On April 20/2008 I wrote this blog entry....
It's been more than ten years since my hubbie and I had a break together. Ten years of catheters and dirty pull ups, the challenge of clean up bigger with each year of growth. Ten years plus since we've had a night, let alone a weekend, for US. Perhaps were our children typical children this wouldn't matter so much. However, they're not. One of them is very disabled. A second one more mildly so. Both are a lot of work and while the teenagers help out wonderfully they're not yet ready to be asked to take on a weekend. It's too much to ask a 15 yr old to change and catheterize her almost 13 yr old sister. Whats sad? She's willing to learn when nobody else is.
I just want one night. ONE. it would probably do us for another dozen years. Is it really so much to ask?
I guess so.
I've heard different reasons. They make me wonder what people actually think of us, her parents. Those who are afraid to keep her in case something happened. Do they think that we, those who love her most, don't have those fears? I once tripped over her unconsious body when I turned a corner in our house. She was about 3. Soon afterwards her sister came frantically calling me, Brianna wouldn't wake up. yes, things DO happen but I WORRY TOO. It's not just others who are afraid, we live with these fears 24/7. Every hour, every day, every week, every month. all the time, those possiblities are part of the core of our lives. Might we wake up and discover her gone again? Well, even with the precautions we take - yes, we might. Sure, I'd expect a childcare giver to be concerned - but I AM TOO. Those fears that others can't deal with for an overnight are things that we, her parents, have to consider on a daily basis too. I go to bed everynight not knowing what I may wake up to. I've taken all the precautions I can, I've done everything in my power, I pray. Knowing God is in control I pray for His peace and I fall asleep wrapped in His arms. I soo understand the fear that goes with caring for my daughter. I also understand that we need someone to step in and fill that gap for us. It's been said, I think even proved, that couples with disabled children are far more likely to divorce. I can't help but wonder if it's because of struggles like this. Because of the years and years of no breaks. It wears on a person after a while, no matter how much you love the person you are caring for.
I've posted this once and have now added a bunch more to it. It's very possible I'll add to it again. I'm really struggling with this feeling that other peoples fears will keep them from meeting needs - our needs. I'm going to begin praying mightily for someone to realize that God would get them through the same way He does us. To realize that sometimes stepping out of your comfort zone not only blesses the other person, but yourself too.
For now, I'm written out. Whether anyone reads or not makes no difference, I've released this from my mind and in so doing perhaps brought some peace. I'm about to ask God for a miracle. The miracle of a brave and loving soul for my daughter to hang out with occasionally. Someone just like my sister.....
ps. She hasn't seized since she was 5. No more little bodies that wont' wake up to worry about...
I need to share that God HAS answered that prayer. He has sent us the most AMAZING woman. She takes Brianna for days at a time, loves her like her own child, teaches her as if she were her mother. She is a gift straight from Heaven. I get time for myself, we get time as a couple and this anniversary (Nov) we are looking forward to getting away! She is, indeed, a brave and loving soul. She has Brianna and her best friend, another disabled 13 yr old. They love the time together, they love this lady, it's like a vacation every month!
She loved that stuffed mouse. Too much like her mother! 
