here is Thomas' Story

On March 30, 2010 Thomas Summers was diagnosed with Aspergers Syndrome, a form of Autism. For his family this meant that life would forever change. Thomas is a loving, sweet 4 year old little boy with a twin sister and a 9 year old brother. His mother decided that there should be more awareness for Autism and decided to raise money for the Autism Society of North Carolina by doing fundraisers. Right now 1 out of 110 children are diagnosed with Autism and it is four times more common in boys than girls. With the help of her friends and family they formed “Team Thomas” to walk in the upcoming Run/Walk for Autism in Raleigh on October 9 in Moore’s Square. The team got together and started going to local businesses and asking for donations for t-shirts and seeing who would allow them to do fundraisers. They were pleasantly surprised by the amount of support that was shown not only to the cause but also to the Summers family. “Team Thomas” has had a Partylite fundraiser, Chick-fil-a Spirit Night, an ongoing 31 Gifts fundraiser and they will be at three of the First Fridays on the Lawn. All of these combined were great but they all had one big one in mind. Heather Summers, Thomas’ mother, contacted Steve Raper owner of the Doghouse Grill and asked him if he would be interested in helping out. Steve ran with the idea and an enormous event was created. On September 11 from Noon-Midnight “Team Thomas” and the Doghouse Grill will have an Autism Fundraiser. Starting at Noon we will have games, face painting, the start of our silent auction, music, candy and much more! Stop in and have lunch and see what we have going on. We will have our t-shirts, lots of information to hand out, Autism Awareness bracelets, pins and magnets. The team is all there to answer questions, play and have a good time. The Easy Street Band will be there to play around 8pm until Midnight and “Team Thomas” will still be going strong. There will also be a bake sale and we would love to have the community involved. Stop by the table and sign up for the walk while you are there.
Finally, Mike and Heather would like to thank our friends and family for their love and support. We want to thank the businesses who have donated their time, effort or money to us or the Autism Society. We deeply appreciate all of the prayers and concerns from our community!
*”Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities—including classic autism, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s Syndrome—that affect a person’s ability to understand what they see, hear, and otherwise sense. It is a brain disorder that impacts communication, social interaction, and behavior. Individuals with ASD typically have difficulty understanding verbal and nonverbal communication and learning appropriate ways of relating to other people, objects, and events. No two people with ASD are the same. As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity. Additionally, ASD is often found in combination with other disabilities.” (Autism Society of North Carolina)

Faith

2010-07-20T15:05:00.000-04:00

Hebrews 11:1 says Now faith is being sure of what we hope for and certain of what we do not see.

Yesterday I took Thomas for his appointment with the social worker and we discussed the fact that it seemed that aspects of his Autism may be getting worse or regressing. I knew that there were things I wasn't able to control anymore. There were parts of this that I wasn't able to help him with and I'm having a very difficult time communicating with him. He seems to have numerous meltdowns during the day that even I can't control. It becomes a very daunting and frustrating task even for me, the one person who is with him all the time. I get advice thrown at me left and right, but the reality is that he is my son and I know what is best for him. It's not herbal remedies or punishment or spanking or grounding or any of that. He needs what is best for him, he is Thomas. He is not the Autistic child next to him or a mold of someone else. He is himself. This is what I want someone to understand and believe. He is ever changing and this is what is so extremely difficult. Like the verse above.... it's not what I had hoped for, but it's what I got and I'm certain that I have faith even when I can't see it.

The outcome of the his appointment was this: We are going to start teaching him some simple sign language again. Luckily I have a friend who is a sign language interpreter and she agreed to come and work with him. Hopefully when he cannot verbally communicate then he can sign some simple wording to get out what he needs to. I also have bought him a weekly chart so that he knows what his schedule is day by day. Routine is very important for him. He has also gotten very stuck on his brother, so we will incorporate time during the day that he can play with him while not overwhelming his brother. I'm also going to get him flash cards that have feelings, moods, etc on them and attach them to a key chain so he can wear them and be able to express himself that way hopefully without screaming or hitting or throwing something. We are also supposed to check into a case manager and /or CAP worker for some help and guidance. Finally I'm supposed to finish filling out his paperwork for TEACCH. So if I didn't have anything else to do I now have many things added to my list!

I also found out today that I may (possibly) really hoping it's not, need knee surgery. I'll go next week for an MRI on it to see if there is a tear. If so then it must be repaired. Of course this will put a bump in the road with Thomas and his daily routine and schedule. I have been having so much trouble with walking, sitting on the floor, moving, getting around, etc though that I'm almost hoping they will just fix it because I don't know how long it can go on like that and with him needing so much from me!

Faith: being sure of what we hoped for and certain of what we do not see. Sometimes you just have to have a little faith, hope for the best even when you can't see what's right in front of you!

Lifes Not Always Perfect

2010-07-18T08:46:00.000-04:00

It's been a few days, well several days since I've written anything. My mother and I took the twins to the beach. My husband and oldest son stayed here because they both had commitments that they had to keep. I really needed a break, prior to leaving my feelings had been incredibly hurt by several people and I could really feel myself losing control. Not the kind of control where you have to "be in control" but just control in general. The insurance company had gotten me, someone I thought was a friend (maybe not a close friend) had hurt me and my husband. There were probably others in a 2 week time period but that's not here or there.

So a vacation was in order and it was amazing. Thomas did very well considering we were in a new place, new people, new things. He had been to this beach house before but he was out of his normal routine and his things. He got up early every morning and at least two times a day had a severe meltdown. Sometimes it was much more...but I take what I can get so that we can survive. One day down there it rained and not just a sprinkle it down poured. We decided to take them to the aquarium and of course there was about a million other people there who had the same bright idea that we did. I could tell that this made him extremely nervous to be confined inside with such an enormous amount of people. He stayed close to either his sister or one of us. He often got very upset because someone would be in his way or he couldn't get to the glass to see. He never quite understood why people wouldn't move along after a few minutes of looking and give someone else a chance. All in all he did well there until it was time to walk to the car, walking is not his strong suit and it often results in someone carrying him. I typically carry him but can't do this much anymore. I am considering getting a stroller for him to save both of us, physically and mentally.

Since being home things have pretty much gone back to the way that they always are. Thomas is back in his routine. He wakes up about the same time every morning. He wants breakfast not long after waking up, he doesn't want his siblings to bother him, only when he approaches them. He has a need to be in control and he wants to know where we are going and what we are doing so that he can plan this out in his mind. He has to know who is going to be somewhere, if it will be a lot of people, etc. He wants to know if it will be loud or what we will do and what time we will leave. One new question now for him is what time is it? He is infatuated with these questions and you have to answer him. His twin sister is at the age of a little bit of antagonizing him. She can be quite the Diva sometimes.

Life is not always fair or perfect and if you have a child with Autism then every single day is not perfect. It's just that every single day can be a good day or a bad day. That's what they are.... you have good moments and bad moments. You have milestones that you meet and breakthroughs that you accomplish. You have victories and for us these are things that are perfect! This makes life perfect!

Seeing Red

2010-07-06T10:41:00.000-04:00

Red tape, anger red, just red! I'm so mad at the insurance company right now I'm still shaking, screaming and crying. On Saturday I opened a 6 page letter from BCBS telling me that they were not going to cover Thomas' Occupational Therapy because they say it is "not medically necessary". Now he had a prescription from the pediatrician for this not to mention the therapist and social worker in Greenville both said he needed it and I have documentation of that in the report for his diagnosis. BUT insurance says, NOPE he doesn't need it.

So let me just tell you why I'm so upset, so angry. This is a child who clearly is developmentally behind. I believe that his Autism is developmental. Some people believe that Autism is behavioral. For Thomas we were beginning (slowly) to do some of the fine motor skills that he lacked or had trouble with. He has trouble feeding himself, but his therapist there had made a spoon and a fork for him. They were also going to order him a special plate. They were getting ready to work on buttoning, snapping, zipping, etc. Yes these may be things that I can do with him, but I also have two other children that need me and Thomas doesn't always listen as well to me as he might to someone else. He was doing well and the progress was small, but still progress. Now, nothing, he gets nothing. Many people have said what about the school system. Yes we are going to get OT through the school, but first you have to have an IEP. We went for that last week and Thomas wouldn't or should I say couldn't understand what they were asking of him when he had to do the hearing exam. So now today we are going for a hearing test at the Dr's office. MORE MONEY! He may not be able to begin speech and OT with the school until September. He will lose a significant amount of time.

