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!
Wednesday, October 20, 2010
Monday, October 18, 2010
Where to start?
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.
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.
Monday, October 11, 2010
It Matters
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!
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!
Tuesday, October 5, 2010
Helping Hands...
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.
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.
Monday, October 4, 2010
Timing is Everything!
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
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
Subscribe to:
Posts (Atom)