Would You Change Your Child? Ugh, SOOO Frustrating!

Well it has been a very interesting day. A didn’t get up until almost 10am and wanted to go back to sleep at about 12:30pm but I had to get him ready to take him to the ped. So things went good there. He got his RSV shot and did so well! He held his breath for about thirty seconds but he didn’t even cry. I talked to his ped about the vomiting and the low grade fever but he didn’t seem too concerned. With A I have learned how difficult it is to get answers on him. I asked him for a prescription for Zantac to add in to possibly help with the reflux a bit more. I really am starting to go crazy with all of the throwing up. The dry heaves and gagging is also taking its toll on me. It is so hard to deal with! I can’t even imagine how A feels when he is the one doing this all of the time. So we will be going back in a month to tell him if there is any difference with the Zantac. I am not too hopeful as it is only an H2 Blocker, but maybe it will give a little more relief. I know that the stuff he has been throwing up for the past month is very acidic because of the smell of it.

Anyhow today was kind of a crazy day on the Internet. There is a lot of talk still going on about what I discussed yesterday. However it has more or less turned into “would you change your child with special needs?” WOW what a debate that has caused! I was reading a blog that I do daily and it was saying basically how people are crazy if they say they wouldn’t change their premature babies life. Then it went on to saying how she hears parents of special needs children say that they wouldn’t change a thing, and she couldn’t understand that.

So I felt that I had to comment. I basically said that I was one of those moms who said that and I meant it. I said that A is who he is and if he were any different than he is now then I wouldn’t be the mom that I am and he wouldn’t be the child that he is.

I went back a while later and there was a comment back saying that she wasn’t disrespecting anyone but she just didn’t get it. Then it said that if I was comfortable watching A in pain then she was happy for me! I couldn’t believe it! I NEVER said anything about seeing him in pain. I said that I wouldn’t change him. Sure I wish I could take the pain he has away but wouldn’t any mom do that if she could?

Next a lady said she wondered if I would be saying the same thing when A is 21 years old. Give me a break! I think that my acceptance with A and his issues has brought me a lot further than some of these moms have EVER come with their child’s disabilities!

So I decided to post a question on the reflux parent group that I am part of. Of course it was directed at the moms with special needs kids. WOW, it sure has had a lot of comments! I would say it is half and half. Very interesting to me…I don’t think badly of anyone that says that they would change their children, so I don’t think it is fair to people to jump all over me about saying that I wouldn’t change a thing.

You know having A at 24 weeks, spending 227 days in the NICU, being in the PICU, finding out he has cerebral palsy, finding out that he is deaf, finding out that his eyes aren’t the greatest, having him on a feeding tube makes him the little boy that he is. This whole ordeal from June 10th 2005 until now has made me the strong mother that I am. I can’t even begin to tell you how much A has changed my life. How different I am as a person. How I look at life SO SO differently now.

Anyhow I think I have rambled on and on enough. I just get so frustrated with topics like this. How many times do I need to say that having a child with special needs is not a bad thing!??!

I am the luckiest mommy in the world to have this gorgeous, happy little miracle!!


9 responses

  1. Anonymous

    I agree shannon on oyur outlook with our children. There was a reason god gave us his little miracles. Ashton is very handsome and I am so glad to see you got the stander and how happy he looks to be able to see his world in a different way. You are wonderful and so is Ashton you can see it in him and how well you care for him. Keep up the good work you two and forget what everybody else says. Who cares! LOL Tracy

    March 16, 2007 at 5:16 am

  2. Miracles

    I think if these mothers stopped feeling sorry themselves for just a minute, maybe then they might enjoy their child for who they are. These kids are so innocent, they didn’t ask to be this way. It’s unfortunate their parents can’t see past their own selfeshness.Keep commenting Shannon, you might just be able to get through to one of those parents out there.