We can't pay for this out of pocket, although I don't know how much it is for OT. Also on his report and what was suggested in Greenville was double OT and double speech. So that was what I was going to do. Private and through the school. BCBS has just taken that away from him. So now when he is still lacking certain skills, when it's taking him forever to do something, when he is still so frustrated..... thanks to the insurance company for allowing a child with a diagnosis with a prescription and with a report saying what he needed to go without proper treatment!

Yes I'm seeing red and I'm so angry and upset!

Is it good enough?

2010-07-02T09:07:00.000-04:00

Have you ever sat and wondered if everything you are doing is good enough? Lately that's all I do.... Especially yesterday which was a horrific day. I do the very best that I can on a daily basis and sometimes that goes hour by hour, minute by minute. This is not to say that other people are not doing the best that they can, I'm just talking about me.

I try very hard to get the kids out when I can. Typically that has meant the pool because we are members so I don't have to pay to get them in, they love it and I don't have to worry quite so much about them. Until recently anyway because Thomas is so wrapped up in his brother. Of course his brother has seen friends there and wants to be with them. Now I don't expect that people are going to sit and talk to me at the pool, even if they are people who know me. I've come to realize now that a lot of people sometimes shun away from us and that's ok. Yesterday we had an incident where a child at the pool took a toy out of Thomas' hand (after Thomas threw one) and threw it in the big pool. Of course to this child one bad turn deserves another, however as this child began to explain to my Autistic son that his horrible behavior deserved for that toy to be thrown in the pool was where my emotion began to run. Thomas cannot understand things like this when you tell him. To him he saw the action of the toy being taken away and my oldest son tried to come between the other child and Thomas to no avail and however was unclear on the right thing to say knowing Thomas was extremely upset and could not comprehend what this older child was saying to him. I of course made my children leave (it was time to go anyway) and was later "scolded" in an email by this parent.

I do get very emotionally involved when it comes to Thomas and most of the time I can't separate myself from that. I am very involved and I am on a mission to give out as much information about Autism and Autism Awareness as I can. I tried very hard to get help for my son when he was 2 and no one would help me. It took me 2 years to get anyone to listen to anything I was saying and to really hear me. I'm not saying we could have fixed anything, no he would still have Autism, but maybe just maybe some of the things he has going on might not be as severe.

To the parents that think I go to far with awareness, try having your child not look you in the eye when they speak to you. Or when you are sitting at the dinner table have them tell you "don't look at me" "stop talking to me" Have your child throw a tantrum for hours on end with no stopping, nothing you can do to console them. Be in a restaurant and they must get up and jump behind their chair, run around the table or just "stim" in some way while the people around you just watch. Be in Walmart, Target, etc and he has a meltdown screaming bloody murder at the top of his lungs. It feels like at any moment the police or DSS will show up. Have him bang his head on the furniture because he just has to. Or have a 12 month old that won't talk and just grunts and is taught sign language because they can't tell you if he will ever speak, but they can't tell you why.

Those are all the reasons that I am doing this and pushing so hard and because I care, I love my son and I hope it's good enough!

And the greatest of these is Love!

2010-06-30T16:11:00.000-04:00

Today is our Team Thomas meeting to discuss our fundraisers for the summer so that we may prepare to walk in October for the Autism Society. In January I celebrated the 4th birthday of my twins and I did not think that just before my own birthday I would be walking in the Autism walk for my own son.

I'm reminded today of how much love is surrounding us by so many people. The Beatles song said it well "All you need is love" Of course we need a little more than that. My favorite is Faith, Hope and Love and the greatest of these is love.... Another says "so much of what we know of love we learn at home" I hope that is true! I hope that I'm teaching my children a lot, but most of all how much they are loved!

Back to the outpouring of love that we are receiving, there is an overwhelming number of people showing up tonight. We have our first fundraiser on Saturday and so many people have said they are coming, or if they can't come they are willing to purchase something to help out! We already know when a few fundraisers will be and people are willing to help wherever they are needed. We are also up to 8 walkers in October and I'm sure we will see that number grow! I'm simply amazed how the love and support from people, some that we have just met, some we don't even know and others we've known for years is just overflowing! We truly are blessed and it makes my heart feel good. It also gives me hope for Thomas' future, that he will be surrounded by people who love him.

I just want to thank everyone who has been reading and who is helping in some way. I want to thank those who are praying, the phone calls, any notes or emails. I have to say that the journey is lifelong, hard and treacherous, but with friends, family .... faith, hope and love we can get through anything!

"To love another person is to see the face of God."
-Les Miserables
"Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbor... Let no one ever come to you without leaving better and happier. Be the living expression of God's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting."
-Mother Theresa
"If you judge people, you have no time to love them."
-Mother Theresa
"We come to love not by finding a perfect person, but by learning to see an imperfect person perfectly." -- Anonymous

Valid Fears

2010-06-29T08:46:00.000-04:00

My entire world changed on March 30. I know that other parents of special needs children, children with disabilities, parents who have lost children, children born prematurely will all say that they feel the same way. All three of my children were preemies and all three were in the NICU. I know what it is to have fears and concerns when it comes to your children. I think that if they are your fears then they are valid, no one can push them aside and say "that's silly". Just like an opinion, everyone is entitled.

Thomas has outbursts. He's autistic and I don't think that I have read about or encountered many autistic children that at some point have not had an outburst of some kind. Lately he is very taken with his older brother and wants to do everything that he does. This is ok for the most part, but his brother needs some time too. I've said before that I really think my other two children need an outlet, friends. Yesterday we went to the pool. Thomas loves the pool and he enjoys the water. Luckily in the morning there was a friend for Thomas and his brother. This worked out great and Thomas left his older brother alone so that he could have some time to himself. I got along great with only a minor meltdown in the beginning. I decided that the pool was going so great the last couple of weeks, we'd go back yesterday evening. Only this time there was someone for Thomas' brother and sister but not for Thomas. This happens, right? Of course it does! Only problem is that Thomas doesn't understand, receptive language is low for him. Explaining to him why his brother needs a moment or can't play with him right now causes a meltdown. He doesn't get it. He began thrashing in the pool and screaming with about 15-20 other people looking on. We attempted to calm, many times over. We took him out of the pool, my husband swam with him, the end result was more screaming and us leaving.

My fears are.... well there are many. I fear that someone will see this and call the police, lucky for me I know them all. I fear they will think we hurt him when in reality, it's just how every day life is. I work with him to help him understand but if I could show you his IQ score you would see that he is extremely intelligent until you get to his receptive language. I fear that other people will not want to associate with him, with his siblings and eventually with us. Silly.....yes, but my valid fear. Have you ever heard someone say "oh my daughter has an autistic child in her class or a handicapped kid in her class, etc" ? Now don't get me wrong because there is nothing wrong with this, but I have to say that I wonder if the mother's from last year have said that.....and Thomas is "that kid".

Maybe I'm not saying everything the way that I'm feeling it, it's harder when you try to write it. I don't care what others think, I'm past that point. However, yesterday what was so gut wrenching was the look on people's faces as I tried with all my might to help him and even I as his mother can't do anything. I have to watch him violently thrash in the pool and scream. No, I didn't care what they thought, not about me anyway... the thought running through my mind was what will happen when he's older, what happens to him one day when I'm not there, will people just turn and stare at him. My fear is any negative things they may think of him.

A dear friend told me yesterday to write my thoughts down, the good and the bad, and then I can see how things lie. She said that this will certainly help me to focus on the good and to also see where Thomas is having the most trouble and hopefully be able to pinpoint some triggers. I think she is smart! I also hope that by writing here I'm helping someone, I'm educating someone who doesn't know what Autism is or that I'm just helping myself by putting out there what's on my mind. The Team Thomas fundraisers are not only about raising funds for the Autism Society, but about raising awareness this summer. Sometimes it's not all about us, it's about the journey we are on.

Share the Experience

2010-06-24T15:12:00.000-04:00

This blog I've thought a lot about writing, mostly because it's a two part thing. I'll start with the first part and hope that I can make the two sort of flow together.... I'm not always very good at that. In fact I think that this is rather sad. I've always written that I often had ideas about how I pictured Thomas being when he was first born. I think all mother's do. When you first see them you think all these wonderful thoughts about how they will grow up to be, sort of a flashforward of sorts. We all like to share those moments with family, friends and loved ones. All of your most exciting moments in life, tragedy, birthdays, huge events, etc are all shared with someone. Of course when you are married you share those all with your spouse. Most people have a best friend to share those moments with as well. Growing up I had a best friend. We did everything together, went everywhere and literally shared all of life's ups and downs together. Now as an adult I don't have that anymore. Yes my husband is my best friend, but a best "girl" friend is much different. There is no one to share these moments with, no one to call when I'm having a bad day, no one to go to the movies with, no one to have a cup of coffee with, go for a walk with, no one to pick me up when I'm down or the biggest thing.....for me to help them!

