What Is So Wrong With Having A Disabled Child?

Lately there has been a lot of talk going on in blogger world about premature babies being called fetuses. As the mother of a premature child this is heartbreaking to think that some doctors still consider a living, breathing child a fetus. However in the medical world there is ALWAYS going to be controversy over any topic that is to be discussed. Many preemie moms have blogged about there disgust and their anger with premature babies being called fetuses. On one blog I had made a comment that the anger that they feel towards this is probably like the anger that I feel towards these same moms worrying over the possibility of their child being disabled later on in life.

It was after this comment that I received quite a few emails from preemie moms telling me that they never thought of how their constant worrying felt to a mother of a child with special needs. In many blogs that I read I find that so many people are against the idea of having a child with a disability. There is also always the discussion about the doctors telling parents that they can discontinue care because there is a good possibility that their baby will be disabled. I have also read a blog where the parents chose to discontinue care on two of their preemies because they had grade three and four brain bleeds. Their exact words were “we chose to discontinue treatment to put them out of misery.” I have also read a parents words stating that “we chose to discontinue care to end their suffering.” WOW how can a parent know how the baby is feeling. How can a parent discontinue care because there is a chance their baby will be disabled? I say chance because there is always the possibility that the doctor ISN’T going to be right. I also know two former preemie boys that had significant brain bleeds and are pretty much the typical child.

When I read things like this it breaks my heart. It is hard for me to feel for these parents when they are the ones that chose to stop care. They are the ones that decided that since there is a chance their child would be disabled they would rather not deal with it. They would rather not put them through the pain and suffering. It breaks my heart the most because they don’t know what they are missing out on! A is one of the happiest kids that I know. And I am not just saying that because he is my son but because it is the truth.

It also breaks my heart because a child is a child and it shouldn’t matter what is wrong with them. It shouldn’t matter if they aren’t “perfect”. That is why we as parents are supposed to love unconditionally. Choosing to end a life because of the possibility of a disability is not unconditional love. Unconditional love is standing behind your child through thick and thin and loving them no matter what.

Now, not to sounds heartless, but I totally understand that some parents have to make this hard decision because of the significance of the brain bleeds. I understand that some preemies are very sick and have absolutely no chance at living. I feel for the parents who are told that their son or daughter has absolutely no chance because it is something that I cannot even imagine dealing with.

But to make the decision based of the fact that there is a “chance” is just not right. I have also been told that I must have worried while A was in the NICU about the future he would have. I was thinking of this last night. And actually, there wasn’t ONE time that I worried that A might be disabled. I think the only worry that I ever had was that he wasn’t going to make it out of the NICU. Spending 227 days in the NICU and having date after date given to you about when he can go home by and not making those dates was heartbreaking.

We had one meeting with one of A’s amazing doctors near the beginning and we were told that there was a good chance that A would be disabled. A good chance that he could have vision and hearing issues. He was a VERY, VERY sick little boy and there wasn’t much hope. We had the choice to continue with treatment or to end treatment. There wasn’t a chance that J and I were making that decision. We wanted everything done for A possible. J and I thought no different after that meeting and knew that whatever was to be would be. No matter what was wrong with A we wanted to have him in our life. It didn’t matter to us what was wrong with him in the future. We lived for each day in the NICU and we still continue to do the same thing. You can’t always live life looking ahead. The best times are when you just enjoy each moment of each day.

Now, I do know that for parents of preemies it is normal to worry about their next growth and development check up. I know that there are many that worry their child is behind. And when I read constant worries that their child may have CP or some other issue it hurts. I realize that parents want to have “normal” children and I realize that dealing with disabilities can be scary and difficult. At the same time though, it doesn’t change how you feel about your child. It doesn’t change the love you feel and the joy that they bring you. And honestly I feel that we as parents of disabled children are able to enjoy more than the average parent. I say this because everything that our children do is amazing. We don’t take one little thing for granted. Parents expect their children to do things as they age and they expect this to be on time. Disabled children however do not have a chart to go by. A rolled from back to tummy for the first time a couple of weeks ago. He is 26 months old. I was ecstatic! To the normal parent this is late and is just expected of their child.

A ate three teaspoons of baby food three weeks ago. This was the first time in six months that he took ANY food by mouth. I had the video camera out, I was taking pictures, I was phoning everyone, I was overjoyed. Once again parents don’t realize how great it is to have a child that eats normally. It is expected.