    March 16, 2007 at 12:09 pm

  3. Anonymous

    Would You Change Her? All this debate about whether or not you would change your child with disabilities, has prompted me to write a response into the wee hours of the morning rather than catch up on my sleep that I’m so often deprived of. Before I answer the question which most likely has no right or wrong answer, let me give you some background information. Nineteen months ago I gave birth to a set of twins delivered prematurely at twenty-six weeks. On that dreadful night I was told there wasn’t much they could do for twin A, it would be a miracle if she survived the night, and if she did survive she would most likely have severe disabilities. Then I was posed with a question that no parent ever wants to be asked…“do you want us to continue care? Or do you want us to stop, so that you can at least hold her and say good-bye?” I was unable to say anything, completely caught off guard by the question. My husband stepped up and said “no, keep doing whatever you can to help her?” We got our miracle and she survived the night. Over the next few days I ponder the question. Am I being selfish for wanting to keep this child alive? Am I being selfish if I let this child go? Again there is no right answer, and anyone who thinks they know the right answer has an enormous ego, a “greater than God” complex. Five months later one little miracle came home, while the other one was still in the hospital starting to make some progress, until death once again came knocking at her door. The doctor pulled us aside and told us she might not make it through the night, and there was a ninety percent chance she would have severe disabilities. Again we were posed with the question. “Do you want to continue with care?” I answered with an emphatic “yes!” I was then looked at as if I was a complete moron, and asked, “Do you know what the future will entail for her?” Then I thought to myself, “No, doc let me call the f@*king psychic hotline maybe they’ll have the answer”. Then the doctor kindly reminded me that I had another child to think about. I just sternly replied “I’ve thought about how it would affect her sister , how it would affect our family, I’ve thought about the next twenty years, I’ve thought about where she would go to school, I’ve thought about the finances, I thought about how a shift in government could change our healthcare system, I’ve been doing nothing but thinking! You do whatever you have to do to help her!” To which the doctor replied “I hear you loud and clear.”So fourteen months later my little miracle isn’t walking, talking, eating or even breathing on her own. She’s severely disabled, medically fragile, technologically dependent, whatever label you want to put on it. Would I change her?Would I change her?…sure! But what price would it come at? She would grow up like any other kid. Would she find happiness in material things, instead of finding immense joy in the simple things? Would she stay pure of heart? Or would she lose her innocence like most of us? If she grew up healthy would she be protected from life’s cruelties? There is no guarantee of that. If I changed her I wouldn’t be half the mother I am today. I’d be rushing around keeping up with the Jones, I wouldn’t know to appreciate the little things I once took for granted. I wouldn’t see the beauty in simplicity. If I changed her would my love for my children be as rich? Would my faith be as strong? Would I have realized that there still are good-hearted people in this world, beautiful souls that are willing to help? Would I be oblivious to what’s really important in life? Once again, if I could would I change her? I don’t know if I would. What I do know is that I can’t change her, but she’s changed me. I feel truly, truly blessed. No words could describe the feeling I experience when she flashes me one of her huge smiles. The sense of pride I feel when that same smile makes all those around her feel joy. She is making a meaningful contribution to society, she’s teaching people important lessons without saying a word. When you see a differently abled person, don’t pity them. Their minds and their bodies may seem weak, but their spirits radiate strength! That I am grateful for. Vickie C

    March 16, 2007 at 1:54 pm

  4. Anonymous

    Shannon,You need to print off some wallet size photos of Ashton and start handing them out to people. Then when people are having a rough day they can look at the photo and it will make them happy. He’s so beautiful!-Vic

    March 16, 2007 at 3:06 pm

  5. Anonymous

    Shannon, what a great post that you have written. I don’t even know what to say in response. I think that you are so strong in your views about not changing Ashton because of the love that he has brought to you and you to him. It is so obvious from all of your other posts and pictures that you two share something that not all parents do with their kids.I give you credit for standing up for what you believe in. I am sure as parents we all would take away our childrens pain but it surely doesn’t mean that we have to take away their disabilities.You are such a dedicated mother to Ashton. For you to say that you wouldn’t change his issues shows that you have accepted what God has given you and keep on heading down the road of life.For you to say this also shows the immense love that you have for Ashton. I know a few moms with kids that have needs who are older and until this day they cannot accept it or live with it. I sometimes feel that it is attention that they are grasping for.Ashton is sure to live a wonderful life with a mother like you. You seem to treat him as if he is not disabled. This will take him far in life. It is the parents who are upset and angry about having a child with special needs that pass that on to their children. So many of these kids could be happy even though they suffer, but they can’t because their parents feel sorry for them.Keep up the good work Shannon! I love coming to see what is new in your life with Ashton.Anne;fellow preemie mom

    March 16, 2007 at 3:25 pm

  6. Miracles

    WOW! I am in tears right now at Vickie’s response. Another great mom out there! Someone else who truly appreciates every breath her children take. Good for you Vickie!You need to start a blog of your two little angel’s so the rest of us can share in your joy.