When you have twins they often share a lot. They are together all the time and they just know how to fix things for each other. My daughter does that for Thomas. She has always been there for him and she knows how to solve the problems. However, she has no girlfriends. She doesn't get invited to play dates, she doesn't have a best friend, no one comes over to play with her, etc. I feel bad for her because I remember how wonderful it was to have someone in my life. I hope that by splitting them apart next year and getting Thomas the help he needs, she will be able to form friendships and possibly even find a best friend! Maybe Mom will too....

As for getting Thomas everything he needs, I'm really feeling the need to go to work. I'm feeling very drawn between leaving them but helping to supply our family with certain things. I won't go into great detail here but it's very sad for me and very hard to think that I can't do everything for Thomas that he needs or that we constantly have to ask for help. I really wish that I could find something during the time they are going to be in school and then I can still devote myself to being with him when he's home. It's very difficult to try to "teach" someone else how to deal daily with everything. Not to mention there are still Dr's appointments and therapies, etc. I could work at night but I guess sleep is important. I've thought for years that getting this certain certification was going to solve everything but I now know that it isn't going to fix anything, there isn't going to be anything for me to do.

I'll end all this by saying that I don't know who reads this, I think someone must! Thank you if you do and for today just be there for someone and share their experience, joys, happiness, sadness and most of all love!

Prayer

2010-06-22T08:28:00.000-04:00

I think that in life it's all we have sometimes. One Sunday morning our preacher did his sermon and told about how we pray when we are in a jam, pray when we really need something, pray when you want something to go your way, etc. Do you ever truly pray when it's just the right thing to do ?

I have said that for the last year through this struggle that I pray as soon as my feet hit the floor. I have to or I won't make it through the day. I have to pray for Thomas and my other children. I pray for myself and for my own freewill shall we say. I pray for the others around me. I have to pray many times during the day. I often just have to stop and take in a deep breath and call God's name, he knows what I'm doing and then go on. I also pray just before I go to bed. Now I'm not talking about drop to your knees like when I was a kid and kneel beside the bed. I'm talking about taking moments to myself when I can with God.

Recently on Facebook I've been asking for prayer for Thomas. I notice that not so many people respond to that. I'm wondering why that is? Let me go on though about Thomas. We are on his 4th medicine for tantrums, a mood stabilizer that can (a very very low %) have some side effects. He is also on something to help him sleep. I'm feeling anxious and nervous myself, praying and praying that I haven't given him something that is going to harm him in any way. I'm praying that this will help him. I'm praying that none of those terrible things she told me about will happen because....... I'm not sure I could live with myself. I then have to remember that I'm just doing the best that I can and the best that I know for my son as the present time. I'm doing what a Dr, with more education in this area than myself has advised me to do.

So for today I'm praying!

Father's Day!

2010-06-20T08:58:00.000-04:00

Happy Father's Day!! I hope if you are a father, have a father or a husband or even someone in your life that is like a father that you will let them know how much you love them today! I'm blessed to have a great husband who works very hard so that we can have what we need. If I haven't nagged hard enough before he works for the Police Department as a CSI.....technical term Forensic Analyst. He does a lot for us though and I'm very grateful! Not to mention that he loves me with all of his heart and I couldn't ask for more than that.

I have a wonderful step father who loves my kids. He comes by nearly every single day. He and my mother live very close (within walking distance) and he does a lot for us too! He has been in my life since I was about 11 or 12. Of course at that age it was much harder to accept him, but I have come to love and respect him as an adult. I even call him Dad on occasion.

My biological father isn't in my life and hasn't been for about 3 years now. This has been very hard for me because I don't understand how you just let one of your children go like that. I look at my children and can't imagine doing that. He knows nothing about Thomas. I have a niece and a nephew that I use to spend all my time with when they were little that I haven't seen in years. I can't even begin to tell you how that kills me. I don't think my nephew even knows me anymore. I have a sister that I haven't heard from and a brother. These are not my mother's children, these are half siblings. They all live within 5 miles or so of me. Yes I could pick up the phone but for many years I did pick up the phone and was the person who often initiated contact even when I felt they didn't want that, I grew up and decided that I needed to see if anyone would contact me. No one has and ...... well all this is to say tell people you love them if you do. I look at my 3 children (just like there are 3 of us) and I just can't imagine how they can't always love each other and want to be together or help each other.

I had a wonderful grandfather who was probably my best friend and like my father. He died 2 years ago. I miss him terribly. Thomas is a lot like him, in many ways. Very smart and always knows exactly what he wants. My grandfather was a brilliant civil engineer who came up from pretty much nothing and graduated top of his class at NC State. He was my hero and on Father's Day I would always call him.

One day my boys may be father's and I hope they know how important that is! I hope they will still let me be a part of their Father's Day and continue to make a fuss over their Father! Enjoy your day!

One Step Forward

2010-06-16T13:16:00.000-04:00

We take so many backwards. This is a vicious cycle. I feel like I'm on a roller coaster. That's it, it's like being on one of those hideous rides at the fair that goes sideways, upside down and loops around and you want to get off as soon as it starts but you really can't and you know it. Mind you.... I don't like those rides and don't get on in the first place!

For anyone who knows me, I'm snappy, sarcastic and I don't take stuff from people. I'm a very personable person, don't get me wrong.....but I just lay it out there. I'm very honest and open I guess you'd say. However this experience with my son has humbled me I'd like to think. I'm still sarcastic, yes (I can hear my friends reading this now....) but now my main response to everything is just grow up.

So back to my point, I'm getting a little off track and when I explain you will know why. The new medicine isn't working either. Today is only day 2 and it has made him sick. We had a Dr' s appointment this morning in Greenville, NC and saw the Social Worker that we've been seeing for months now. I told her what we've been doing and trying. She wasn't happy with the new med they just put him on. I thought GREAT, what am I supposed to do now? So I take him back on Monday morning, bright and early. Mind you I got up late this morning, drove in the pouring rain, but she got to experience what we've been experiencing.....

Thomas is now chatty, no not just chatty, he is talking non stop and stuttering. He then flips and says Don't talk to me, Don't look at me and then the next thing you know he's screaming, yelling or crying. Talk about frustrating. So this morning he had no contact with her at all, but talked constantly to me about everything under the sun. All the way home he talked and talked and talked until he got sick about a mile from home. He hadn't eaten anything at all and took the medicine on an empty stomach.

He's refusing to eat more often than he's eating. He has trouble sleeping and if any of you are on my facebook page.... you know we lost his My My Mommy. This would be his blanket. It's gone and we've torn apart two houses looking for it. It is just pieces of a blanket now that we've knotted together, but none the less it's gone! We've asked him numerous times where he put it, did he throw it somewhere and he has no recollection of where it could be.

I'm exhausted, my husband is tired and he works constantly and is rarely home. I work part time and am working hard to get a certification that I've wanted for years! It's hard to explain this to family and friends and have them truly understand what is going on or what we need help with. Right now I just need support, friends and lots of encouragement because when I step forward I constantly have one foot lingering behind somewhere

Hope......

2010-06-15T09:24:00.000-04:00

where would I be without any? I'd be lost and I'd never make it through a day. I have to have some kind of hope, at least a little. I've had to have a lot of hope the last several years. I had to have hope I wouldn't die, hope I'd have more children, hope they would live, hope I wouldn't die again, hope that Thomas would be ok and now hope that each every day, each and every minute we can make it through. That's also Faith! I have a wonderful church family that has been supportive. I'm not sure anyone ever truly understands the depth of what happens here on a daily basis. Even blogging about it can't give you a day to day, play by play. Some have been more supportive than others but I always find myself "feeling alone". I just read an article in a magazine where the woman describes her Autistic son and says that in the beginning she had the hope that she could cure him, teach him all those things he was lacking. One day she just realized, you just have to accept that this is how it is and while he can learn to do things he will never be cured. You just have to have hope that you can teach them all they need to know, that no one is going to take advantage of them and that you are making all of the right decisions.

Last week we found out that Thomas will attend the Autistic preschool next year. This means separating him and his sister. This is a huge deal for me and strikes me right in the center of my heart. Let me back track and start by saying that when they were born I had this image in my mind of how things would go.... don't we all? They would go to school together, play together and be best friends. That image is gone. Many people will say (and have said) well that doesn't mean that won't happen. Now this is true, but what I envisioned is no longer there. Any mother of a special needs child can relate. I have hope though that he will do the very best he can and when in Kindergarten he will blow them away. I have hope that his sister will make friends and finally be invited to play with other children her age. I have hope that she will no longer feel the need to watch out for her brother every single day. I have hope that when they come home, they will be each others best friend.

