I struggle constantly with how & when to include Virginia.
Funny as this sounds, at my core, I am an optimist. I still think that this situation has to get easier.
It doesn't. It actually gets harder.
I have been talking to different people who might impart some wisdom on this balancing act, this meshing of two different worlds, but no one has any answers.
One doctor earlier this week suggested that we"triage" our family, and "save what can be saved." After I threw my diet coke at him, he said I can't continue to be a full-time caregiver to someone with increasing medical needs, a wife, and a mother to two other kids all at the same time. As much as I appreciate someone acknowledging that this is a pretty impossible situation, his solution of hiring 24 hr medical care for Virginia and moving on with our "normal" lives obviously doesn't work for me.
On one end of the spectrum, you have parents with "a Virginia" who institutionalize their child. You could shoot either one of us before we'd let that happen. But on the other end of the spectrum are people who put their Virginia on a pedestal, and their lives revolve around her and no one is allowed to experience life's goodness anymore.
Before Wills and Eliza were born, I was pretty close to the pedestal end of the spectrum. My baby was hurting, it wasn't her fault, and I couldn't bear to experience any happiness I knew she couldn't. I learned this from Nana, who essentially died the same day my mother did. Not that I blame her, but everything from that point on revolved around the void my mother left.
As we move out of the little kid phase, the number of activities Virginia gets left out of has increased. Older kids make for busier families, whether we like it or not. And as much as I want to have Virginia with me all the time, it is physically not possible for her to be a part of many things we do.
We were on vacation last week and went out to dinner and then to play putt-putt. It was awful. She stared at every bite we ate, and then got fussy. Of course she did. Who wants to watch everyone else eat hamburgers and french fries? Then we tried putt-putt because Wills has always wanted to play. It was worse. She had an absolute meltdown and ended up watching a movie in the car while Findley and Wills frantically played about 7 holes.
It's not fair to Wills. It's not fair to Virginia. There is no harmony, only chaos. All I want is for our family to sit at the table and break bread together, but it's not going to happen. And a million times each day, I am faced with a question that has no good answer. Do I leave her out? Does she stay home when we play putt-putt? Does she watch a movie while we eat dinner?
I end up making a lot of game time decisions, judging each meal, each outing as it comes. I told Dad the other day that every time I leave Virginia to do something I know she would enjoy if she were able, it breaks my heart.
"I know," he said, "And it always will."
I think the only real wisdom is in acknowledging that this is hard and sad. There are no easy answers and it's not going away. Virginia's suffering is profound, but all of us who love her are more than willing to sacrifice our "normal" to share in it.
Virginia is getting really tall,