I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.
On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.
I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.
Wednesday, October 19, 2005
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I think looking at the strengths is a key to sanity. The smiles and laughs really do contribute and matter to the world at large. You'll be under a lot of pressure to look at weaknesses with the school, doctors, hospitals, social workers. You do what you have to in order to get services. But you don't have to sacrifice realistic expectations for hope and gratitude. And it sounds like you're on the right track.
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