The WM Parenting Connection

by Alyssa Ast- Babies to Big Kids Expert

On Monday, I shared Alix's story with you. Since Alix was diagnosed, few questions have been answered, and even more questions have been asked. No one prepares you for what will happen or what to expect when it comes to dealing with a child who has a medical condition. There is no instruction manual and you have to take it one day at a time.

Why him? Why not me?
When my son was first diagnosed, I was consumed with "why him?" Why couldn't this happen to me instead? What did I do wrong to make him be born this way? The doctors have to be wrong. This can't happen to my child. But overtime, I knew I didn't cause this to happen. Sometimes things like this just happen. You can't choose who it happens to. I wanted answers because we knew something wasn't right and now that we have them, we would do anything to make it so it wasn't so. The doctors are right and we can't change the fact. Overtime, we have come to accept his diagnosis. No matter how badly we would like to change it we can't. All we can do is accept it and take it one day at a time. But still, what I wouldn't give to have it be me instead of him. What I wouldn't give to be the one to see all the doctors and be poked and undergo all the tests, and surgery if necessary.

My Son
How do you tell your child they are different? How do you tell your child there's something medically wrong with them? Now that my son is older, he knows his doctors appointments are different than those his siblings go to. Because of all the medical procedures and possibly surgeries he may have to undergo, we had to explain to him he's "different."

When the time came to tell my son about his spina bifida, it was very difficult to explain to him in terms he could understand, but it needed to be done. I sat my son down alone, and told him he was made a little differently than other children and because of that he has to see special doctors to make sure he's ok. I didn't expect him to have any questions about it due to his age, but let him know if he had any we would answer them as best we could. I showed him the hole in his back in the mirror for the first time, which he didn't know was there until then. He wasn't scared of it, just mad because it didn't look like the hole in his foot (a week before he stepped on a pencil). He accepted it and went on to play. He clearly took it better than we did, but I know there's only so much he can understand at his age.

My Other Kids
With all of this going on, we also had to explain it to the other children. But, how do you tell them without scarring them? How do you tell them so they don't view or treat their brother differently? We basically told them the same way we told by son but didn't show them the hole. They noticed quite a while ago that Alix sees more doctors than they do, and he has to go to far away doctors sometimes. They don't know the severity of it, all they know is Alix is a little different than they are.

When the time comes, should he need surgery, we will bite that bullet when we get there. They are all very helpful to Alix when he can't do something, and very compassionate and understanding when he falls or hurts himself. No one wants to have to put this pressure on their children to let them know there's something different with their brother, but it needed done. They had already noticed things were different with him, and if we just kept it to ourselves or lied to them about it, sooner or later they would know the truth anyway

Life around here, at least for me, has changed over the past year. I don't see my son the same way I use too. I see him as a fragile little being, trapped in a body he doesn't deserve. He is such a happy and carefree little boy, full of energy and loves life to the fullest. I can't bare the thought a physical complication might one day change him and his abilities. I hate that in someways he can't be just a little boy. He has been eagerly awaiting until he's old enough to play soccer like his brother, and now that he's finally old enough, we can't let him play until we know what's going on with his heart and spine. I want him to enjoy life the way he is suppose too. I want him to have a normal life and to be able to do normal things, but I know he's going to have to be limited in some areas. But what can you do about it? Nothing. Plain and simple, there's nothing you can do about it.

No matter what my son's future holds, all I know is I will do everything in my power to ensure it's the best and most normal life possible for him and for all my children, even through their brother has a medical complication. I've learned, you aren't alone. There are other parents in the same situation as you with the same questions and fears. I've learned it's very helpful to find these parents for support, because they understand what you and your family are going through.

Living a Parent's Worst Fear Part 2: What do we do now?

by Alyssa Ast- Babies to Big Kids Expert

When you're pregnant with a child, you always have the fear something will be wrong with the baby when they are born. It's a normal fear to have despite everyone telling you it will be fine. You're just paranoid and the fear will ease as the pregnancy progresses. This is true in almost any pregnancy, but in my case, with my second child, even after the fear eased we faced this fear as a reality when my second son, Alix, was born.

