I have been reading quite a few Down Syndrome blogs lately….Tomorrow is World Down Syndrome Day. It is celebrated on 3.21 each year. The date is significant as it represents 3 copies of the 21st chromosome: the genetic condition known as “trisomy 21,” or “Down syndrome.”
Over the past couple of weeks, I have read many Down Syndrome birth stories. There were stories where moms knew because of prenatal testing, moms that were in shock, there were inspiring stories and heart breaking stories. The truth is none of us know how we are going to react when faced with the reality that your child has been born with Down Syndrome. For me – Boston’s “birth day” did not bring the diagnosis. Boston came early – 10 weeks early. He weighed only 2.3 lbs and was fighting for his life – Down Syndrome was not even in our minds. I remember when he was born and struggling – I thought for sure he had Rett Syndrome too (like Brooklyn) – words that I did not speak from my lips (nor did anyone speak them to me) it was if I said those words it would become true.
It was not until he was seven weeks old that we were given the Down Syndrome diagnosis.
I remember that day like it was yesterday. Dad had come down to the hospital to take me out to lunch. (Seven weeks in the NICU was starting to wear on me and dad knew if he came down, he could talk me into “taking a break”) We returned to Boston’s NICU room and our nurse, the head NICU nurse, and the doc that was rounding that day were waiting on us. I was excited to see them – that usually means that we were going to get an update on how my little guy was doing. The words came out of our nurse’s mouth “Boston’s test came back positive for Trisomy 21….Boston has Down Syndrome.” At that moment I could not breath, let alone speak. I now am embarrassed to say that I ran out of the room – I left – I walked down that hall and out of the NICU. (not one of my finest moments as a mother.) But, that was my gut reaction (please refer to the start of this post where I said NONE of us know how we will react when faced with this reality.)
I think it was a mixture of emotions for me. It was a THANK GOODNESS it is not Rett Syndrome. To a no no no no no this can’t be happening – another diagnosis. WHY? Why me? Why my kids? (again – not my finest moment.) But I was mad. I was sad. In that moment I could not focus on the love, inspiration, and endless source of healing giggles that this little boy would bring to me. In that moment…..life was just….NOT FAIR.
I remember walking back to Boston’s NICU room. (after regaining the ability to breathe again and allowing the tears to escape for awhile – I did not want to return to my son with tears dropping from my face. I did not want him to feel my pain, feel my sadness, feel my broken heart.)
I can still picture walking back into his room and my dad sitting in the recliner holding Boston close to him. (He was trying to be strong for me – I know that now. But I saw his tears that day too.) I think that with my parents it is double the hurt. They ache for their grandchildren and what might have been along with watching me, THEIR CHILD struggle with this life altering news. As I walked in that room, seeing my dad holding him, rocking him, loving him – it was a beautiful reminder that NOTHING had changed in the way we love this little angel. We had indeed been “re-routed” a little with our plans – there would for sure be changes to come in life, but the amount of love surrounding this child….well, no diagnosis would change that.
Actually, if it is possible – I fell in love a little bit more with Boston that afternoon!
This year, in honor of World Down Syndrome Day, I want to thank all of you that have been a part of this journey with me….who honor the awesomeness of my son today and EVERYday!