My mind often goes and therefore I can't remember if I mentioned the battle with sleep and medication. I have discovered that for children with Autism and on the Autism Spectrum this is a constant battle. Thomas is one of those. We are in the sleep battle now, not sleeping very well. At age 4 1/2 he can get up multiple times during the night and walk around the house. We have tried some different medicines that are to help with both the tantrums and the sleep. So far they have not been right for him. We are now trying something else, but I have hope. I have hope that we will find what works. I have hope that he will sleep like a normal child or at least all night very soon. I have hope that we will get his behavior calmed down, maybe not completely under control, but better.

If I've learned nothing else through this entire process thus far, I've learned this: Autism is ever changing, it doesn't magically go away and if I had that magic wand I can't tell you I'd use it. Thomas is who he is and who he should be. People are ignorant, but we have the resources to educate them. When it comes to my son, I have hope!

What It's All About?

2010-06-02T20:25:00.000-04:00

Tomorrow is my 10 year anniversary and I've often wondered what is life all about? Not the meaning of life per say but life should be what you make it right? What about when things and obstacles get in the way of those dreams and ambitions you have set for yourself? Can you still keep your eye on the prize?

From the time I was a teenager (and this is because I don't remember much of my life prior to that) I've been very head strong. I always do what I want to do and typically don't let anyone or anything stand in my way. I will find a way to get something done when I want it badly enough. Here's a little background history on myself so you will know a little more about me....

When I was 15 years old I was dating a guy who I thought was ok but I was wrong. About an hour before my softball tryouts he raped me. It took me a very long time to tell anyone and by the time I did, they couldn't find him. I was a teenager who hated high school because I was overweight, not just overweight, but fat. I got picked on a lot. However, I did have a boyfriend from 16 to about 17 1/2. Again someone else I thought was a winner who turned out to be a loser! He beat me frequently, put me down and was just mean. He convinced me to leave home for 9 days and during that time he and his brother tattooed my arms with a sewing needle and ballpoint pin ink and thread. It was the most painful thing I think I've ever been through and as you know I've had three children. They put two things on one arm and one on the other. It wasn't long after that I went home and then left school. There was too much going on. I got my GED and walked the same year my regular graduating class did even though I finished long before they did.

I had already met my soon to be husband and we got married when I was 19. Exactly 10 months later my first son was born. Not long after having him they discovered that I had Endometriosis and would have to take Lupron which nearly killed me. It left me confined to my bed for months. I was determined to have more children but was told it would be nearly impossible. I decided to lose weight and lost about 115 lbs. I met every stubborn doctor along the way too. I finally went back and begged to have more children and was given one try. As most people know.... I had twins! But that wasn't going to be easy either. They were born at 35 weeks because my liver failed and platelet count dropped. Then the babies were in the NICU.

Thomas was in for 22 days and his sister was in for 15 days. When they were about 5 months old I had to have a partial hysterectomy. I should also mention that from 1999 until the present day I've had 10 surgeries. They are all for various things and various reasons and various parts of me. After getting everyone settled I continued on with something I had already started, my Bachelors Degree. I was doing this online! I had started just after I got sick from the Lupron in 2004 and I finished in 2007. I got a BS in Criminal Justice. I desperately wanted to go and walk across the stage, but that wasn't going to happen either....

There are so many other things that have happened in my life and I could keep going on. I guess my point is that life can always be worse and it's all about what you make of it. If you make it bad then chances are it will always be bad. If you keep a positive outlook and remember that sometimes you aren't in charge then good things will happen. I firmly believe that God has a plan for everything and one day I will be there with him and he will let me in on the secret, until then..... Life is good!

Put your walking shoes on

2010-06-01T12:39:00.004-04:00

I have to say that I always a struggle with the title of these blogs for the longest time before I actually start writing. I could sit here and write forever, but coming up with a title takes a long time. One day I may just put a bunch of jumbled letters up there. Don't be surprised....well for those of you who know me, I'm just sayin.
Let me start this off by if you are a praying person, please stop for a moment and send one up for all of those 3, 4, and 5th graders taking the EOG's today. My 3rd grader is one of them and while he doesn't know it, I'm nervous for them!

So "put your walking shoes on" means just that. We are walking on October 9 in Raleigh, North Carolina in the Autism Walk. This is going to be a great event, I already know it. We are building a team called Team Thomas. I know, very original. It was my idea if you couldn't tell. We are in the process of having shirts made that will say All Aboard for Autism Awareness. We are going to be fundraising all summer and really hoping to get the community involved and raise awareness for Autism.

The walk is a 5K (3 miles) you can walk or run. You register online at http://www.kintera.org/faf/login/teamPageEdit.asp?ievent=425835&lis=0&kntae425835=E62CE36064844746BE41F240998D542D&page=view
It's $25.00 for the registration fee and they will send you a shirt as well, but like I said we are having our own TEAM shirts made! We would love to have an outstanding number of people there that day. There is also a kids walk.

All of the proceeds that we get from any fundraisers and the registration fees go directly to the Autism Society of North Carolina. Autism now affects 1 in 91 children. That number is falling still. It affects more boys than girls.

I've always said I don't know who reads this, who steps into our world, but if you are I hope you will consider joining us on October 9 and even this summer. Join Team Thomas!

There are just some people

2010-05-27T15:45:00.002-04:00

I have known since Thomas was about 18 months old that he was "different and unique" and I embraced that and even tried to get him help at that age. Of course as some of our friends and family know the verdict of that help was deemed inconclusive. I grew up with a mother who has worked her entire life in the mental health profession. I have a BS in Criminal Justice but the majority of my elective classes that I chose to take were in mental health. It's a passion for me to embrace that and to teach others that you don't shut out people because they are different. The world doesn't revolve around you.... with that said, you also can't fix stupid. I'm just sayin.... So I'm going to hop on my soap box for a moment because there are some things I just need to say because in this world there are just some people.
Why is that when you try to ask someone to help you out with a fundraiser or you are ASKING FOR HELP (this will be a repetitive key phrase) they are going to try to get their 2 cents worth? Now what is that about? Someone please explain to me how it is if you come up with an idea and ask someone for a little assistance then suddenly it becomes something that is going to take up their time and therefore will cost you money.
Why is it when you are constantly telling people that you need HELP, I mean outright doing everything but screaming from your front yard, they will help everyone but you? They will send an email to your inbox telling you that you need to go and help someone else because they are in crisis.....like you have nothing better to do and there is not a thing going on in your life. Yet no one has come to your door (yes I mean mine) and offered to lend a hand, ask how things are....and I have 3 children
Why is that a neighbor must walk over here and when she finds out that your son has Autism that she feels the need to offer you pity (I don't want your pity) and then when asking what you are going to do when it's time for school..... I say he's going to the public school, has the audacity to look at me and ask: "What you are going to Mainline him?" WTH??? Seriously? I mean this is the kind of thing that I want my child to have to put up with? Yes I am sending him to school with his sister, he's smart, he talks, he knows things....why in the world would I not send him to school?

If this is the kind of thing that I have to deal with from people then what will it be like for him when he does go to school or gets older? How will people treat him? If I can't get "so called friends" to help or be there for me, him, us then who will be willing to be there for him in his life?

There is serious need for education on Autism, Autism Spectrum and what it is, what it does and how children are different, not retarded...not incapable....not handicapped.....just DIFFERENT!

Off the soapbox now and off to horse therapy!

His Biggest Advocate

2010-05-26T09:40:00.002-04:00

There is a lot to be said for the relationship between siblings, even more so the relationship between multiples. Thomas' twin sister is his biggest advocate. I don't think we always give her enough credit for the amount that she understands. I've worried about how this is affecting her, I think it will be most detrimental to her. Even though she is the "youngest" I think she may always feel the need to be the protector or the guardian in some way. When we can't understand what Thomas is saying you can fully rely on her to tell you. If he's upset, you can ask her why. If he hurts her in some way, you can give her a moment and then she will simply say "it's ok..." He has often locked her in her room because he's mad at her or thrown all of her stuffed animals on the floor. She may try to help him in some way but he doesn't want the help and this frustrates him. However, she remains steadfast his biggest advocate. She continues to stand by his side, she continues to help him, she continues to understand what he says and feels and she keeps saying "it's ok..." I think a lot about the future and what his future will be like. I also think about my other two children and their futures, but not in the same aspect. We really want Sissy to have her own personality and to be able to learn to play and grow in her own personality. However when thinking of Thomas and his sister I often have to wonder how all of this will impact her life as she gets older. I can only hope that when they are both my age she is still sitting with him somewhere eating lunch telling him "it's ok..."

