To The Mother Whose Life Isn’t Taking The Path She Expected

By Gina Rice

There I was, at the young age of 22, giving birth to a very sick baby. I was too young to be dealt such a hand, in my opinion. My husband and I had been married for two years and beyond excited to welcome our new bundle of joy into the world. As I listened to a doctor explain the problems my son would face when he was barely a few hours old, I realized how unprepared I really was.

My Christopher, weighing in at a whopping 9 pounds, 8 ounces, and stretching 22 inches long, was not breathing. Sure, my pregnancy was difficult from the get-go but after giving birth, the clarity of how dangerous my ailments were for both of us became quite clear. My son is 25 now, and I am here to tell you, this has been a very long, hard road.

As the birth rate of children with special needs is increasing at an alarming rate, from five percent to thirteen percent, I feel the need to help as many parents that I can with our story. The unbelievable hardships and situations that were put in front of my young self are part of our story. Every day was a learning experience, day by day, and sometimes, hour by hour.

My Christopher was born with a multitude of hardships: Cerebral Palsy, ASD VSD of the heart with a prolapsed mitral valve, a narrow pyloric stenosis, a hemianganona on his left arm, a double hernia and floppy baby syndrome. By the age of two, we had seventeen doctors and were living in a world of unknowns, a medical system that created opportunities for me learn, yet I managed to educate myself enough to navigate us through. Each and every diagnosis was like a kick in the teeth. I’m not going to lie. Within the first five years, my son, Christopher, underwent eight surgeries, contracted pneumonia eleven times, and too many grand mal seizures to count. But, as a mother, I knew all I could do was to keep pushing, keep learning, and keep this precious soul alive.

Normal life? Normal marriage? Not so much, but my husband and I did the very best we could. We were on a mission, growing stronger day by day, diagnosis by diagnosis. We were on the same mission, yet dealt with things differently. The anger, sadness and stress were all hard to work with, but we coped, and still do to this very day, twenty-five years later.

When you are faced with a walk like this, it is hard to embrace it and understand. It takes time! You feel countless emotions, each and every one of them, and at some point you have to choose: Will you be a victim or a victor? For me, I made a choice to always turn a negative to a positive, even though some days I cried my way through them. You know what? You will always face “those” days and that’s okay. That is the mission chosen for you. Sad tears flow, turning to tears of joy from the slightest progress that should be celebrated and embraced.

Knowing you are not alone in the walk was a biggie for me. There are a ton of support groups and resources to turn to. Seek out families that are walking the same walk, ask questions, and share your story with others. It helps tremendously! Along the path, you will find others with the same story to tell. There will be many ahead of you, many behind you, and some just trying to stay on the path, but just knowing that you are not alone helps.

Hiding or denying what you are facing may be easier for some, but that didn’t work for me. It actually made me feel worse, like I was a horrible parent. Bottom-line, the sooner you embrace your child’s diagnosis, the sooner you grow to understand the mission ahead. You are doing them the biggest favor ever.

Swallowing your pride and asking for help is key. My husband and I chose to look for help then grew to understand that we were hand-picked for this job. Once you start looking at things differently, things start to fall in place. Let go of the guilt! Let go of the self-pity! It may be easier said than done, but IT CAN BE DONE. I am living proof! We are living proof! Our family has come so far by facing daily challenges head on. Christopher is alive and (most importantly) happy.

So if you are facing a challenge with a new diagnosis or a sick child, know that it can be overcome. With more than forty-two surgeries and procedures, fighting pain day in and day out, my wheelchair-bound son is happier than a clam just to be alive. You may look back on this time in your life and wonder how you ever made it through, then look back over your shoulder with a smile because you will know you walked through it. If given the chance to walk through it again, you would.