|my beautiful angel waiting to go into surgery...|
|part of her tattoo is still on after surgery|
|welcome summer picnic!|
Hmmm.... I remember that day like it was yesterday. We moved back here because we needed the family support, but... this place was our Africa. You know the prayer, "Lord, please don't send me to fill in the black. I'll go anywhere but here. We didn't want to live in here. We always thought we'd be able to talk Grandpa and Grandma into visiting for a month or two each year, but live in the tundra? Heck NO!
Yet... here we were. the place we needed to be. the place we had to be. I felt like I returned with my tail between my legs. Back home because I couldn't make it away from my family. I felt weak and defeated. This wasn't how I saw my life unfolding. We weren't doing the things typical families do even though we now had one typical kid. We tried to act normal. We knew our situation was best to hide as we wrongly laid the problems we had in SC on it. So... we decided to pretend we were fine because often we were, yet I had no idea how I was going to make this normal work because we were so NOT normal.
... I sat across the table and told the nurse what Abby could and couldn't do. Her list of couldn't was longer than I thought it would be. I'd seen some progresses, but it was here that I realized how far she fell further and further behind her peers. We visited amiably. We were finishing up and she lost me when she said something about a Personal Care Assistant and choosing an agency or finding people on my own. Seriously? I was going to be able to hire someone to help me with Abby's care? Take her to therapies, bath her or work on her home therapy goals?
I started to cry... I was so grateful for the reality that someone else was confirming we needed help. I wasn't just a pathetic mom who was so worn out I couldn't think straight, but someone else saw the difficulty of the job I had been shouldering!
Since that first meeting that first summer here, each and every meeting has been very friendly and I've always felt I had people on my side who were just there to lend a hand. They've always been kind and considerate, yet I scrambled around picking up the house and wondering why I was once again nervous for this meeting...
We had another friendly chat. I'm used to this path. The two gals who have come the past several years are wonderful ladies whom I totally enjoy and might even be friends with given the opportunity outside of a conflict of interest... someday. It's nothing new, yet I always feel down for a day, two or so after this day... Sitting in the bath tonight it came to me...
I measure our days in progress
I measure Abby by different standards such as calmness, happiness, pleasant interaction with her sisters, a random hug from behind, a giggle or that amazing smile that lights up her entire face!
This day is...
- measuring Abby's deficits
- calculating how far she falls further and further behind her peers each year
- Talking about all the doctors and therapies she needs
- listing all the specialists on her team
- ordering equipment we'll need to continue home care
- figuring on one-on-one care for nearly every moment of her day that she is awake for her safety
- talking about life after school
- voicing the threat of safety for the family surrounding her and defending her behaviors as "not too bad"
- listing medications, braces, glasses, special equipment used
- talking about home modifications as surgery looms somewhere in her future
I need help to take care of my child... a lot of help... a team in fact (as they call it).
All our successes don't stack up to much measurable progress.
Another year has gone by and the biggest gain has been in her height and weight which amounts to more care rather than less.
Sure, I'm grateful don't get me wrong but still saddened by a reality I avoid focusing on most days because I chose to see the glass half full rather than half empty.
I find small victories and voice them...
- pinching is down if you squeeze her hand just right
- she doesn't intentionally break stuff, but maybe she just likes the sound of stuff falling/breaking?
- she doesn't chase us around to hurt us, but pinching/scratching/biting are sensory seeking?
- she is more stable and walking without her braces sometimes
- she can use a spoon a bit now
- She has toys she likes
They've learned to celebrate with us even if it doesn't matter in what they've come to measure.
I put today behind me with its lists of inadequacies. I see this list as a means to an end. This all needs to be measured. There has to be a method to decide how much help Abby needs. It may be painful but it's necessary.
I swallow my pride and reality pains and replace it with a grateful heart. Blessed by this day and these people. All grace given us this day. Measurable grace. Abounding in grace. Overflowing in and through our lives and evidenced today.
This day next year... maybe I'll connect my head to my heart and feel this day as the blessing it is rather than the curse it's felt like...