Monday, May 16, 2011
Not an Option...Yet
As parents of children with significant needs, we've learned to adjust to the lack of sleep, the endless hours lost from work due to doctor appointments and such, and the stares of people who don't understand. But there is one thing that I, and some of my friends, are finding hard to adjust to.
As we lift, roll, turn, and steady our children who are unable to do those things for themselves, we are wearing down our bodies. At first, it comes as a general ache, a dull pain that over the counter pain relievers can help. Then it becomes more severe, and our doctors prescribe muscle relaxers, prescription pain killers, and such. But what happens when those things no longer work?
That's where I am right now. That's where my friend, Lynnette, and several others are also.
I have carpal tunnel syndrome. Lynnette has a problem with her bicep tendon. Another friend has intense back pain. And all our doctors recommend surgery. But surgery is not an option.
My surgery for carpal tunnel can't be done arthroscopically. It would involve an incision from the middle of my palm to about 4 inches down my inner arm. It's my right hand. The hand that hooks up Ashley's G-tube for medication. The hand that draws the medication into syringes. The hand that helps feed her - wash her - dress her. A surgery that would put me out of commission just isn't an option.
The same goes for Lynnette. She, like me, is the sole caregiver for her daughter, Brooke. She is the one that feeds her through her G-tube - the one who changes her trach - the one who hooks her up to the ventilator at night - the one who lifts and turns and bathes and changes. Surgery is not an option.
Yes, I realize that we may get to a point where there is no other option but surgery, but we hope and pray that we don't get there. In the meantime, we live with the pain, knowing it won't go away but hoping it will.
The people who don't really 'get it' say isn't there someone who can help you? Well, if there are, we haven't found them. People come and go in our children's lives, but their committment is to a job - 8 hours a day and then a trip home. We're just lucky if they show up for the 8 hours (which they sometimes don't).
Family? - nope, not in my case or Lynnette's case. Hiring a nurse? - nope, already losing so much time from work that money for nursing care isn't there. I just don't know the answer.
I'm not looking for pity, and I know Lynnette and my other friends aren't either. We deal with enough pity already. But if you do have some emotion to spare, understanding would be good.
Just in pain - just sharing - just wanting a little understanding...