I just hope that I can help at least one parent realize how good they have it. I hope that the next time their baby won’t take a full bottle that they are thankful they are drinking from a bottle and not through a tube into the intestines. I hope that the next time their child does something new they are excited and enjoy the moment. I hope that the next time their baby wakes up twice in one night they can hold them and love them and not be upset that they didn’t sleep through the night.

I also hope that any new preemie moms can learn to enjoy each and every moment that they have with their precious tiny babies. You never know what life is going to throw your way and if you worry too much about later on, you might not even have later on to worry about. Sit with them, read to them, sing to them, talk to them, love them and do everything that you can. Be their biggest advocate and fight with them.

I have so many people ask me “what is wrong with him?” Nothing is wrong with him. I have the people who are told that he has CP and they say “awww the poor thing.” No, not the poor thing. He is happy. He does not know any different than the life that he lives. (And as you CP mommies would say “Poor baby my ass!”)

A has taught me so much in life. He has taught many others in life a lot as well. When I have the chance I try to educate people. I try to help people realize that the disabled aren’t any different than you or I. Sure they may not walk, they may not talk, but they do have feelings and I just wish that the fear of disabled people was one thing I could change. So many people are afraid because it isn’t something that they see all of the time.

I used to find myself explaining the whole story of his life to anyone that asked what is wrong with him. However as time has gone on I have found that I almost forget that he has a feeding tube when we are out and people are staring. I almost find myself asking what they are looking at. I absolutely hate how people stare at him as we walk by. Do they stare at every single child that they see? No, but A is different so they do. Sometimes I wish I had a sign telling people to quit being so rude and just continue walking.

I am very proud of A and love him the way that he is. I know as he gets older things are only going to get harder because things will become more obvious (the wheelchair) and he is going to grow up. I want him to live a normal life. I want to see him treated the same way that he would be if he wasn’t disabled.

No one knows what the future holds. But there is one thing that I do know, and that is I am so happy that I never chose to discontinue care because I would be missing out on the best part of life. A.

And besides, who wouldn’t want to watch this precious boy sleep?

14 responses

  1. Anonymous

    You are honest, real and dedicated. Everything the mother of a disabled child needs to be.Congrats on the love and dedication that you have! Your son is very lucky to have you as his mother. I am sure that we will continue to read of the success he has in life. Determind mommy=determined child.

    August 17, 2007 at 3:51 am

  2. Emily

    Coming from someone who is currently dealing with their child’s developmental delays/possible CP, I will say that the idea of having CP doesn’t really bother me. We chose to continue care knowing that she most likely would have issues. That was our choice and I certainly don’t regret it. However, with that being said thinking about your child possibly having CP or another disability doesn’t change who they are, their personality, how much you love them, anything like that. It does however mean that you have to change your thoughts of their future. Yes they can most definitely be a productive member of society however dreams of them leading a “normal” independent life are erased. You have to accept a different future and for me that’s the hardest thing to accept. I think there is a bit of mourning process for the life you once thought they’d lead and the one they are going to lead. Not to say that there’s something inferior to the life that disabled people leave but it is different and physically, harder.I will say that I have learned so much from reading your blog. Ashton is one of the happiest babies I know and you are unbelievably strong. Every person must deal with their feelings and emotions differently. I can see how to you it would be a slap in the face for people to worry about their children being labeled as disabled however it’s definitely not intended that way.

    August 17, 2007 at 3:55 am

  3. Sammie

    I don’t care for watching him sleep… I’d rather see that big smile he has! lol. It’s the main reason I vist the blog, for pics of him smiling!