Baby you don't know what it's like....

2010-05-25T15:37:00.002-04:00

Many times my friends or my family members have said to me or to my husband "you know I just don't know what this is like". Oh how true that statement can be. There is no way for us to show them what Autism is like.... or when asked "well what is it like?" What do you mean? I don't know what to tell you. I can explain to you what a typical day here is like, but every single person is different and unique in their own way, especially when it comes to Autism.

A typical day in our home would start with Thomas getting up somewhere around 6-6:30 in the morning. He immediately needs a diaper change (yes 4 years old and still in a diaper at night) you wouldn't want to change the sheets either! : ) He then has to tell David about a million things followed by breakfast....which is usually the same thing, Cinnamon Toast Crunch and a Yoohoo. YUCK! Now sometimes he differs, sometimes he just wants cinnamon toast, yes I see you laughing, I'm laughing too or I'd be crying. Every so often I bake a butterbraid and we eat that, although it takes him much longer to eat that. Morning routine is pretty much the same every day, watch some cartoons, get dressed and play. This also depends on what we have scheduled for the day. For instance, is there preschool? errands? appointments? etc...

Lunchtime, oh lunchtime... well they love chicken nuggets and fries. I mean what child doesn't, right? I just can't supply that every day. He will tolerate a PB and J, by tolerate I mean if I ask him first and he knows that is what he is getting then he will take a few bites and drink a Yoohoo and that's it. He'll ask for a snack later. He does like grilled cheese and macaroni and cheese. Wow, seems there is a theme here. If you haven't noticed, all he drinks is Yoohoo and occasionally water.

The afternoon, after their brother is home from school then they have "rest time" and I use the term loosely. The only one resting is me and sometimes their older brother. It usually results in a little play time in their own room with a movie! I'll take what I can get. I see you Mom's nodding your heads. Dinnertime I will cook something, whatever I can find or have taken out. I would say 50% of the time he will sit and eat it and the other 50% of the time we have to coax him in some way. He is very visual , so pictures work very well. We may draw it on the whiteboard in our kitchen and try to get him to just take a few bites. By the way, he is at a perfect height and weight, so he does eat during the day, just snacks that he picks and wants to eat.

During other times of the day he can have tantrums, sometimes they last a few minutes, sometimes hours. He does hit and throw. He is a screamer, he does stim (you can look that up), they change, he has done visual stimming, spinning, jumping, rocking, head banging, etc. Never once (praise God) has he hurt himself. I think he will always do the stimming, it will just change as he changes. He scripts (you can look that up too) which is basically where he repeats things, for instance a play our oldest son was in. Thomas knows the entire play verbatim. Sometimes he is content to just play by himself and he will say leave me alone, he will say don't look at me, go away. Other times he wants you right there in his room playing trains, reading books and doing whatever is on his mind right then.

He is incredibly smart and intelligent and looking back and a blog I wrote last year where I described my children I should have known then. I described him as a child who plays alone but knows things and speaks in long sentences. I talked about his fascination for cars, trucks and trains. I just wish I had known. He's fascinating, tiring, loving and just incredible!

The Diagnosis....Thomas

2010-05-24T13:27:00.002-04:00

So we've switched gears here and moved from focusing on myself to focusing solely on my now 4 year old son, Thomas. Before I used no names, but want you to really get a feel for who he is. He is one of my twins (the boy in the set) and from the get go, the sicker of the two. Thomas was diagnosed with Autism Spectrum Disorder on March 30. His diagnosis is Aspergers Syndrome. You will find that now I will probably (try) to blog every day because I have a lot to say about Autism. I am on Facebook, but there you can't always express how things are going or what you are feeling. Raising an autistic son is not easy. It's demanding, time consuming and literally sucks the life out of me. He needs me for just about everything right now and I say right now because my main goal is to help him to be able to function normally (whatever that may be) and do the best he can for himself.
Right now in the world Autism affects 1 in every 91 children. That is an astonishing number and it's growing. It affects more boys than girls. For us, I believe that it is genetic.....I'll leave it at that for now. I believe in the theory of developmental instead of behavioral when it comes to Autism. I think that the brain has not developed properly instead of the fact that his behaviors are dictating what is going on.
His twin sister is his biggest advocate. She loves him, even when he hits her. She takes up for him. She speaks for him. She goes and finds him when he leaves the room. She loves him unconditionally...... if we all could be like that.
My oldest son is doing the best that he can. He is learning to cope with having a brother who often must get down from the dinner table to jump up and down or spin in circles. He often doesn't quite get why Thomas must flap in public, or scream out loud, but he's trying to. He loves him and he wants to work with him.
Autism is neurobiological and until just recently was a very rare thing that you just never heard about it. My goal is awareness, my goal is to help Thomas succeed, my goal is to help others see the world a lot like his twin sister sees him.....loving unconditionally!

Moving on

2009-08-13T08:35:00.002-04:00

And so the verdict yesterday from the specialist was that I do NOT have MS! Praise God!! This is great news for all of us. This has lifted a huge weight from my shoulders, now if the same weight would lift from my leg.....

My husband and I talked the whole way home about many things. I think we both had set ourselves up for this to be the answer because not one but two doctors had told me this! That's pretty amazing right? In fact when the specialist yesterday opened the chart he said that the doctors who had sent me did so because they said I have MS and wanted another opinion. I guess we walk a fine line.

The one thing that we kept discussing (my friends reading this will remember) is what about a medicine I took back in 03-04. LUPRON. Anyone who knows me will know that this drug sent everything into a spin. I was in the bed, shaking, sick, couldn't walk, couldn't function, could barely open my eyes. We were back and forth to the hospital numerous times and it was so bad at one point in 04 that they gave me an extra dose!! My mom thought I was going to die and I think my husband did too. I was on Morphine and pretty unaware of anything going on. I did finally start to get better, but had to use walking aids to get around. (Note: I may have some of this mixed up, I don't remember a lot of it) My oldest son was then about 2 1/2 or so. Finally after about 6-9 months of a time period I got to where I could walk on my own and after seeing Dr's who kept saying I was just fat and depressed..... I lost about 110lbs. In 2005 I became pregnant with the twins and in 2006 they were born 5 weeks early because my liver failed.

So what is Lupron you might be asking? Well I took it for Endometriosis, but it's a cancer drug. It's mostly given to men for Prostate cancer. My grandfather took it. We aren't 100% certain, but he possibly could have suffered some of the same ill side effects that I have now. He passed away last year from congestive heart failure and dementia. I wish I could have known if he truly did suffer from the Lupron. I do know though that there are thousands and thousands of people across the United States that have suffered from it. A few of them have died from taking it, some have had strokes, others are just like myself.

Why didn't I mention this before? Well there are two reasons. One is because early on we saw doctors and when we did mention it they seemed to shut down and didn't want to treat me once we mentioned the Lupron. My mom quickly determined that they thought we were seeking a lawsuit and wanted their help. No doctor anywhere is going to get involved in that. The second reason is because in the last year or so is when I began to be told that they thought I had MS. I didn't want to mention the Lupron then and throw another loop into the mix and I didn't want to scare off anymore doctors that were already beginning to help. Do you see what a mess this is?

I took the Lupron because the Endometriosis was so bad and because after my first son I desperately wanted more children. They told me we would never have anymore. I was determined, as I often am. As you already know, I have twins too!

Kindness

2009-08-11T15:20:00.000-04:00

I've experienced many acts of kindness today and they all have touched my heart. To start with I had a very sweet email from my mom this morning and I'm sure she knew that I would still be very nervous today as my appointment approaches tomorrow. She then came this morning and helped me out and took my laundry since the incident with the washer and dryer happened.....grr.

I had several nice messages on my Facebook and words of encouragement. These all touched my heart and made me smile. It's nice to have friends! My husband was very sweet at lunch today and I didn't have to ask him to do certain things.... hmmm.....

Then at lunch my oldest son came in with some coins in his hand and told me that he wanted me to have them. I told him that was sweet but to keep his money. He walked off and I fixed my lunch and sat down. My mom ate with me and I had to excuse myself to go to the bathroom. I walked in my room and noticed on the table beside my bed that the coins were there, my son had gone in my room and put them beside my bed. When I came back out to the kitchen I called him. I asked him what he wanted Mom to do with the coins and he said he didn't know, but just to use them. So after some thought and debate we decided that I would use them towards my next hair cut. He was happy and I was touched by his kindness.