    March 16, 2007 at 3:26 pm

  7. Anonymous

    Just because a parent doesn’t seem to accept a child disability does not make them less of a parent than anyone else. I have seen parents who accept things as they are and as a result their children suffer – they don’t get services that could help them as quickly.I know which blog you mention in your post and know its author and I can assure you that just because she says she would change the pain and suffering her child went through does not me she doesn’t appreciate how the experience has molded them and their relationships.It most certainly isn’t ‘selfishness’ to want your child to be normal. The truth of that matter is that our society does not offer enough support to families of non-normal kids.When your child reaches the age of the children that the mothers in that other blog (20 years+) you may see your attitude change.

    March 16, 2007 at 8:54 pm

  8. Shannon

    I need to respond to this post. It is funny that you also display what you have to say anonymously.Anonymous said “Just because a parent doesn’t seem to accept a child disability does not make them less of a parent than anyone else.”I never said this at all in my blog. But I do think acceptance does go a long way when you are speaking of raising a child with special needs. Anonymous said “I have seen parents who accept things as they are and as a result their children suffer – they don’t get services that could help them as quickly.”Hmmm sounds a little strange to me. I would think the total opposite. Parents who accept a disability are willing to do anything to help…just MY opinion.Anonymous said “I know which blog you mention in your post and know its author and I can assure you that just because she says she would change the pain and suffering her child went through does not me she doesn’t appreciate how the experience has molded them and their relationships.”I know that she appreciates her life experience and the relationship she has with her child. I respect her writing. I know that everyone has their own opinion, and that is how all of this started. I stated my opinion and got jumped on over it. Pain and suffering was also not the issue. That is not a disability. I am sure that any parent would take away the pain their child has.Anonymous said “It most certainly isn’t ‘selfishness’ to want your child to be normal. The truth of that matter is that our society does not offer enough support to families of non-normal kids.”I never ONCE said anything about selfishness. If you are referring to “miracles” like I have said before, EVERYONE IS ENTITLED TO THEIR OWN OPINION!I don’t know if *I* would use the word “selfish” but I can say that I know their are parents out there who just feel sorry for themselves, their children, their lives….there are parents who want the “perfect” child and have issues when it doesn’t turn out that way. The world is far from perfect so I think selfish would fit for SOME.As for the support out there. Sure it isn’t perfect (but doesn’t this go for a lot of things when it comes to the government?) either but there is TONS of help out there. Here is the problem. As a parent you have to advocate for you child. You have to push for services. You have to bug and bug. Some parents don’t want to be bothered. SO, for the parents who want the help, it is there. Everything in life isn’t handed out on a platter. You need to fight for what you want sometimes don’t you?Anonymous said “When your child reaches the age of the children that the mothers in that other blog (20 years+) you may see your attitude change. “My attitude won’t change. I am going to raise Ashton to the best of my ability. I am going to give him the life that I would give any child. Sure there are challenges and there will continue to be, but that isn’t going to stop me. As long as Ashton is as happy as he is now that is all that will matter….

    March 17, 2007 at 4:38 am

  9. huether family

    shannon i think that people are not realizing that there is really no such this as a “perfect child”. every child has something that they either have truble with or has to over come. some children just have more to overcome than others. my son was born very healhy, a good weight, on time never showed any problems until he was 6 months, so i guess up until that tine he was the perfect child, and now we have to go for test because he has hearing problems, has speech problems and has heart problems. he is four now and you would not know that anything was wrong with him.he’s a very happy child and shows no sighs to eveyday people that he had any of these problems. i as a parent let him decide when he’s had enough, i do not ever limit what he does and let him try everything. no matter what your child has going on is his/her life its up to us as parents to help them thru it, even if that’s pushing them to do their best at something. i have four children and i can’t say that any one of them is perfect they all have something that we have to work on, but in my eyes as their mom they are perfect just the way they are.

    March 17, 2007 at 2:25 pm

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