    August 17, 2007 at 4:09 am

  4. 23wktwins'mommy

    Shannon,I am happy you chose to write this blog; it is important to write about your feelings and your situation, and how you are affected by others.I have been very open about our NICU experience, and the difficult choices we had to make. I would not have permitted Edwin to have his PDA ligatated had he continued to be on maximum support on the oscillator (I’m pretty sure they wouldn’t have been able to do the surgery anyway.) This is because he was purposely unconscious and on an IV drip of pain medication and was in serious respiratory distress. He was maxed out on the vent. In other words, any more pressure used to open his tiny lungs would have burst them open. I wasn’t going to allow him to die that way, nor in surgery. He was going to die in our arms, without the trauma of surgery or tiny puffs of air being forced into his 1 pound body to no avail. I wanted more than anything to take both of my children home, but I listened to the Drs about the possibility that we would get to the point where Edwin would not have been able to ever have the lung capacity to make it off the oscialltor and he would die on the vent. We consented to a DNR during those difficult days, because if his heart stopped, we weren’t going to bring him back using IV drugs just to put him back in the same situation…maxed out on the vent. I looked at it like, we are giving all the support we can medically give him, if his heart stops he is showing us he just can’t fight anymore. One night I got very close to his little body and whispered to him “I love you son. I want you and your sister more than anything I’ve ever wanted in life. I love you with every ounce of my being. I want you to live. But if it’s too hard son, if the pain is too great, I want you to know it is okay to stop fighting. We are very proud of you, and we love you no matter what.” It was so hard to say that, but I had to.I can’t express how thankful I am that his heart didn’t stop in those few bad days. After he made it off the oscialltor, we removed the DNR.I think every NICU parent has to come to some very difficult decisions about their child’s care. We were never faced with grade III or IV brain bleeds, but knew the good possibility that our children could be disabled. We were told Edwin had at least a 70% chance of having CP. Serena had a bilateral grade II bleed, and we consented to steroids for both children. Add that to the fact they were 23 weekers, and the odds for not having a disability are slim.I am so thankful my children are alive, but that does not mean that I don’t hope they meet their milestones and are able to live independently some day. This is not a selfish desire. I worry about what life will be like for them when Edwin Sr and I are gone. I’ll bet this is why parents worry so much about the future, and sometimes can forget to focus on today. As a parent, as much as I can, I want to shield my children from physical and emotional pain. I can’t deny that I hope they will walk away from their prematurity with the fewest complications possible.That’s why I get excited, celebrate, and announce every milestone. Like you said, every new thing your child does, no matter the time frame, is exciting to preemie parents especially. Every little thing they do amazes me. When Serena reaches out to touch our faces, her Dad and I melt. When Edwin giggles and smiles at us, our hearts smile. They love us, they are bonded to us, and they know they can count on us for anything. That makes me so happy.I will love my children no matter what. I feel good about the decisions we made for them. I hope they continue to thrive and show us how happy they are. But no matter what, they are our babies. They are our world, and no diagnosis will ever change that.

    August 17, 2007 at 4:30 am

  5. Melissa, Josh, Owen and Nathan

    Ok it’s not even 9am and I am sobbing. lol Shannon your post was awesome. I am amazed every time I read your blog by you and cutie pie Ashton. Nathan was not a micro preemie but a 33 weeker and certainly did not struggle as many of the preemies I have read about in blogs, but he does have CP and let me just say that I could have cared less if he was ever diagnosed officially. The only thing the documents given to me by his paed. saying “he has cerebral palsy” changed, was that I was now able to get assistance from the government to get extra therapy or care for him. That’s it. It certainly didn’t change how I thought of him, how much I loved him or how I saw his future. He was still my little Nathy Babes, developemental delays and all. He is the most precious gift ever given to me (along with his 2 older brothers)and 2 days ago when he took his first steps with a walking aid, I could have run through the streets I was so thrilled. It doesn’t matter to me that he is almost 2 and this is something he should have been doing a year ago. We make our charts. He reaches milestones when he decides to reach them and that is perfectly ok with me. For those who think our babies are unfortunate souls, I say their loss. Our sons have smiles, giggles, and blue eyes that would melt anyones heart. If people can’t see that, well then they are the unfortunate souls.

    August 17, 2007 at 1:12 pm

  6. Anonymous

    Wow is about all I can say right now. You go girl!