This afternoon, I had a very sweet email that brought tears to my eyes. I got a phone call from a friend just to check on me before my appointment tomorrow and I chatted with a friend online too. You never know what little acts of kindness may do for someone, today they went a long way for me!

Just so frustrated

2009-08-10T14:15:00.000-04:00

Today is not a good day! It started out ok and I was just nervous that this is the week I go to Duke, but then it all went downhill. First I had to go through my twins closest so that I can make room for their new clothes. That turned out to be an adventure. Then I had to call the guy to come look at the washing machine because last night it wasn't washing it was just making this humming noise.

So the guy gets here and tells us that the motor is hot and it's leaking oil and the knob is loose and the timer is off. Oh my gosh can it get any worse because we just bought a refrigerator. I'm thinking we should have not bought that and gotten the washer and dryer instead. He said the dryer would probably only last another 6 months maybe because the knob on that is loose too. So he leaves and I am just in tears because I can't fathom how we will pay for this. I have no job (stay at home mom), not a lot of cash, we don't have credit cards, getting ready to have medical bills, etc.

Then my mother is here and of course I'm on edge. I'm on edge thinking about Duke, I'm looking at my dirty house that needs to be cleaned and wondering how I can do all that and the clothes that now need to be washed and no washer and almost no dryer and screaming kids and an 8 year old that suddenly got an attitude when asked to do something. So I'm throwing toys in the playroom and a ball hits her (a soft one!!) and she wants to know why I hit her..... I didn't mean to and I tell everyone to just get out and for her to go home and then I throw my daughter's camera in there too and she (my mom) has a fit. The camera is the Little Tykes camera and was made so that if it is thrown, dropped or whatever then it will basically not break, ever! My daughter has probably thrown that thing a million times already and it still works. But of course lets blame me for everything..... my house is just falling apart, my body is falling apart, it seems we can't get things together here. I'm not even sure if I applied for a job that anyone would ever hire me.... Hmmmmmm.

So now I'm wondering what the rest of the week would even be like. Makes me wonder what Wednesday will be like. Now that is scary!

Getting Out

2009-08-05T14:09:00.000-04:00

So I'm going to write about something slightly different today, Day 3. As I'm waiting patiently for the Duke visit I am itching every day to just get out and about. However, I can't just get in the car and drive around so it's hard to do that. I've come to know my children very well!!

For instance my oldest is extremely smart. He knows things that I never knew anyone knew. He loves to watch the History Channel and shows of that nature. He learns from them and he can soak up all of the knowledge that he gains. He can then repeat it all and tell you stories that he heard. He also loves art and music. He can sing and he can write songs. They are good too. I'm so impressed by his passion and how he expresses himself with his love for such things. He enjoys his little brother and sister but at the same time I can see that he is growing up and they are wearing on his nerves. The ages are really showing. He is getting older, more of a pre-teen and while they are sweet and he loves them, he wants his own space too. He likes to go to my mom and dad's house and enjoys the free time he gets there. He likes some video games, computer games, baseball, etc. He's just turning into a cool kid that I'm proud to know.

My second oldest who is a twin, but still he is older by 2 minutes has a quirky nature about him. You have to be able to handle him in any setting. He likes for things to be in order, neat and tidy and he likes his routine. He is my loving child, more so than the others. He will come up for no reason and just give you a kiss. He will apologize if he hurts you or hurts your feelings. He will talk in complete, functional sentences with very large vocabulary words. He is bright and he too knows things, but he is only 3 1/2 years old. I don't know where he learned these things because we didn't necessarily teach him. He can say the entire alphabet, and count to 20, he knows all his colors, but then he knows things like what kind of trucks are in the playroom or the boats. He knows the concept of space like big and small, far and near. He pays attention and he too has learned a world of information. He loves trucks and cars. He could play all day with them. He recently has gotten into Thomas the Train and boats too. He would be content to stay in his playroom all day long with a large selection of these toys and be left alone to just play!

My baby, the other twin and the youngest by 2 minutes and my only girl is both and Diva and a tomboy. How she became this combination I don't quite know. She just formed her own little personality when she was a baby and held onto it for dear life. It's the only way she could survive in this household! She loves to play dressup and at the same time she can go outside and kick a soccer ball clean across the front yard. She is carefree and messy. She has beautiful , long, curly hair and she does not want you to brush it. She is gorgeous in a dress and will tell you that she's pretty! She will fight with her brothers and she can hold her own. She loves puppies. She has about 10 of them and they all must sleep on the bed with her at night. If you don't have them all then it's a fight with her and she will win. She plays with her babies on a rare occasion because that is just not her thing right now. She will sword fight and then turn around and want her lipstick on . I'm not sure that some genes didn't get crossed up, but she is perfect in every single way. She is also smart, but in her own way. She has common sense. She is funny and she wants to be just like her older brother. She also loves her mommy and that thrills me! I always wanted a girl!

While having this "disability" temporarily or permanently, whatever the case may be, I have had a lot of free time to really get to spend with all of my children over the last 6 years. I wouldn't trade any of it, even to be well!

People

2009-08-04T14:38:00.000-04:00

Day 2.....and I find out today that some people have nothing better to do than to just talk, talk, talk. It might not bother me so badly if they actually knew what they were talking about. Ahhh, but this particular person did not know one thing. So here's the thing, I'm having trouble walking and my right leg drags a little because to me it feels heavy. This girl saw me out the other day and instead of asking me what was wrong or what was going on, she just jumped to her on conclusions. Well it might not be so bad but her mother in law and my mother are fairly good, close friends. So over the weekend this girl goes to her mother in law and tells her that I have Crohns. Ummm, where did she get that from?? No one ever told this girl that I have Crohns! Much less would you gather from my legs that I have Crohns. She never said anything to me or ask me anything. She just jumped to a conclusion on her own then decided to spread the word!

So of course mom was contacted and my point is if you are concerned then how about speak to me and if you just want to gossip then at least have your facts straight first before you start running off at the mouth!

Anyway on another note, this week it's off to the Rheumatologist to let him know what is going on. Won't he be surprised. I guess all he was thinking was that I might go to the Neuro in Greenville and maybe come out with another "I don't know" or perhaps some new info, but here we go off to Duke. He may not be as surprised as I think though. He's a good Dr and a good Christian and that's why we like him so much!

My mom took my kids for a little while. I'm going to rest. The rest of the week has some big plans, a friend I haven't seen in a very long time is coming to visit.

Always remember that you never know what someone else is going through, never assume, always pray and lend a helping hand!

Fresh Start

2009-08-03T14:42:00.001-04:00

I've decided to try and blog about the new journey I'm on. What new journey? Well about 2 weeks ago I went to walk with my mom and went numb from the waist to a little below my knees. Wait, let me back up. For a couple of days I was having some "pins and needles" feelings but I've had that so I didn't really think much about it. You know, the same 'ol, same 'ol. So I thought, great that's annoying. So then this other happen while I was walking and I busted out laughing and told my mom to go find my butt around the block where I must have left it. We laughed while I walked slowly home because I could barely move. By the next morning it wasn't so funny anymore....I couldn't move my legs that well and I was struggling to walk. Here I am two weeks later and my right leg feels heavy and I keep having these sensations of numbness on and off and pins and needles and it's annoying! I can't drive my car, I can't do certain household things. I'm probably doing more than I should be, but I REFUSE to just sit on the sofa or lie in the bed. I'm having to ask someone constantly to please take me here or take me there. At least no one has to wipe my butt! LOL. So anyone I did go see the Dr, yes a Neurologist. They were baffled. Go figure! My undiagnosed neurological disease (that may or may not be MS) anyway.... I'm now going to go to Duke Medical Center. I'm going to see an MS specialist. My appointment is on the 12. I'm scared and nervous and I'm also happy that this might finally be the answer after 6 years of not knowing. I figure that I'm having a hard time expressing my feelings and what exactly is going on with my body and what I'm feeling. No one can fully understand, unless you've been through this. So I'll write about it, here. I don't know if anyone reads this or not, but I can come back from time to time and read. This will benefit me and someone somewhere may be able to help me or I may help someone else. Either way, I fulfilled a purpose!!

This aint easy

2009-05-20T15:51:00.000-04:00

I just have to say that being "undiagnosed" is not easy. Having all the symptoms of MS is hard enough but on top of that knowing that there is still no clear answer is hard. I hear all the time from people, usually other MS'ers that it could be that the lesions are too small or "hidden". Makes me feel like there is some time bomb waiting to go off in my head. Not to mention the nagging feeling that I should be taking a disease-modifying drug and can't without a diagnosis. Oh this list goes on and on.

