Luck of the Irish

I never knew my son had Down syndrome until the day he was born. It’s funny because I had plenty of time to think about what could go wrong with my pregnancy but that was the one thing I never considered. You see my water broke at 24 weeks and I spent 9 weeks in the hospital on strict bed rest. I had plenty of time to think and worry. I read 25 books, I learned to knit, I watched countless movies, but most of all I spent hours upon hours sitting in bed worrying about the possibilities of what might go wrong with my son if he was born so premature. I just kept praying that if I could go another day the better the chances everything would be OK. I never suspected there could be any other issues besides those associated with premature birth. I saw multiple doctors daily, had bi-weekly sonograms and nothing was ever diagnosed. When my son Jack was born on St. Patrick’s Day I was ecstatic. I made it 34 weeks! I figured it might be a few weeks before he could go home but everything would work out.

 

It was shortly after Jack’s birth my OB came to see me and my husband. He told us the Doctors suspected he had Down syndrome and that this might be the reason my water broke. We were devastated and began to cry. We spent most of the next 48 hours in tears trying to deal with our own emotions as well as the emotions of both our families. How could we deal with this? How would having Jack impact everyone’s lives? Why did everyone keep saying god only gives what people can handle? What did this mean for my oldest daughter’s future? On March 19 the blood test came back and confirmed Jack had Down syndrome. That’s when something within me snapped and it became all about Jack. I realized there was no changing the diagnosis. I stopped feeling sorry for myself I became his mother. I wanted to just hold him and take care of him. There was no more crying. He was my son, I loved him dearly and no extra chromosome was going to change that. It was no longer about me but rather what HE needed. I immediately asked to meet with the Social worker and asked for whatever resources were available. That’s when the luck of the Irish kicked in. Jack was born in Livingston, New Jersey were a program for children with Down syndrome resides. The social worker immediately told us about Stepping Stones and the work it does. She arranged for us to meet with someone from the school as soon as possible.

 

Exactly one week after Jack was born we met with Judy, the Director of Early Intervention at Stepping Stones, not knowing much about Down syndrome other then the little information we could find online. We did not know what to expect or what we were going to do but we were desperate for information. She brought us information and books. She told us we weren’t alone and made us feel like we had people we could count on. Most of all she made sure we knew that although Jack was too small to start therapy right away we should still bring him to the school as soon as possible to meet the various therapists and learn what we could do to immediately start helping him.

 

Even though he was out of the hospital a few days, only 4lbs, and on a heart monitor we brought him to Stepping Stones. We met with the staff and saw what kids with Down syndrome could be with the proper therapy. At our very first meeting we met with a Speech therapist who taught me and my husband techniques that would help our son down the road with his progress. I left there feeling so great! I had a plan! But most of all I walked out knowing I had met great people who understood what I was feeling and knew what was best for Jack. We took those lessons and worked with him everyday as he grew.

 

I have many, many great friends and family who tried their best to help, to understand, and to sympathize, but they simply did not understand what it is like to have a child with Down syndrome. When Jack was three months old he started Stepping Stones as an EI “student’. It was there I learned we were not alone. Through Stepping Stones I was able to meet parents whose children had problems just like Jack. I got referrals to the best doctors. I met with experienced therapists who would work with my home therapists and shares ideas on how to help Jack progress most quickly. I got tips on how to handle family and friends who may say inappropriate things and how to deal with it. But most of all I found people who I could talk to about my feelings, people who knew exactly what I was going through. I have made many quick friends who will be my friends for life.

 

My son is now an active, playful, almost typical 4 and ½ year old. He is delayed but doing phenomenal! He attends Stepping Stones on a full time basis and is exceeding all of our wildest dreams. I am not sure where he would be without Stepping Stones but I know he is better off for having gone there. For all this I will be forever grateful to Stepping Stones and their wonderful staff!