It'll never happen to you. All of your children will be born perfect, healthy and have a bright and promising future ahead of them, right? That's what I always thought and expected too. When my son was 3 days old, we were waiting to be discharged from the hospital when his nurse walked in to finish signing the papers and said, "oh, by the way, they told you he has a hole in is spine right?" Looking dumbfounded I responded, "No. What does that mean?" To which she responds, "He has spina bifida," and walks out of the room. Of course this led to an agonizing 2 hour wait for his pediatrician to come into the room so I could get more answers, but when he finally did and I got the chance to ask him he said, "No, he's fine."

That should be reassuring right? Well, there's a visible hole in my child's spine. How could that be "fine?" At his 2 week check up, I asked the next pediatrician, who said "Is there anything leaking out of it? No. Well, then he should be fine." Should be fine? This led to 4 years, over 13 doctors in three different states to find the answers to our questions.

From the time my son was about 3 months old, our suspicions over his "normalcy" started as his right leg turned in and he refused to put any weight on his legs, which led us to another doctor who told us, "I don't know, but he may never walk right," and then saw us out the door. When my son was suppose to begin crawling, he didn't use his legs and then the digestive and bowels problems he had since birth drastically increased, which were diagnosed as GERD, but we knew wasn't right either.

Once again another doctor, who looked in his arm pit when we informed him he has "a sacral pit" as that's all we were ever told. When my son began walking, the fears increased as we knew something just wasn't right. His right side just couldn't keep up and he began falling more often than he should have, so severe we almost had to put a helmet on him. Putting his teeth through his lips and tongue almost daily, knocking himself unconscious, all the broken teeth, the passing out and ER trips because he was hitting his head so hard too many times, we were told "he's just clumsy." But we knew, he wasn't "just clumsy." We knew something just wasn't right and we couldn't get anyone to listen, even as the symptoms progressed.

Finally, when I was pregnant with my 3rd son, I was going over my history with my OB and informed him about my son. Striking my OB's curiosity, he pulled my son from the waiting room and diagnosed him with a rare form of spina bifida. Finally, a relief right? We had a diagnosis. Someone believed us. But, then we were informed the condition appears to be hereditary and there's a chance the child I was currently pregnant with could have it too. Plus, the doctor now said my son's care was now out of his hands because he knew nothing about spina bifida. This led to an agonizing 9 months, waiting to see if this baby too would have spina bifida. Luckily, he doesn't but we still had no answers about Alix.

A couple of months ago, we saw a specialist who we thought would give us answers, but instead we got, "Wow. I've been doing this 20 years and this is the first case like this I've seen. I've only read about cases like this." Obviously, this was very reassuring. On top of that, it was discovered something is wrong with his heart too. Now we have been referred to a neurologist (who actually knows something and believes us) and are currently awaiting an MRI to see if my son's vertebrae or spinal cord have a defect, not to mention waiting to see the pediatric cardiologist to see what's going on with his heart.

As nice as it is to finally have someone believe us about our suspicions that something just wasn't right we still have no answers. Almost 5 years later, all we know is there's a hole in his spine, he has undeveloped muscles and needs physical therapy, and something is wrong with his heart. What does his future hold? Will he grow up normally? Will he need surgery? And the worst question of all, what is his life expectancy?

You always think, this will never happen to you. And, no one prepares you for it when it does. My son is perfect and beautiful in my eyes, but since we have learned his diagnosis, he now seems so fragile. Although we have more answers than we had a couple of years ago, we are basically still at the beginning of our journey. This journey doesn't only affect my son, but the rest of my children and extended family as well.

Check back on Thursday to learn more about Alix's story and where we are now.

Living a Parent's Worst Fear Part 1: Alix's Story