In 2003, the doctors told us, "She may have a short life and if the seizures cannot be controlled, she may not live past age 5." Our Jenelle will be 5 years old in less than a month. And unless you are brand new to this website, then you know that Jenelle has been thriving, developing and learning new things every day. According to her doctors, she is now "exceeding their expectations in every way." And this is the news every parent of a special needs child longs to hear, especially when given such a grim prognosis in the beginning. Rather than a date we hoped would remain far off in the distance, that "age 5" number is now a symbol of how far we've come.
I think doctors have the most difficult job in the world. They have to be an expert in their field, up to date on the latest research, and carry the hopes and lives of so many in their care. They have to be honest with their families about details few like to discuss. Details like prognosis, quality of life, possible death and coping. I think the best doctors tell you everything good and bad, and along with you hope that your child proves them wrong and defies the odds.
Many friends and family have commented recently on Jenelle's upcoming birthday, and the significance it holds. While I realize we are no where near the reality of that grim prognosis we were given in 2003, I also realize the slim possibility that things could go wrong very quickly. Yet that shouldn't diminish the achievements Jenelle has made and continues to make these past 5 years. We should always keep hope that things will continue to get better. I mentioned to a friend recently that after her upcoming birthday, Jenelle was going to be on "borrowed time". My friend was rather angry with me for saying that. But it is true in a way, albeit very honest and frank. It is all in God's hands and we just get to enjoy the here and now.
I spoke to a Mom a year or so ago who lost her child with Down Syndrome at the age of 23. Her words about her daughter have always stayed with me as she said, "Kelly, don't be sad about her passing. We were blessed to have her in our lives for 23 years! That was 13 years longer than the doctors originally thought! Each day is a gift, and we were blessed to have that gift as long as we did." I remind myself of this frequently - these beautiful special children that enter our lives, and turn our world upside down and teach us new things in life are special gifts that we only get to keep for a little while.
When your child is 10 months old and having 200 or more seizures a day and every medication you try isn't working; reaching age 5 seems a lifetime away. And yet, if someone had told me Jenelle would be standing, crawling and almost walking - I wouldn't have believed them. Not because you believe in the prognosis, but because it seemed so far away it was almost impossible to be true.
The day our neurologist said, "She is doing more than I ever imagined. She is now exceeding expectations", I knew we could breathe a sigh of relief. Instantly I knew that "age 5" was no longer a significant number we needed to pass. And silently, I said a prayer and thanked God for giving us more time with this wonderful, most precious gift.