I never thought I would have a second child, much less one that is a medically fragile child and requires lots of medical intervention and follow up.

But yet, here we are.

Our little John was a huge surprise, made an even bigger surprise when he was born with unexpected genetic abnormalities, and continues to surprise us all the time. He has the genetic syndrome Noonan Syndrome, this was a spontaneous mutation during development. Meaning, this is not something that is in my, or his father’s family histories. His first year of life was a rather bumpy road. We went through numerous hospitalizations, including having a G-Tube placed, and open heart surgery to repair his pulmonary valve. There were so many specialist follow up, that I lost count how many times we made the two hour trip to Children’s Medical Center Dallas.

John is in the most medically stable condition he has ever been in, and even though he physically functions as a 9 month old (he is 17 months), he strides everyday to do everything he sees his big brother do. This time last year I often sat in hospital rooms wondering when this would be over. Why was this happening to us? His conditions did get better in time with the right course of treatments and therapies. It took time, but we got there. Here he is finally crawling, and cruising furniture. He can say a handful of words, speech does not seem to be effected so far, and he can certainly throw a tantrum like a 17 month old.

Life has slowed down, but yet still so busy. He has several types of therapies that total  six visits each week. Thank goodness they all come to our home! Our trips to his specialist’s in Dallas have slowed down to every five to six months from every other month. Still, that doesn’t stop the constant thoughts of what the next day might bring. Will the bottom of our world fall out tomorrow and we spend three weeks in the hospital? Could his heart stop during the night while I’m finally sleeping? Will I have to plan his funeral before he is out of diapers? This fear has had me hook him up to his Pulse-Ox machine when not really needed. Just in case…the alarm would wake me up and maybe I could call 911 quick enough.

These fears have settled for the most part, and have now shifted to another set of worries. Bullying. I know that bullying is a word that has been in the media a lot in the last few years, and there are those who think everything gets blamed on bullying. That is a whole other topic on it’s own…but John IS different. Sadly, there are still people in this world who will put him down and pick on him. Just because they can, and there will still be parents who snicker and encourage such behavior behind closed doors. Where do these kids learn the behavior in the  first place? I can’t and won’t be able to control the whole world when he is old enough to walk out into it. We can try all we can to make it a little better, but the world will never be perfect.

John is a lot of work and is a medically fragile child. However, I could not imagine not seeing my oldest not have a little brother. Just watching them be brothers, and the silly things they do to entertain each other like laughing when the other one farts.  Our lives changed so much in 2016, but I could not imagine life without John in our family!

What It's Like To Have A Medically Fragile Child