Noah was born on a Friday and we were supposed to get the results of the karyotype back by Tuesday. That was the longest weekend of my life. The unknown is a scary place to be. You want to hope for the best, but your mind gravitates toward the worst. I just didn’t know what to feel, what to think, what to prepare for. Patience is definitely not my strong suit, and the waiting was killing me.
The call came late Wednesday afternoon while Cameron and I were at home getting ready to eat dinner. My mom was on a walk and Cameron was in the backyard playing with Landon. I was in the kitchen preparing the food when my phone rang. I just knew it was the hospital. I froze, simultaneously wanting to answer it immediately so I could know as soon as possible…and then not wanting to answer because somewhere deep down I knew that these were the last moments I would be blissfully ignorant of the fact that my son has Down syndrome.
I couldn’t stop the tears. It was true. The thing that we feared was a reality.
I ran outside to Cameron and began to sob on his shoulder. Landon was playing in the grass, oblivious to the life-altering news we had just received. My mind raced with conflicting thoughts. Fear, despair, worry, love, protectiveness, guilt.
I wish that we were with Noah when we got the news. I just wanted to hold him in my arms, feel his presence. The diagnosis of Down syndrome scared me, but my sweet baby didn’t. If I could just look into his eyes, I knew that he would help me make sense of it all. After getting the news, we drove to the hospital in near silence. I couldn't contain the sobs that wracked my body. Cameron held it together, as he is so good at doing, but I knew this news was as hard for him to digest as it was for me. All of my grief came pouring out of me, while he concealed his in internal thought. We have both learned a whole lot about ourselves and each other through this journey, especially how we process things. Once we got to the NICU, I couldn't wait to hold Noah. I needed to show him, and myself, that despite how sad his diagnosis made me at the time I still loved him so much.
I snuggled with my sweet boy all morning, trying to absorb the news. I couldn't stop crying. Even though I'd read as much as I could about Down syndrome during the past few days, it could not prepare me for this. I had been forced into unknown territory. It felt big, scary and lonely. My mind was constantly flooded with questions. Immediately following Noah's diagnosis, and often still, my mind filled with hundreds of questions. Why Noah? Why us? Is this really part of God's plan? If so, why would God want to add so much difficulty to Noah's life? Why will he have to struggle so much more than a typical child? What does this mean for the future? Will Noah have friends? Will kids make fun of him? Will he finish high school? Will he ever have a job? Will he live with us forever? Will we outlive him?
Deep breath...one day at a time. That's the only way I could think in order to keep from driving myself crazy with the what ifs. I don't know what the future holds for Noah any more than I know what it holds for Landon. All I know is that it will be a different path than we expected. I had to stay grounded and focus on the fact that Noah was still in the NICU for an undetermined amount of time.
As if we didn't have enough to process that day, in came the specialists. During the next couple days we were confronted by one person after another either wanting to make sure we were okay (social worker, chaplain, March of Dimes volunteers) or doing tests on Noah (geneticist, cardiologist, audiologist, endocrinologist) or evaluating him (nutritionist, physical therapist, lactation consultant). It was a whirlwind. I think I barely processed anything that was said to me. Knowing what I know now, I would love to give some tips to these professionals on how to respond to a special needs diagnosis. I can tell you from experience what was helpful and what was most definitely not. My favorite person, aside from family, at this time was a nurse named Dino. She was the head pediatric nurse and she was amazing. She always seemed to walk in when I was in the middle of a cry-fest. Although, let's be honest, that was pretty much all the time for me for several months. Anyway, she would come in and just hold me and talk to me about her brother who has Down syndrome. I needed to hear from someone who actually knew what it was like to grow up with someone with Down syndrome, as opposed to people telling me what I should expect based on what they'd read in textbooks or from seeing other patients. I needed those stories, that personal experience. It was so encouraging and gave me hope, something I desperately needed.
The other person who was such a comfort to me was my mom. She told me something the day we got the diagnosis that helped me tremendously. She said, "Let yourself grieve for the child you were expecting." I hadn't thought about it like that, but it was so true. Every mother hopes and prays for a healthy child. You never expect to have a child that ends up in the NICU or has a disability or a special need. I wouldn't have initially named the feeling grief, but that's what a lot of my sadness was. Even now, almost a year later, I'm still grieving...just in different ways. I get a wave of sadness every time I see a typical child Noah's age doing something that he won't do for months or even years. I'm sad for him, that things are so much more difficult for him. One of the hardest things for me to let go of is feeling guilty for that grief and sadness. I still struggle with that.
It's hard for me to end this part of the story because it's still evolving. Each day I am learning to accept and understand Noah's diagnosis more fully. I'd like to end this on a happy note and tie it neatly with a bow, but that's not the reality of it. I wanted to tell this part of the story as we were feeling it, not with the perspective we have now. There has been much joy and celebration throughout the past year and I will share that part of the story as I continue writing. I will say that despite our sadness and shock upon receiving the news that Noah has Down syndrome, we never doubted our unconditional love for him.