Then, oh then, there is my precious family and friends. Those who refuse to talk about it. As I like to put it, they sweep it under the rug. Let's pretend it doesn't exist and it will go away. Ah, yes, that will happen. I can see it now, if we forget long enough it will magically disappear. Why didn't I think of that all of this time? Here I was thinking to myself that while my hand just couldn't quite grasp that bottle of water, or my face was numb for a few hours or my legs weren't working quite right that if I would just think that it would go away.....it would.

I know I'm being a little sarcastic, Ok a lot! It's just that when you've lived this way since 2003 and here it is 2009 and still no definitive answer you can't help but be a little......frustrated. Most people tell me, oh it's ok to be upset. Well see I'm not really upset in a sense as I'm just downright frustrated with Dr's. I mean if you tell me you are going to do one thing and you think one thing then why not follow through? Why change your mind at the very last second? Well, I actually have an answer for that. My fellow MS group members say... BECAUSE they only practice medicine. Oh I know, that's harsh, but think about it. Everyone's body is not the same. We don't work the same way or get sick the same way. Medicine does not heal us the same or react the same. In fact I should be a living breathing case for that. My body does not like most medication. I have an incredibly hard time with medicines. Also, I'm proof that everything does not go by the book. My 10 surgeries are proof of that. So my MS should go by the book???? Geee.......

Well just something to think about and I actually think about it every now and then like right now as my feet go numb and I can't feel my toes. In a moment I'll get up to go to the living room and have to stumble because I won't know my feet are there. One day at a time I just keep saying and while it sounds like complaining sometimes, I'm smiling! I'm blessed and I'm fortunate!

Quickie

2009-05-15T12:31:00.000-04:00

No, get your mind outta the gutter! That's not what I meant! This is just a quick blog! I just had to share this little funny thing. It really has to do with spouses. Not so much mine, but just in general. I read a little funny today that made me laugh out loud. It doesn't take much anymore to make me truly laugh out loud, but this was funny and I thought worth sharing.

Recently spotted on a bumper sticker: I believe in dragons, good men and other fantasy creatures!

Oh now that was good! So just keep believing! Some things really are worth the imagination! HAHAHAHAHHA!

Nice Surprises

2009-05-14T15:53:00.000-04:00

I think it's nice to be surprised and even nicer when it's a good surprise. I never really liked surprises all that much. In fact I would tell my husband not to throw me a surprise party because I didn't really want to deal with the surprise or I'd probably find out anyway. Well I've outgrown that some and now know that it's fun to get little surprises here and there. I also have realized that life is too short to not enjoy the surprises in life.

As I've come to terms lately with just how sick I am and how my body just doesn't seem to work quite right sometimes, I want these surprises in life. You might be thinking why? Isn't having your body fail in some ways enough of a "surprise"? Well I don't want this surprise, but I've learned to live with it as I recently told a friend! There are just some things you have to "live and let go" or something like that. Learn to laugh at yourself, be silly, dance in the rain, enjoy a friend, lay with your children at night, read a good book, take a nap, walk barefoot, say I LOVE YOU!

Sometimes we don't appreciate each other enough. Lord knows I don't. I'm learning though. No, I'm not dying or anything and it's not fatal, but I've learned that when life doesn't go the way you planned that you may not always be promised tomorrow. It doesn't matter if something is fatal or not. You can be as healthy as a horse. There are things I can't do with my children, can't do with my husband, my parents, my friends and I would do anything to have the last 5 years back so that I could do some things that I didn't do.

Ohhhhh enough that! I am however going to walk in the Relay For Life! Yes, I probably shouldn't, but I am. I'm looking forward to it and it has some very special meaning to me this year. I've had one friend to say she was going to come and walk with me. I think she just wants to make sure I'm ok, but you know.....I'll enjoy the company.

I never know who reads this but to those that do, I appreciate it! I hope you enjoy it or that it helps you in some way. If you get the chance leave a comment, I'd love to hear from you.

Know It Alls

2009-05-13T16:34:00.000-04:00

Why is that people who "appear" to know everything really don't? The fact of the matter is that they only manage to get on people's nerves. I know many people like this and they drive me nuts. For instance.....if I was to tell a certain person that I have a degree in Criminal Justice (I do) then they might precede to tell me everything under the sun about law enforcement, criminal justice, the law, etc. We could get into a discussion where they would inevitably tell me that they know more about the said subject than I do even if they have either A. No degree or B. a degree in something else. Now I do not by any means claim to be an expert on anything, I mean anything at all, but if I'm talking to you about something or asking you about something why on earth would you even take time to open your mouth if all you are going to do is blabber on about a topic you know nothing about?

Also if someone is searching for an answer to something, and for this I'll be very vague, why is it that know it alls just automatically have to jump in with all the answers. They know the when, the where, the how and the why. I think the reality is that they don't know and just want to seem like they do. Is this a self esteem issue? Was this a problem as a child? Did no one ever let them speak and now they feel the need to speak on every issue even if the topic of which they speak sounds utterly stupid when coming out of their mouths? Just some questions to ponder from a not so know it all.......

Making Decisions

2009-05-07T14:00:00.000-04:00

Well it seems that tough decisions are on the menu this week in our household. It went from having to decide with Dr's about the medicine I was going to be on and how it would affect my body to.....

Now it looks as if the private/Catholic school that my 2nd grade son is at is going to be possibly closing next year. My twins were also going to be attending this school next year for preschool. In just one day I've had to make numerous phone calls trying to arrange many things for a whole years worth of schooling and for 3 children.

So what you may be asking has happened? Well for starters yesterday morning my mother went to drop my son off at school and the doors to the school were locked and no one was able to get in. No one knew why they couldn't get in either. Many parents, teachers and students were standing outside or parked outside, even on the street waiting to be allowed inside the building. All of this was with no explanation. My mom dropped my son off with other classmates and teachers and she pulled out and was immediately stopped on the street by another parent. She pulled over and was asked if they could talk. She said of course and then information just flowed! Come to find out the enrollment which this year had been around 104 will drop next year to around 35. Also about 5 teachers will be leaving.

Of course my immediate reaction is, what will happen to my child and his academics? My son is relatively smart. He has come a tremendous way in 2 years! Will you put him with Kindergarten and 1st and 2nd grade? Will you just cram everyone together? There is 1 5th grader signed up for next year and the majority of the 35 are preschoolers!! Imagine my shock and astonishment that none of us had been notified at all.

Now back to why the school was locked..... well come to find out that the Police Department SWAT team was doing a training exercise across the street at the time. They had signs up and it was apparent that they were training. The principal went balistic and locked the doors! Only, she locked everyone else OUT!!! Does anyone else see an issue here? Oh and if I haven't said it before my husband works for the police department so I can find out for sure it was a training exercise.

I'm just very sad that it has now come to this that my son is going to have to go elsewhere and that all of my children will not be under one roof as we had hoped and wished for. It was such an ideal situation, especially with one of our twins being a respiratory patient. Our oldest knows what to do and we felt confident that he could help until one of us could get there. He could also be a comfort. Now they will not be together in one school except for ONE YEAR. That's so sad to us!

Just pray for our little family and for guidance for us that we may do the right thing for our children. It is so hard raising them and knowing that the decisions you have made are right because they forever impact the people they become!

Getting By....

2009-05-04T21:01:00.000-04:00

Well what can I say other than that I just don't do well with blogging obviously. I'm going to try to change that now and really keep up with this better. I can't say it will be every day or anything, but we'll see. So let's see what's new with us. Well my children are all the same except one year older, yes each of them. The twins are 3 and mischievious as ever! They are into everything! I think there must be some written law somewhere that says that 3 year olds must destroy our homes. Mine are working on it. They have contemplated together to drag it out for the entire year! My oldest son turned 8. He is very handsome and is really coming into those teenage sort of years which is scary for Mom! He had school pictures taken recently and I swear he looked like a little man. There is this one little girl in his class that calls every so often, he swears just for homework but 'ol Mom knows better!

My husband is still much the same too and works hard and often. It's the job of the CSI and the police department must be demanding. I have a love/hate relationship with his job. Have I said this before? I love to hate it! HAHA! No, really it's a good job. It's just aggravating sometimes. You know, like when the phone rings at 2AM or when we are just sitting down for dinner and his phone beeps. That's when I want to yell "HEY this is my time!" Oh well!

