By Gina Rice
There I was, at the tender age of 22, giving birth to a very sick baby—too young to be dealt such a hand, in my opinion. My husband and I had been married for two years and were beyond excited to welcome our new bundle of joy into the world. It had never crossed my mind that when our baby was just a few hours old, a doctor would be standing next to my bed, explaining the problems he would face.
My Christopher, weighing in at a whopping nine pounds eight ounces, and stretching 22 inches long, was not breathing. Sure, my pregnancy had been difficult from the get-go, but after giving birth, the clarity of how dangerous my ailments had been for both of us became quite clear. But what a miraculous story we have lived to tell. My son is 25 years old now—although it has certainly been a very long, hard road to get to this place.
A learning experience
As the birth rate of children with special needs increases at an alarming rate, I feel the need to help as many parents as I can by telling our story. The unbelievable hardships and situations that were put in front of my young self are part of that. Each day—and sometimes each hour—brought a new learning experience.
My Christopher was born with a multitude of hardships: Cerebral palsy, atrial and ventricular septal defects of the heart, a prolapsed mitral valve, pyloric stenosis, a hemangioma on his left arm, a double hernia and floppy baby syndrome. By the time he was two years old we had 17 doctors and had been thrown into a world of unknowns , yet I managed to educate myself enough to navigate us through. I’m not going to lie—each and every diagnosis was like a kick in the teeth. Within the first five years, Christopher had undergone eight surgeries, contracted pneumonia 11 times and had 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.
On a mission
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 we 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, 25 years later.
When you are faced with a walk like this, it is hard to embrace and understand. It takes time! You feel countless emotions and have to make a choice: To be a victim or a victor. For me, I chose to always turn a negative into 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.
You are not alone
Knowing I was not alone 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 path, ask questions and share your story with others. It helps tremendously! Along the way, you will find others with the same story as yours. There will be many people 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 (or something). Bottom-line: The sooner you embrace your child’s diagnosis, the sooner you can grow to understand the mission ahead. You are doing them the biggest favour ever.
Ask for help
Swallowing your pride and asking for help is key. My husband and I chose to look for help, then grew to understand that we had been handpicked for this job. Once you start looking at things differently, they start to fall in place. Let go of the guilt and self-pity. That might be easier said than done, but it can be done. I and my family are living proof! We have come so far by facing our daily challenges head on. Christopher is alive and happy.
So, if you are facing the challenge of a new diagnosis or a sick child, know that it can be overcome. After more than 42 surgeries and procedures, and fighting pain day in and day out, my wheelchair-bound son is as happy as a clam just to be alive.
You will probably look back on this time in your life and wonder how you ever made it through—and then you will smile, because you will know you walked through it. And if given the chance to walk through it again, you would.
Gina Rice, mother of Christopher, and author of Finding Christ Through Chaos.