In the past I have used this space to share my personal pregnancy and birth experiences with the mission to educate, support and spread awareness. What follows is not about pregnancy or birth.
Exhale... and honestly, a story I never wanted to write.
The story of Silas. Our sweet, sweet Silas.
It's been a little over a year since we received his diagnosis. As I write these words, the breath leaves my body, and I’m transported to the day I received that call from the geneticist at Lurie’s to schedule an appointment to discuss the findings of the WES test.
This was the final test in the unbelievably laborious process of trying to find an answer to Silas’ ongoing developmental struggles. It’s also another one of those things I never really considered I would have to learn about.
The call. Heart drops. Breath leaves. And my husband and I wait several days for that appointment. I think I held my breath the whole time. As I reflect on it now, it becomes this strange “in-between” place, between the life we had been living and the life we would come to know. Things would never be the same. Sounds dramatic, right? It was surreal. Someone just shook up the snow globe that was my life and I was waiting to see where all the pieces would land.
Truth is, I knew. I had hoped for a long time that I was wrong.
I just knew.
The moment my husband and I learned of the findings is burned into my memory. The geneticist described, almost to the letter, every single characteristic Silas has, all listed and wrapped up into one ultra rare genetic disorder, Okur-Chung Neuro-Developmental Syndrome (OCNDS). So rare that there were less than 250 known cases worldwide.
My heart sank. I sobbed. I was in shock. All the testing. All the doctors. Now we know. There was actually some relief in knowing the search for answers was over. Just as quickly, the relief was replaced by a complete loss of hope. All hope escaped.
Living in the what ifs and maybes. Maybe he will catch up. What if he is just delayed. With this condition, we now knew that he was not just delayed and that he would not catch up. Everything changed.
I was consumed by grief. I’m not entirely sure why, maybe because Silas is my sixth child, but the thoughts of what he would be missing out on in this life were all consuming. Knowing his childhood and life would look so much different was beyond overwhelming.
It has taken me well over a year to be able to write about it. Settling into this new truth has been one of the greatest challenges of life. So many big questions.
Exhale… I’ve learned a lot. First, no one chooses this.
Being the mom of a special needs, medically complex child is not a job anyone signs up for. I have a friend whose son has Fragile X. I have watched her for quite some time. I always had such admiration for her strength. I remember thinking about how hard it must be and that she handles it all with such grace. I told myself that not just anyone could do what she does (certainly not me). She is a gentle lion, and only recently have I come to understand that she grew into that. Not by choice, but by necessity.
I’ve learned that being a special needs mom is more isolating than I could have ever imagined. The village of friends and family I thought I had built over the years seemed to slip away. The silence was deafening. The ones I thought would be there alongside me as I figured out how to pave this new path, were no longer there.
Exhale… It’s painful but I’m beginning to learn that this has made space for others.
So much of my life has been a journey of faith. I continue to learn new things about faith, especially faith in others. There is something amazing about special needs parents. They show unspeakable kindness, love and compassion. They are always willing to help and walk alongside you. And the true angels of this world have revealed themselves to me. I had no idea they would take the form of Special Education teachers and Teaching Assistants. Or present themselves as fiercely dedicated, caring and loving Early Intervention Physical, Speech, and Occupational Therapists.
Exhale… I continue to learn about perspective.
As a mother of 6, I thought I was prepared for whatever parenting had in store for me. Gut check. I never thought I would watch as my child struggled with basic functions, like eating, drinking, crawling, walking. I took for granted all those milestones until I had a child who could not reach them.
I watch him cry during his weekly physical therapy because it's so hard for his little body to do the work. My heart breaks seeing how much he wants to communicate. He has so much to say but his brain just can't figure out the pathway. I watch the pride he has when he learns a sound to just have it slip away the next day. His struggle with eating and drinking. I didn't even know these struggles existed.
Perspective rules my life today, there are so many trivial worries I had before Silas. The C in Spanish doesn’t some anywhere close to the sleepless nights of worry about my son basic ability to eat and drink. Or the seizures he has. Or his struggle to communicate.
It’s been a little over a year and I feel more settled most days.
Exhale… sometimes I breathe a little easier, sometimes I do not.
Day by day, I feel more confident in my ability to be a voice and advocate for my son. And I feel more settled in knowing that there is no going back to the life I knew before. And that we can continue to move forward.
Some days are harder than others, I do cry a lot still. I also feel overwhelmed most days. There is a lot of work to be done and there isn't a clear path set out for us. We must build the path ourselves. There is no set of instructions on how to support him.
I still want to take away my child’s struggles, I don’t think that will ever change. One thing I often return to is Silas’ contagious joy. He is a happy and joyful soul. Pure and simple. My oldest son commented the other day that he wished he had that joy. Simple and pure.
Silas is the blessing I didn’t know we needed.
One last thing I am wondering about, I said before that this blog is not about birth.
There is a quote I adore that sums up what I love about my job.
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother. never. A mother is something absolutely new. - Osho Rajneesh
This is my birth as a special needs mom.