So that brings me to me. I am pretty much the same with a few minor dings. Went to see some doctors and things recently and had some medicines adjusted and switched and such. Trying to get my body to adjust to them is a whole other ballgame. You know medicines come with warning labels and all this information but really your body needs one too! I walk around like a zombie for a day or two trying to adjust to the "drowsiness" of the new meds! Well it's good sleep I suppose.

My inlaws were here over the weekend and I accidentally, yeah we'll call it that, ran into the wall and my MIL asked if I did that often. I said yeah sure! Then laughed. I thought it was funny because they don't see me enough to know that actually I do do that often.

The latest from the Rheumatologist was that he still believes I have MS, but with no definitive answer we will go with.......are you ready for this mouthful....?? Severe Fibromyalgia with MS symptoms, Parasthesia and Memory Loss and maybe even throw in a little Neuropathy in there. Geee..... and I thought everything was fine?

So that's the latest from our world and I promise to try to do a little better on keeping up with the adventures that are brewing here. It's late and I'm exhausted and what are you doing still reading? Goodnight~!

2009-01-09T09:47:00.000-05:00

I don't keep up well on here. It's a new year and like most of you I'm looking forward to what lies ahead and the changes and excitement that will come. My twins are about to celebrate another birthday. We are busy planning and getting ready for that at the end of the month. They each have their own personalities and being of different genders make having a party together more challenging.

We inevitably must make it like 2 parties in one. My son will choose what his favorite thing is, party decorations, etc. My daughter gets to do the same. The cake either needs to be split down the middle and decorated accordingly or we need two separate cakes. It's also a special day because my best friend shares her birthday with them. It's a special day all around!

My oldest son then celebrates his birthday 2 (very short) months after this. He is of course at the age of boy/girl parties and mom doesn't hang around. Also he is thinking this year it would be nice if a few of his buddies stayed over. He walked in the other night and announced to me that one of the girls in his class also wanted to sleep over..... I think that was my first heart attack!

His father and I explained to him that girls don't sleep over with boys. Of course the inevitable question was "Why?" He's 7. Well....... Uhhhh.... Ask your father!

I still don't know if he knows why or not, but we'll be having a party before and then about 3-4 of his guy friends will sleep over. Perhaps that day I can go on a small vacation to a local hotel. At least all of the birthdays are done and over with by Easter!

Until next time, hope your days are as adventurous as mine!

2008-12-19T09:32:00.000-05:00

I suppose it's time for an update. With all the getting ready for Christmas and so much going on in our home the last few weeks I haven't been paying attention to writing and updating. Please forgive me!

So this week I went to the local MS group and let me say that you couldn't pay me for the experience that I had. It was wonderful! Everyone there was so kind and welcoming. They really understood me and how I'm feeling. Not to mention they had a wealth of information for me. It was great and I plan on going back next month! No matter the outcome, I fit right in!

My family is ready for Christmas and we have so much to be thankful for. You are probably asking me what in the midst of everything, but we are celebrating Jesus' birthday and my children are well and happy. We have a lot to be very thankful and fortunate for and we have very loving families and friends that support us in all we do! Not to mention our kids keep us on our toes and that in itself is truly an experience that I wouldn't trade. You know the kind I'm talking about.

My oldest son was in his school's Christmas performance last night and let me say they did a wonderful job! However, I have one gripe. If you go to a performance at a school or any organization.... Please refrain from talking or letting your children talk or if you have a crying baby please take them out. We couldn't hear a thing those kids were saying during their speaking parts and they had microphones!!! People behind us were talking (adults) and kids were talking and babies were crying! I suppose they weren't interested?

May you all be truly blessed this Christmas season and enjoy the time with your family and friends and those around you who mean so much! I know that I am!

I think I have lost it....

2008-12-11T18:40:00.000-05:00

Could it be that all of this is just getting to me? Maybe it's the fact that my husband is in the middle of accredidations at the Police Department and he's worked every night for the last month or maybe it's the new found news in my life or the holidays or...... I'm not sure what it is. I just feel like today I lost my mind. Maybe it's actually there it just got the better of me today. I got really angry at my children earlier because they dumped out all of their toys and all of the books. I'm not talking just a few small things either, it's an entire playroom full of large things and many many baskets full and small toys and I had just cleaned the entire room this morning. Perhaps it is because I'm so tired, or hurt so badly today that I thought I would pull my own hair out. Either way, I just blew up. Has anyone else ever done that? Yes this house is loud all the time and we are a "yelling" house. We always yell because to be heard here you pretty much have to do that. We are just LOUD! I just don't want this "disease" and I use the term loosely to overtake me so that I'm turning into something that I'm not. It bothers me and so do other things. Like the fact that I can't talk to anyone. My husband seems to think that it's funny and I have no one else to talk to about how I feel. How this is making me feel is so many things and there is no one to share it with.

Oh I'm rambling now and the kids are gradually getting louder...... what time is it? Oh lookie there.... bedtime! My favorite time of day! Well until the next time and like I said it's LOUD in here!

Super Mom....Not Quite

2008-12-09T12:25:00.000-05:00

So being Super Mom is definitely something to live for and live up to! We all want to wear that cape with the SM stamped on it. Our kids look up to us as Super Moms and at times we even feel as though we are. Perhaps at times not quite.... Being the mother of three and raising a set of twins at that has definitely gotten me the title of super mom at times. People will say "how do you do that?" or "I couldn't do two at one time..." The list goes on and I'm sure some of you can relate. I learned today that one of my biggest fears is coming real and it scares me to death. Being sick is interfering with being super mom. MS is taking away from so much in my life. One thing that it truly affects is my memory. I often have a hard time naming things, people, places or just recalling events. Today I forgot my son's lunch. He's a second grader. The school called and I rushed right over with lunch for him and burst into tears in the cafeteria. The realization of what I had done just hit me. Yes, I know other parents have done this before and it doesn't mean I'm a bad mother. However, I've been worried about a lot of things. What if I forget other things? Could I potentially one day forget my kids names, my own name, how to do every day tasks?

I had to take a break while writing this. I don't even know now where my train of thought was going with the above except to say that I'm not perfect, not a perfect mom and I'm quite scared. The phone rang and on the other end was the lady from the local MS group. It's never been so good to talk to someone. She sounds JUST like me. So many things in common. She is much older than I am, but yet just about every aspect of her life is the same as mine. She knows exactly how I feel and what I go through every day. She is sending me information and I just may be able to go to the meeting next week. It feels amazing to have someone else just know. I can't wait to meet other people too who are right there with me. No matter where this journey takes me, I know it will be amazing!

For Starters

2008-12-08T11:05:00.000-05:00

Well it's my first post on here so I suppose it better be a good one. It's been quite a week for my family and I. Just to start with having 3 children in itself is quite exhausting. This time of year my husband has to work longer hours and often that is quite hard. At times you may read about the occasional griping of his job. I'll try to keep that at a minimum. So this first entry is going to be about the news that I received last week. Since 2003 I have struggled with health and it's been an ongoing thing. Back and forth to the Dr I have traveled with testing, labs, medicine, etc. It's been a nightmare. Many have had conclusions as to what they thought was going on. We have our own conclusion - a medicine I took. It's documented that there are horrible side effects associated with taking this drug. About 6 months ago I was tested for MS, Multiple Sclerosis. The MRI came back negative for lesions on the brain. I was told, however, that this does not always mean that a person doesn't have MS. It's a process of elimination and based on symptoms and that it can take years for someone to have a positive MRI even though they have been living with the symptoms. So I went about normal life and felt like things were back to "normal", whatever that may actually be. That was until this past Monday when I had a follow-up with one of my Dr's. As always we went over the necessary things, changes, etc. He then informed me that he still believes we are dealing with MS. He wanted my family and I to be mindful of the symptoms and to be mindful of what was going on. He no longer wanted me to drive long distances by myself. He increased my medicine for one month and if it doesn't work it's on to something new. I will only see him every 6 months now because he is an hour away and again it's the driving issue. This time around I really had no reaction except listening and taking it all in. Last time I was so numb I drove all the way home in silence. This time my mom and children were with me. So I have been able to tell a few people what is going on and I have contacted the local MS support group where I live. I plan on attending after the first of the year and connecting with people who understand. My family is being great and on days that I don't feel well or can't drive they are right there pitching in. I'm not expecting things to be easy or for everyone to understand or "get it" right away. This is still new to me and I'm not even sure I truly get it. I know Dr's can be wrong and make mistakes but for now we are just living in this moment and dealing with what we know. I'm so truly blessed by what I have and it's taken a long time to get to where I am, I've come so far! For now I'm going to close but stay tuned..... the kids are running around and I'm sure there is a story lurking in what they are doing!