While baking Christmas cookies today, the thought crossed my mind that our life is like a stained glass window. That moment that David fell off that pole, our colorful, happy life as we knew it shattered to a thousand pieces. But it isn't for naught. Slowly, the colored shards are being pieced back together into another picture by the master Artist. It's painful to have them fitted back together. Sometimes the pieces don't seem to quite fit right, but then at the last moment, when it seems we can't bear it any longer, He welds in another small piece to make it a little more comfortable. We don't see the whole picture in the window yet but He has a plan and He will shine through this life too.
Last week, it seemed He was melting the glass or filing sharp edges off. Whatever He was doing was not comfortable! Long story short, about 4 doctors gave 3 diagnoses to us for reasons why David was having severe abdominal pain. After several tests, he ended up in the hospital overnight, for what ended up being a fairly simple problem that I could have handled at home, had I known it wasn't something as serious as the doctors had diagnosed in the beginning! It left us all pretty ragged, unrested and with very contemptible attitudes.
Some of the old pieces are being fitted back into our new life. It's surprising when I recognize an old piece because I've gotten so used to it being gone. Here's an example: when we were first married, David showed high esteem for my cooking and decided that I was the best cook in the world. Maybe I took pride in this a little too much because when, for the last year, he hasn't praised my cooking much and even declared it "nasty" a few times, it rather deflated my balloon. Last week, he surprised me with a comment. I told him the options at the potluck dinner at church. He just wanted what I made because it was the only dish he "trusted." This made me chuckle inside because there are lots of other good cooks in our church that he should trust his palate to. It's kind of a silly thing, but I think he thinks I'm the "best cook in the world" again.
This week has been a better week, but still has us on our toes, doing things differently or new things. David was doing some pretty intense vocational rehab testing for Monday-Wednesday. My parents were here for a couple months and took care of Jocelyn when I was taking David to therapy. In these last two months, she has turned into a monster for staying to watch David's therapies. I've decided to step back a bit for my mental health, for David to develop more independence and for Jocelyn be able to just be a regular 20-month old wild thing that doesn't have to be caged up during hours of therapy. I think it will be better for all of us.
I don't remember who I've asked for prayer about this but I asked some to pray that his new wheelchair would come before our trip to CA at the end of the month. The prayer has been answered and we are delighted to get it the day before we leave! :)
Sunday, December 21, 2014
Tuesday, December 9, 2014
Everyday Life When You Are Married to Someone With a TBI
Everyday life is busy, just like everyone else but not like everyone else. It involves lots of phone calls, visits, and emails to therapists, doctors, nurses, and other practitioners. We never know what a day will bring forth. This year, David has been under the care of probably 20-30 different people, or possibly more.
Lately, we made changes to our caregiving schedule to consolidate cares and free up some time for family, just us time. We haven't really hardly had any "us" time in a LONG time. It puts a strain on things, because we can never talk about private family matters even at our own dinner table. It's come with it's own challenges, as it always does, but I like it. Instead of having caregivers 15 hours a day, they are here 9 hours.
I feel like a fire fighter or maybe, a babysitter/ manager would be a better description. I'm constantly having to follow up on new things we're starting such as orders, appointments, new schedules... Nothing is cut and dried. It's always refreshing when I get someone on the phone that follows through right away or does their job right the first time. For example, I had to call and/or email the scheduler for our caregivers FIVE times regarding one caregiver's schedule with David. We've been in the process of getting David a new wheelchair for FOUR months. Meanwhile, David's physical medicine doctor had to have an emergency procedure and is out of his office for an indefinite amount of time causing David's botox injections to be delayed two months. I could write a book just on the reasons that caregivers come up with to either not show up at all, be late, or be unable to fill the position after training. It's unbelievable, really.
In other ways, our life is normal. We go to church, we eat meals together, we scramble after a very active, smart 19-month old, we go out to eat, we go on walks (weather permitting), we get together with friends, we celebrate holidays with family...and we are very thankful for these things.
Things to pray for and praise for: David is still having almost constant moderate to severe headaches despite numerous drug interventions, massage, positioning and other interventions and a clear CT scan, David's walking, bed mobility, interaction with people and environment continues to slowly improve.
Lately, we made changes to our caregiving schedule to consolidate cares and free up some time for family, just us time. We haven't really hardly had any "us" time in a LONG time. It puts a strain on things, because we can never talk about private family matters even at our own dinner table. It's come with it's own challenges, as it always does, but I like it. Instead of having caregivers 15 hours a day, they are here 9 hours.
I feel like a fire fighter or maybe, a babysitter/ manager would be a better description. I'm constantly having to follow up on new things we're starting such as orders, appointments, new schedules... Nothing is cut and dried. It's always refreshing when I get someone on the phone that follows through right away or does their job right the first time. For example, I had to call and/or email the scheduler for our caregivers FIVE times regarding one caregiver's schedule with David. We've been in the process of getting David a new wheelchair for FOUR months. Meanwhile, David's physical medicine doctor had to have an emergency procedure and is out of his office for an indefinite amount of time causing David's botox injections to be delayed two months. I could write a book just on the reasons that caregivers come up with to either not show up at all, be late, or be unable to fill the position after training. It's unbelievable, really.
In other ways, our life is normal. We go to church, we eat meals together, we scramble after a very active, smart 19-month old, we go out to eat, we go on walks (weather permitting), we get together with friends, we celebrate holidays with family...and we are very thankful for these things.
Things to pray for and praise for: David is still having almost constant moderate to severe headaches despite numerous drug interventions, massage, positioning and other interventions and a clear CT scan, David's walking, bed mobility, interaction with people and environment continues to slowly improve.
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