Every so often, for whatever reason, I think about the beginning. Not the very beginning, but the second beginning. The transfer, the NICU. The time after we knew about the Down syndrome and heart defect. It makes my head hurt, but I think about it anyway...
Dylan was discharged from the NICU after a 5 day stay. Really, he still shouldn't have even been born yet. His due date was weeks away, but there he was, in his car seat, dressed in his going home outfit. I held on to the handle of the car seat carrier and walked with him out of the NICU. Dave was ahead of us, our thoughts filled with Down syndrome and heart surgery, low muscle tone and Early Intervention, failed hearing tests and our daughter who waited back home.
We filed into the elevator and I looked down at Dylan. His head was completely flopped over. I sighed and tried to straighten it, but it flopped again. There was a nurse in the elevator. Actually I think there were many people in there, but it was the nurse who looked at Dylan and said, "Oh! He is SO cute!! Congratulations!". More "ooohs" and "awwws" chorused. Tears stung my eyes and I'm sure my face probably reddened. I was so... Sad. Confused. Ashamed. Hurt. Congratulations!? Really?!! I forced a smile and looked at the floor. Dave didn't say anything. We were being rude and I didn't care. I thought the nurse was lying and figured that they were all just trying to be nice. Congratulations for having a baby with Down syndrome? With a heart defect? I wanted to tell them all to just be quiet. Just let us be.
Later, when we got home, I walked over the the countdown ticker that had been sitting on our table since I had found out I was pregnant with Dylan. It read, "Your baby is due in: 14 days...". I cried.
I kept the ticker there on the table. I let it tick all the way down to Dylan's due date. I remember looking at it often, as it counted down, and wishing that somehow it was true - that it didn't already happen and that Dylan - the Dylan who I had been planning for throughout my pregnancy, was still in my belly and would be born soon and everything would be...normal.
Finally, the countdown got to 0 days and still the ticker sat on the table. It gathered a little bit of dust as it stayed on 0 days for weeks until finally, one day, my mom casually picked it up and put it away.
~
I think I will always remember that...but in so many ways I wish that I could forget it. Or maybe it's more that I wish it never happened that way. It makes me feel shallow and horrible and uncaring. I wish so many things had happened differently. How I wish that back then, I could have been the person that I am now.
Looking back at the second beginning, after "we knew", I feel very much as if I was unable to see Dylan anymore beneath all of the layers that had begun to cover him up. Little by little, in those beginning days, layers of Down syndrome, heart defects, low tone, Early Intervention, failed hearing tests...they covered up that little baby who had just been born. I lost sight of that little boy in there and because of those many layers, I began to close myself off to the possibility of love. Fear took over. Fear of what I did not know, fear of what I thought I knew...
I regret that, oh how I regret that.
But I did peel them back. Eventually, layer by layer, I began to peel them back and underneath was that same sweet little boy, the one who was exactly who he is suppose to be, waiting for us...
~
I am thankful for the nurse who congratulated us that day in the elevator, because we should have been congratulated. A new life, a life that is worth living, a beautiful life, is truly a blessing...and of course is something to celebrate.
7 comments:
Oh Laurie... those comments ring so true for me. Even though we knew about Bobby's heart defect at 20 weeks and probable Down Syndrome, I still went through all of the emotions you described. I grieved before he was born, I grieved in those early months afterward. I have occasional bouts where I still grieve. But something changed inside me after Bobby's second heart surgery when he was 10 months old. He was in the PICU for a month because he was having post-heart surgery issues with his oxygen sats (which were dipping into the 50s), and came home to us on oxygen and an NJ tube. I was so focussed on feeling sorry for myself and for him. And then he got better. And after a couple of other surgeries (gtube, nissen, tonsils and adenoids), he got even better. And he started to take off in terms of his development and his personality. I still look back and wonder how I ever could have grieved having such a wonderful, strong, truly amazing little spirit for a son. I am humbled in the face of his perseverance!
Valerie
Reflection is a wonderful thing. It's great to go back to where we were......and even better to see how far we've come!! It is because our little ones are such good teachers:)
Don't know what else to say except I know what you mean.
Laurie, I read your blog often. I could have been the one to write your post today. My son Elijah is fourteen. I still feel sad when I think of how I reacted when Elijah was born. I wish I would have known walking out of the hospital that day that everything was going to be okay and that the perfect life I thought I was losing had really just begun. I wish you all the best!
Pam
www.elijah.net (no blog yet, just an old website)
Laurie,
I love reading your blog. Your honesty and truthfulness are moving. You are a great person and a great mom!
What a beautiful, beautiful post, Laurie. I'm so moved by your words.
Laurie, Katie McFarland gave me your blog and I am so happy she did, reading the this post is so me as of right now. My Daughter Aubrey was born in October, and we had no idea durning the whole pregnancy that she had down syndrome, in fact she came a month early and was in the NICU all the nurses were avoiding me and i couldnt understand why, well day 3 when the pediatrician finally came in before we could be discharged he told us he thought she had down syndrome, mild though and her heart was fine they heard nothing which was great... 2 days later for her checkup out of the hospital, we heard the words, she has a murmur and you need to go to Boston right now.. I am only 23 years old.. she is my second child, my husband and i were in shock, distraught, griefing over a child because it wasnt the child we imagined... She has not had her heart surgery yet, so yes im sure you can imagin all those emotions are still here... I Feel alone, I feel like all my friends, and co workers, and other family memebers have no idea what it feels like... why didn't have a clue, am i an awful person for not knowing... the elevator scence you described seemed like you were telling my story. It kills me everyday i grifed and was upset, because when i look at her she is beautiful and so innocent- i read the books and read everything i can online everynight.. and i want so bad to see progress but i feel i might be looking to hard!! but thank you for these posts because they give me hope!!
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