    August 17, 2007 at 1:46 pm

  7. Anonymous

    Well said.-Vickie

    August 17, 2007 at 3:27 pm

  8. Miracles

    Shannon,I am so glad that you have chosen to talk about this. Over the past month or so I too have read so many comments and concerns of preemie parents about them worrying about whether or not their child may or may not be disabled.When I was pregnant with the girl’s I did, to my knowlegde everything right. When I was 13 weeks pregnant I requested to have the IPS test to check for down syndrome & spina bifida. My OB looked at me as if I was crazy. He sat their and tried to talk me out of it. I knew exactly what he wasn’t saying which was “you would have an abortion if it came back positive?” That was not the case at all. We wanted to know so if the test came back positive we could educate ourselves on how to be better parents to a child with these types of needs. He just automatically assumed that I would terminate. Mind you, he always threw out the term “high risk” because I was carrying multiples but never once mentioned premature birth.When the girl’s were born 3 months early I felt so uneducated on prematurity, that it made me feel as if I was alone in the entire thing. Even though I was surrounded by other babies and parents. After the first week of the girl’s lives the docs came to us and told us that there was a chance we might lose Olivia. They also told us that if she survived, there is also a good chance she may be blind, deaf, have CP, etc. I never once thought of ending any care for her. I WANTED HER NO MATTER WHAT. I chose to get pregnant, I chose to bring a child into this world. So I had to except that she may not be like every other kid I knew. As soon as I was told this, all I wanted to know was how can make her life as “normal” as possible. I wanted her to have the same opportunities as Avery would have. The response I got was once I got her home to stimulate her as much as possible. That’s exactly what I did. I’m not saying that it worked but that I that was willing to do anything that she needed, so I did. I didn’t bring her home and wait for signs that she may be disabled. I enjoyed every moment with her and cried at times uncontrollably at the little things such as a simple smile from her. To me she was perfect! and as you said what was to be would be. There was no changing it. It truly angers me when I hear other mothers wish they had of ended treatment or one’s who did because they couldn’t handle their “perfect” lives not being perfect anymore. They are the one’s who need to look outside the box and see that life just isn’t perfect. Whatever card we are dealt we deal with it. I feel sorry for the children who are living with these types of parents because I don’t see the child benefiting from such unhappy parents. If I had of chosen to end treatment, I would have missed out on such a sweet and beautiful little girl inside and out. Just the other day I had the girl’s at the park. A father showed up with his two children one was running around and the other looked as if she may have had CP. From the moment I saw him he seemed frustrated at the fact that his daughter required more attention than his son. I tried to pursue a conversation with him and he wanted nothing to do with talking. I do understand that their are people in this world who are not use to dealing with children who have special needs, but I’m not one of them. My children’s lives could have been very different. I know that. It frustrated me that he could not see past the fact that his daughter needed to be pushed on the swing while the other one did it himself. That he had his head turned the entire time while she smiled on the swing. She found such enjoyment out of something so simple and yet he seemed so miserable. I truly felt for her. It made me think of the preemie moms who fear things they have no control over. Every child deserves oppourtunity, whether they are disabled or not. They deserve to be at the park with all the other kids, they deserve to be apart of the activities that non-disabled children are apart of, and they truly deserve some respect just as other children get.

    August 17, 2007 at 4:05 pm

  9. Growing Your Baby

    My husband and I tried for 4 years to get pregnant. After that long road I finally got pregnant and a doctor almost messed it up.The trauma caused by the doctors negligence abrupted my placenta. I was hospitalized for 4 weeks before our 24 week deliver and was transfused 6 times in 2 weeks.I refused to have the down’s test done and didn’t want to hear any negative crap from my OB.After my son arrived 16 weeks early we learned that he had a level 4 brain hemmorage and would most likely be disabled. The nurses used to say that I just didn’t get how sick he was and that my head was in the clouds.What they didn’t know was that I DID know how sick he was, I just chose to believe that he would someday come home with us.After being on bedrest for 6 weeks, having my son almost die countless times it no longer mattered what happened. He was the baby I was given and he was the one we were going to love.Some people just can’t live if everything isn’t perfect. My son has made me a better person, a better mom and a better wife.He is a thriving 2 year old that still has some small issues.I wouldn’t trade his unexpected beginning for the world because I wouldn’t have learned the true meaning of a life.Parents who chose to disconnect because of a simple brain bleed don’t have the Kohonas to be good parents anyway.My son’s brain bleed healed itself. This sometimes happens with preemies because there is still so much brain development to occur, the brain is able to recover from an issue early on.Does no one have faith anymore?

