Let me preface with this: Gabriel is alive. I feel him moving everyday. He has trisomy 21, but he is alive. That, in itself, is enough reason to give thanks and praise.
The grieving cycle looks different for different people. I’m lucky and thankful to know about Gabriel’s complications and abnormalities beforehand. This has allowed me to start working through my emotions and not be hit in the face immediately after his birth with something I’ve never imagined. Don’t get me wrong, I know that I’ll revisit some of these emotions throughout Gabriel’s life, but I’m beating the brunt of them right now so that he doesn’t have to suffer because of my un-dealt with emotions.
Being angry is easy to explain. Of course I’m pissed that my baby has been diagnosed with a chromosomal abnormality, duodenal atresia, and has a hole in his heart. I’m angry that he will hurt physically throughout his life for various things. I’m irate that at some point he will be made fun of by other kids…or adults…ignorance, in this case, is not bliss. Isn’t this enough?? Hasn’t he been through enough already?? Does he really have to have a heart defect too?? Do you know how rare it is for a woman my age to have a child with Down syndrome? Duodenal atresia is rare. He has a hole in his heart, is that not rare? Him and I have been SOL when it comes to beating the odds. It’s not fair. And I’m pissed.
Tears? Not so easy to explain. I had tears of sadness for the first hour after receiving the news of Gabriel’s Down syndrome, but that was it. Why then could I not stop crying? I wasn’t crying because I was sad or pitied myself or situation…yet I couldn’t figure out from what emotion the tears were coming.
Shortly after hearing the diagnosis, my mom bought a book for me called, “A Different Kind of Perfect: Writings by Parents on Raising a Child with Special Needs”…the, “writings by parents on raising a child with special needs,” part of the title was an idea that hadn’t quite hit me yet. I would be having (and raising) a little boy with special needs. The book contains real and raw emotions from parents. It is divided up into different emotions: grief and anger and denial and depression are the beginning few. The “grief” section helped me to pin down what I was feeling and why.
When I first found out I was pregnant, I went through all the emotions of an unplanned pregnancy. I was told by doctors that it would be nearly impossible for me to conceive in the first place. So when I saw a plus sign, I was shocked, to say the least. Getting past the shock and other emotions, I started to dream. I dreamt of my baby’s brilliance and intellect and good looks and charm. I had expectations that he would be athletic, musically inclined, a world traveler, self-thinker, that he would question and challenge respectfully, and that he would lead an inspiring life. “Unfortunately, your baby is testing positive for Down syndrome.” That shattered my dreams and expectations for my son. I was grieving the loss of the things I wanted so much for him and that he wouldn’t be able to have or achieve now. Selfishly, I was also grieving that the dreams I had for myself were gone…and not returning. I had connections and experience in my college life that would have definitely led to successful political jobs. And now, that was gone. I would be home caring for my son. I had never imagined myself to be the stay-at-home type, but I was staring down the barrel of no options.
It took me a few days to wrangle those thoughts.
Finally, I got it. He is a different kind of perfect. That’s it.
Gabriel will still be all the things I wanted and expected of him; they will just look differently. He will lead a phenomenally inspiring life. He will teach me and my family things that we’ve never dreamed. And lucky for me, I won’t have to deal with some of the terrifying things that you parents will…or have already gone through. Yay!! Depending on his capabilities (I don’t like hearing myself say “disabilities” because I feel like I’m short changing him…but you can), I’ll never have to worry about drugs or alcohol, serious and complicated rebellions, calculatingly leaving home, severe and spiteful manipulation, and I’m hoping to luck out on not having to worry about girls! I’m not naïve to think that he won’t have emotions and feelings like any other boy, but I really believe that the severities and complications associated with “normal” adolescents and adulthood won’t maul him…or I.
Since realizing the gift and possibilities of his life (and my own), I’m just as excited to be his mom, if not a little more excited.