Beware extreme honesty is to follow and it may not be for the weak at heart.
Shannie has been having some difficult days lately. When she was about 2, I remember so clearly standing with her in the ER - pre G-tube days. She was terribly dehydrated and inconsolably crying. Several staff members had attempted, but been unable to find a vein for the IV drip she so desperately needed. They had all left and just Mark, Shannon and I stood in that room. We were all exhausted as we'd already had several sleepless nights. I looked at Shannie who was so clearly uncomfortable and, frankly, she was much more often uncomfortable than not in those days. I couldn't speak it, but I prayed that if this - pain, suffering, unhappiness, agony - was all our beautiful daughter was going to have please, please take her now.
The fact is God did not take her. They came in to try one more time and asked if it would be OK with us if they got a line in her scalp. Apparently this was something that appalled other parents. We couldn't care less how it looked - just do something! Shortly after that hospitalization a G-tube was placed - a whole other story. After a extremely painful recovery I can honestly say it was a decision we never regretted. It was a huge relief to all of us that dehydration would no longer be a common concern. My thought was that this was a sign that God promised her life would not consist of more pain than happiness and that has been generally true. Days like some that she's had lately, make me question.
Shannon's situation is so unique in our family. Many of our special needs kids came from really hard situations, either physically, emotionally or both. Growing up, getting therapy of all varieties - they have all healed in so many ways. Shannon's condition is not improving, nor likely will it. The spastic quadriparesis, the most severe form of cerebral palsy, that she endures will continue to ravage her body and someday God will say enough is enough.
Since several classmates have suddenly died in the last two years I am more aware than ever of the tenuous nature of her life. I have no trouble visualizing Shannie dancing in heaven and though it will be terribly painful for all of us, for Shannon it will be the end of pain and for that how can we be anything but grateful.
Today we rejoice in another year with our sweet girlie and that it was a year free of hospitalizations or surgeries. We rejoice in every day that she is comfortable and happy and pray for more days when that is true. Next year - Sweet 16, never truer for a girl than it would be for our Shannie.