    August 17, 2007 at 9:22 pm

  10. Kathryn

    Shannon – well said! You go girl and I am right there with you!And, it’s GREAT that he ate by mouth!!! I know what that is like when it FINALLY happens! You’re such a great mom. Ashton is lucky to have you. And my god -he’s getting big and he’s such a cutie pie!Kathryn

    August 18, 2007 at 1:21 am

  11. baby james

    Shannon, I relate to all you are saying. All though we share different issues I get stares just with James wearing his glasses and being so young. I know it is not the same but I see where you are coming from. In fact I suppose I am guilty for stareing before but I now have a whole new outlook. I think you are a wonderful person and mother and you are so strong must be where ashton gets it from. Tracy

    August 18, 2007 at 5:56 am

  12. Fiona - Moment by Moment

    Wow what a great blog you have. I am the Mummy of a 27weeker now 19months. I suppose people have fears so they express them. I do remember being a bit worried about it. I suppose with all of this none of us expect to face it so its all a little scary. Its like those saying I don’t want to have a premmie well no one really wants to but if you do you just got to learn to deal with it. I am of the same belief as you that they are your children and nothing would ever change that. There are parents who may blog/say things that in pure frustration because they need to get it out. I was never put in the situation to turn off a machine but I think like the mum here replied to you she whispered to her son that it would be okay if he was not strong enough to let go. I could see myself doing something like that but again none of us know how we deal with it till it truly happens.It is sad there are so many misconceptions and its just due to lack of understanding. I try to use what happened to us (pre eclampsia and HELLP Syndrome forced the delivery of my baby) to educate others become an advocate for the cause etc. I am sure your really busy and just fed up with the way people are. I would really love it if you could maybe write an article for me. I run a website in Austrlia called Moment by Moment. I want to offer articles/information on all things that may effect premmies and CP is one of them. This would be a great tool to teach people both parents and the general public what your life really is like. I hope thats not too forward of me to ask but your writing is really captivating and you have dealt with it first hand. I am sure you would be able to reach thousands with your words of wisdom. Your an awesome dedicated mother who has experienced a lot and although it was a rough storm your beautiful rainbow has appeared and isnt he magnificent. Like any mum you see past everything else and see them the beautiful baby that they are, thats what makes you a Mum.Big Butterfly Kisses to Ashton from Airlie Fae aka the Butterfly Princess

    August 19, 2007 at 4:25 pm

  13. Jacqui

    Shannon,Great post. I run into similar views often and I do believe that the medical fraternity needs to rethink the way they look at disability. But it is also a much deeper issue then that.It is hard to hear other prem parents talk about CP as being the worst possible occurance in the world (and to even keep harping about it being a possibility way after the kiddie is walking, running and riding a bike).

    August 20, 2007 at 8:47 am

  14. 1stson24weeks

    Hi ShannonI am new commenting on your blog, but I have been following you and your son for a while now. I got your blog from 23wktwinsmom. She has been a wonderful help to me. Anyway I am recently a mom of a 24 weeker. I have a long story but won’t stuff your blog with it, but I do want to say that I agree with EVERYTHING you said!I can’t even begin to understand what you are going through because I have been very lucky with my sons health. What I can say is this, I was admitted to the hospital at 20 weeks 2cm dialated and membranes bulging. I was on COMPLETE bedrest in a 5 degree incline feet up, so that gravity would keep my water from breaking. I was not able to get out of bed for ANYTHING I was not even able to sit up, but I didn’t care. I was going to do whatever it took to save my child. Everyday doctors would come in and say “don’t do this to yourself and your family, even if you do make it to viability your child will be so severly diabled, he will have NO quality of life, he will have breathing troubles, brain bleeds ets….” They told me there was close to 100% “chance” of him having CP, and all kinds of other disabilities. And every day I had to listen to them try to tell me to terminate my pregnancy, my “fetus” as they called him. I refused of course, this was my child, this was a person, not a fetus and I was determined to do what ever it took. I believe that god has chosen us preemie moms to care for these children disability or not because he knows we are right for the job and that we will love these children unconditionally! In the end we were very lucky, I DID make it to viability 24 weeks and after a 103 days in the NICU which is nothing compared to you my son is home and pretty healthy. But even if my son does end up with CP or some other disability it will NEVER change the love I have for him. Sorry to take up so much space but I just wanted to say that you and other preemie moms have been such an inspiration to me and I just want to thank you and congratulate you on your handsome son! Keep up the good work!Erika

    August 20, 2007 at 2:54 pm

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