Our little man, Isaac, came into the world at 33 weeks gestation weighing in at only 2 pounds 8 ounces. He was the cutest peanut ever!

So many uncertainties went through our minds right before the c-section as the doctors prepared us for the worst case scenerio. They had seen many unusual markers on an ultrasound…….they were certain that be born with a disorder incompatable with life. We were still very hopeful after he was born that the doctors were wrong about him having a disorder, but when he was a week old the tests came back saying that he had a deletion on a portion of chromosome 10 and a duplication of chromosome 14. There was very little information about it so we didn’t know any important things such as how long he would live or if he would able to walk someday. Isaac spent a total of 7 months in the hospital his first year of life. It was a wild rollercoaster as he had one respiratory infection after another. When he was 3 months old, he had several airway abnormalities that required him needing a trach. It was quite an adjustment learning how to take care of the trach and all that came with it, including nurses coming into the home.

Since our situation was so unique, it was hard in the beginning to find anyone going through a similar journey. I began finding support networks online such as a trach board and a message board for parents with children who had rare chromosome disorders. Other things that helped me were poems and books about children with special needs. It inspired me that these parents found so much joy with their children that they wanted to write a poem about them. Of course I kept a copy of the “Welcome to Holland” poem taped to my wall for several months. I couldn’t of said it better as we landed in this unknown territory. Later on I found a few Moms in our area who were in similar situations. We occassionaly meet for coffee and talk about things that most people don’t relate to, such as Doctors, surgeries and home nursing. I also discovered that I’m not superwoman or stronger than anyone else in this world. Many people have told me that I must be so strong or a special kind of person. I’m an ordinary person who has to take care of myself in order to take care of others. I had to learn that the hard way and to remember to take a time out when life gets to be too much.

We have heard it all from doctors over the years such has he wouldn’t recognize us or know who we are. He is a very interactive boy with a smile that lights up a room when he sees his “people.”

I would also say that Nobody can put an expiration date on your child either. We had heard so many speculations on how long he would live. We came to the conclusion that everyday that he’s here is a gift. Now at 4 years he’s doing better than ever!

Isaac’s mommy, Colleen, blogs about his journey at One Day At A Time.