You Would Make a Great Big Brother

Before having children, my husband and I would talk about how many little feet we would like to have running around the house. Many times we would agree on two children…healthy of course. However, every now and I then I would get the urge to want to have three even four.

I envisioned them all growing up together, playing sports, sharing friends and even overcoming the inevitable life challenge as a unit or team.

After a healthy, uneventful pregnancy, our Jack entered the world. He was perfect. There were some immediate red flags after his birth but nothing that sounded the alarms. His feet were flexed to his shines, his ankles were super flexible and he had a slight curve of his back.

After two short days in the NICU, we were able to take him home. It was the most magical time of my life. I never loved someone so much or looked at my husband the way I did those first couple of weeks. I wanted to feel this love and magic again and again and again. But this feeling soon turned into fear of the unknown even after we got an answer.

In November of 2017, a year and 6 months after Jack’s birth, we were told he had a rare form of Congenital Muscular Dystrophy. Further genetic testing showed that my husband and I both carry a mutation in the same gene causing the disorder and that we have a 25 percent chance of passing the same disorder to our future children. It was a devastating blow.

We didn’t plan for this. We didn’t talk about this. Now what?

I ask myself this question every day since getting Jack’s diagnosis.

Now what insurance do we need to make sure his medical equipment and physical therapy is covered? Now what is going to be the best house for Jack? Now what if he never walks? Now what extracurricular activities will he do?

Now what do we do about having another baby?

Like any special needs mom, the answers to these questions change on a daily basis but for the most part I can imagine the answers.

House? No problem, my father in law is a contractor we will figure it out.

Insurance? There are ways to supplement medical cost and if we utilize both of our insurances we can make it work.

Walk? Jack is a very resilient child; if he cannot walk he will be able to thrive in a wheelchair.

Extracurricular activities? You don’t need to walk, run or jump to play the piano or paint.

But the one answer I don’t have is to the sibling question. I cannot wrap my brain around it.

But I know one thing for sure…Jack would make an amazing big brother. He would be such a good role model to his little brother or sister. He would take them under his wing, protect them, care for them and love them with all that he has. He would be able to show and teach them things that no other big brother would be able to. How to not dwell on the negative, how to overcome obstacles with grace and humor, how to educate others about his condition and what they can do to help and just how to be a good person.

So, I guess I have the answer to my question.

Now, what do we do about having another baby?

We will do anything we need to do to make sure Jack is able to be the best big brother he can be. Anything we need to do to make sure he has a forever buddy in his life that understands him and loves him for who he truly is. Anything we need to do to make sure our love for each other and Jack is shared and multiplied.

Jack, you are going to make an amazing big brother someday. I just know it.

Written by, Jessica Schneider

I am a working special needs mom from NJ trying to hold it all together. My son Jack was diagnosed with a rare form of Congenital Muscular Dystrophy in November 2017. You can follow Jack’s journey on Instagram @jacktakesoncmd.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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