Hope everyone had a great weekend.
We are still gathering information about scoliosis surgery. We are going to Dallas, San Diego, and Wilmington, Delware, over the next few months, so hopefully we get some clarity, and ultimately, a level of comfort with our decision.
All children are different, but Virginia certainly is. She is unique enough medically that it is an abnormally difficult challenge to predict how she would do with the surgery. We know she aspirates, but she's never had an aspiration pneumonia. But throw an 8 hour surgery, intense pain, and sedation from pain meds into the equation, and her aspiration risk would go way up. I can't find a similar child with whom to compare her.
Feeling like we are blazing our own trial is a unique challenge at home, too. Caring for her is tough, and getting tougher. We constantly think surely we are doing something wrong, this shouldn't be so hard or what can we change to make this situation more manageable?
We have been working with a new, seasoned PT for a few months. She came to the house last week to try to solve our bathing dilemma. She told me that Virginia's is the toughest situation she's ever seen managed at home. Somehow that statement validated me a little bit. Ok, I thought, this is super hard. And it's not that any one event is overwhelming. We can handle one sleepless night, one exhausting bathing session, one bad diaper/wheelchair cleaning...but then we have to do it again, and again, and again.
Reading the above words makes me sound so ungrateful. I am not. But the mental fatigue of doing the same tough tasks over and over again (and the physical fatigue from years of interrupted sleep) is starting to weigh on us. We have reached a point where we need a lot more help. It might take me a year to figure out what that looks like, but it's time.
We are tired, but the blessing of this...Virginia is not tired. All this suffering has not crushed her spirit. She wakes up every morning (at 4 am...) with a smile on her face. She vomits drainage every morning and she is literally beaming at us in between gags. So that's why we go on, and that's why I would even consider asking her to endure such a huge surgery. She is super happy, and she loves her life. I am not being selfish to try to keep her here for as long as possible.
It is also time to give ourselves a break. This isn't easy. There is no road map. There is nothing out there that is going to make my life feel organized or my parenting feel purposeful. I need to be ok with Wills' 17!! tardies, filing an extension on our taxes, not getting Virginia in her stander for an hour every day, and eating too many donuts! The guilt will kill you as a parent, and as a perfectionist, this is a nearly impossible situation to conquer.
Thank you for praying for us and for our decision.
We did make it out of town for Spring Break. It wasn't quite the Virgin Islands, but we had a great time! Findley loves his new van,
Even I was thankful for it on the trip bc our 9 hour drive took 13 hours!! Our average speed was only 44mph!! We would have gone crazy without the extra room and honestly, with all Virginia's needs, that's just how long traveling takes us. So good call on the van, honey!
But the drive was worth it,
V and I are asking for beach tires for Christmas! That was a workout!
Wills' 9th birthday was on Good Friday. We had an extended celebration...first with Coleman and family the weekend before,
Then at the game with Alex on his actual birthday,
And pizza on Mud Island too
It was a blustery day on the river!
V wasn't sure what to make of all the wind,
Our cherry trees looked beautiful last week, and I am so happy spring is finally here. Virginia is cracking up because we are making the cherry blossoms rain down on her head,
Easter was extra special with this nut,
Eliza started soccer,
Wills built a 'robot' with a toothbrush,
And once again Findley is as old as I am. Thank goodness!