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!
Sunday, May 1, 2011
Tuesday, April 19, 2011
All about Thomas
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
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?
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.
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.
Thursday, April 7, 2011
Things are going to change
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.
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.
Monday, February 28, 2011
The Vacation From ......
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!
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!
Tuesday, January 4, 2011
New Year...New Trials...
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
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
Tuesday, November 30, 2010
Friendship is Love
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.
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.
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