Here’s to 10!
I was on a conference call 10 years ago and as someone asked me a question I suddenly felt my water break. Instead of answering the question I said - "I have to go. I will explain later" and hung up. I was working from home at the time thanks to the temporary bed rest my doctor had put me on due to pre-term labor which clearly had not been stopped. Terrified and shocked this was happening at 28 weeks pregnant I remember so clearly standing in our apartment hallway telling myself to take a deep breath- think about what I needed - put it in a bag - and call my husband! I realized at some point in my frantic state that I actually had a car waiting for me downstairs to take me to a meeting I had been planning to go to but instead got in the car and directed them to the hospital.
The rest was honestly a blur until about 14 hours later when at 4am the doctors told us we were having a baby in a few hours. For some reason my husband and I both thought I would just be ending up on hospital bed rest for a few weeks while our son grew inside me longer. But my body and our son had other plans that day and just as they predicted he arrived a few hours later at 8:30 am a tiny but mighty 2 pounds and 10 ounces screaming baby who was greeted by 20 hospital staff members who joined us in the delivery room ready to whisk him away to the NICU. And just like that in an instant a new little human joined our world and what a miracle it was.
It was a crazier beginning than we perhaps expected and we certainly had not anticipated spending the first 58 days in the NICU and yet during that time he grew and we grew into our new roles as parents to a child with rare diseases. I remember in those early days feeling unsure of what our future would look like but I knew we would do anything and everything to both advocate for what he needed and also try to ensure that his diseases would not define him or our lives entirely. I have thought often what I would tell myself in those first weeks and months now that I had not known then, and I think the main thing is that our son will be our guide. Even as I think back to the NICU he really was from the start doing things his way, in his own time and it was our job to both listen and take cues from him but also keep pushing him forward.
I still think about what my Mom often reminded me of and have read her words back often this past decade, “The "firsts" will always be hard. They were for all of us and will be for him. But like everything else, he will conquer them. Master them. He will be the victor!” And the victor he has certainly been. It is truly amazing to think how far he has come and what a strong, resilient, kind, silly and thoughtful little person he has grown into.
It is hard to sum up how amazing the last 10 years have been but I am bursting with emotions as I think about all the moments the big and the little and the fun and the challenging, all the laughter and tears, the signing and playing, each day a new adventure some easy and some hard but all filled with endless love and shared joy. Turning 10 feels like a big moment - bigger than other years-perhaps knowing that he is now beyond being a little kid and just on the brink of becoming a big kid, knowing big changes will come soon.
Unlike in those early weeks after he was born, I no longer worry about his future or if his life will look different because of his diseases. While I can’t pretend to know what challenges await, just that they will exist, I take comfort in knowing we will face them together- just as we have always done since he arrived on this day 10 years ago. But I also know with confidence that he will overcome them, and that his future is bright and full of endless possibilities.
So as our son’s birthday weekend comes to a close I am endlessly grateful for the joy and delight that were so palpable in him these past few days, for the love and support of family and friends in all moments of life, for the gift I have been given to be his Mother, and most of all for the magic and light he brings to our world.
“He had the gift of stopping time & listening well so that it was easy to hear who we could become. & that was the future he held safe for each of us in his great heart. You may ask, what now? & I hope you understand when we speak softly among ourselves & do not answer just yet. For our future is no longer the same without him.” ~ Brian Andreas
