I was 22 when I gave birth to a very sick baby. Very young, in my opinion, to be dealt a hand as such. My husband and I had been married for two years and were so excited to welcome our new bundle of joy. Never in a million years did I think a doctor would be standing next to my bed explaining the problems my bundle of joy was facing after making his appearance just a few short hours earlier.
My Christopher was born not breathing. I had a hard pregnancy from the get go, and after giving birth it became quite clear that I had very dangerous ailments and it was a miracle that both of us lived to tell our story. My son is 25 now, and I am here to tell you it has been a very long hard road. As children with complex medical conditions are being born daily and increasing, I feel the need to help as many parents that I can.
My son was born with Cerebral Palsy, heart defects with a prolapsed mitral valve, a narrow pyloric stenosis, a hemangioma on his left arm, a double hernia, and was extremely floppy. By the age of two he had 17 doctors. We were literally thrown into the system and I managed to educate myself enough to navigate us through.
Hearing each and every diagnosis was like a kick in the teeth. I’m not going to lie — it was a very hard first five years, which included eight surgeries, pneumonia 11 times, and several grand mal seizures. But, I knew that all I could do as a mother was to keep pushing, keep learning, and to keep this precious soul alive. I can’t even believe some of the situations put in front of my young self. Every day was a learning experience; we lived day-by-day and sometimes hour-by-hour.
We did not have a normal life or marriage, but my husband and I did the very best we could. It made us stronger, like we were on some sort of mission. We both dealt with things differently. The anger, sadness and stress were all hard to work through and we still need to work on them to this day. When you are faced with a walk like this it is hard to embrace.
It is really easy to hide and deny. That didn’t work for me; it actually made me feel worse, like I was a horrible parent. The fact is that the sooner you embrace your child’s diagnosis, the better, as you are doing him or her the biggest favor ever.
It takes time…you must feel every emotion, and at that point you can chose to be a victim or a victor. I made it a point to always turn a negative to a positive, even though some days I cried my way through them. You will always have those days, and you know what? That’s OK. Sad days will start to turn into tears of joy. The slightest progress was so celebrated.
Knowing you are not alone doing this walk was a biggie for me. There are a ton of support groups and resources that you can turn to. Meet other families who are walking the same walk, reach out, and talk to people. It helps tremendously. You will meet people who are ahead of you on this path, and some people trying to stay on this path, but just knowing that you are not alone will help you. Swallowing your pride and asking for help is key.
I chose to look at things differently with the support of my husband and another couple who were handpicked for this job. Once you start looking at things differently, things start falling in place. You must let go of the guilt and the pity. So much easier said than done, but IT CAN BE DONE. I am living proof!!
I am so proud of how far my family as a whole has come. We have faced daily challenges head on and I am very proud of us. My son is alive and happy. So, if you are facing a challenge with a new diagnosis or a sick child, know that it can be overcome. My son has had 42 surgeries or procedures, is in a wheelchair and fights pain daily, but is happier than a clam just to be alive.
You will look back on this time in your life and wonder how you ever made it through, and you will smile because you will know you walked through it. And if given the chance, you would walk through it again.