Lessons From The First Year Of Down Syndrome: Kids Are Not Their Diagnosis

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One of the scariest things to encounter as a parent is a diagnosis that you know little about, or that you think could have a significant impact on the quality of life and potential of your child. When Kim and I received the news that our little guy has Down Syndrome, it really rocked us.

For me, I had feared this specific diagnosis since I was a kid. I didn’t know much about it, just that the kids with Down Syndrome looked different from everyone else. I can remember watching Life Goes On, and seeing Corky, and hoping that I never had a child with this challenge.

Now, much later in life, we were excited to expect the third boy God was going to bless us with, but the news of the diagnosis was like throwing a wet blanket on a barely burning fire. From that moment on, we had to begin to come to terms with what was going to come.

Fear: The Biggest Hurdle

Fear has to be one of the biggest challenges about Down Syndrome. There is so much to fear: medical problems, learning problems, social challenges for the child, social ostracism for the parents and siblings, and more.

Part of why this fear hits so hard is because there is so much still unknown about Down Syndrome, and how it affects the people with the extra chromosome. Sure, doctors know what to look for, and there are plenty of studies around what could happen, but you just don’t know what is going to happen with your child until it gets there.

Really, this is no different than parenting any other child. However, when you have a child with Down Syndrome, you are told about all the things that could happen, and the statistical probabilities of how long their life will be. This can be really scary and hard to hear and handle. After all, all you want to do is snuggle this little one that is going to be a blessing to you and your family.

The reality is that there is a lot more a child with Down Syndrome is susceptible to, but that doesn’t mean it will happen. It just means there is more to watch on a proactive basis, rather than waiting for some symptom that something may be wrong.

Going Beyond The Diagnosis

Our little guy is just shy of a year old as of the writing of this article. That said, he is doing so well! He loves to smile and giggle, much like any other 12 month old. He loves his brothers, and gets a big smile any time they come near and are interacting with him. He is beginning to feed himself, and is babbling, letting his voice be heard throughout our home.

In other words, he is a little boy who is growing, learning, and loving. It is still hard not to think daily about the fact that he has Down Syndrome, and some of what that means, especially with continued doctor’s appointments. However, it is easier to see him as a little boy who just wants to grow, love, and have fun.

If you aren’t to this point with your own child yet, that’s okay. It takes everyone a different amount of time to come to the point where your child is just your child, and not the diagnosis that you are dealing with. Keep up the hope, mom. Keep fighting for your child, dad. You got this, and your little one, like all little ones, depends on you, and just wants you to love them.


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