Jumping in, but with a willingness to start over, sometimes every minute

One thing I will say about Virginia is that you never know how the day is going to go. You cannot predict how well she slept the night before, her level of pain, her tolerance for different experiences, or if all of her equipment will cooperate.

But I know that outings of any sort- from a trip to the park or church to the ultimate challenge of travel- are only going to get harder as Virginia gets bigger, so we try to jump in whenever we get the chance. There are minutes when it feels like we have lost our minds, and we start laughing as we attempt to change a diaper in the car, with Virginia stretched out on the fully-reclined driver's seat of the car, and Wills and Eliza climbing over V's empty wheelchair to make room for Findley and me to work with Virginia. (And there are plenty of times when we aren't able to laugh about any of this at all!)

One truth that I try to keep fresh in my brain is that God's mercies are new and different every day. The manna that God gave the Israelites to eat when they were wandering in the desert spoiled every night. They had to collect new food every morning, and trust that it would be there. This job can feel overwhelming, and it is particularly disheartening when I let myself get mentally stuck in a difficult situation. I have to constantly remind myself that dawn always breaks, literally very good news for me on some of V's sleepless nights. And when the sun comes up, I can find the energy (& usually the joy) to face another day. But I cannot look too far in the future because that's when my brooding gets out of control and the next little task of fixing meds or bathing V feels like it will break me.

There are even times when I need manna every minute because the situation is so painful or complicated. I need to know that there is hope that whatever comes next will be better, and that a fresh start awaits. The truth is I have been given all the arsenal I need to make it through. Sometimes it is something profound that gets me through...like a certain verse from scripture or a nudge from the Holy Spirit.  But more often than not, it's the simple graces God gives every day...a fresh cup of coffee, a funny book, or a good laugh with a friend.

This situation will not be solved this side of heaven. There is no way to live this burden out perfectly, although Virginia herself does a pretty fabulous job of it. I have been working hard to remove the check list of care from my brain when times are good, because I can absolutely ruin a good moment thinking about what unpleasant task might come next!

So for now, we continue to take Virginia as many places as we can, and let her experience all the goodness the world has to offer. We just can't have expectations for what it's going to be like, and we cannot get disheartened on the tough days because morning always comes, sometimes multiple times a day!

 

 

 

 

 

A Quick Update

Virginia is doing remarkably well. She was able to come off the ventilator in the OR and hasn't had any respiratory issues.

Right now pain management is our biggest issue but honestly most of the time she is ok...it is just a problem when we get to the end of pain meds and it isn't time for new ones. For that period of time, about 30 min to an hour, she is really hurting and it is impossible to help her, but for the rest of the time, the pain is tolerable.

Her doctors say she looks like a patient who is 5 days post-op and this is only day 2 for her. I just can't state enough how tough she is and how elated I am at how well she has done. We are all sort of shocked.

There is a tiny chance we might go home today, which is insane. I can't even believe it, but I do know that we can take better care of her at home, so I am thrilled to go.

Our biggest prayer requests are for pain management, for her spirit not to be broken by the pain (we haven't seen a smile yet), and for protection against infection. Sounds like the peak infection days are 7-21.

I'm sorry I haven't updated. I have literally been holding her since she came out of surgery. We appreciate your prayers.

 

Surgery Day

I have been dreading August 18th since we put Virginia's surgery on the calendar last April. I've actually been dreading the entire summer as it would move us closer and closer to surgery.

But it looks like the time is here, and we are ready. Well, actually I don't think you are ever "ready" to see your child in the state Virginia will be in after surgery, but we are as ready as we possibly could be and I know we will be given all the tools we need in those darks moments tomorrow.

Virginia has been in increasing pain over the course of the summer and it has even become harder for her to keep all her food down because her spine is encroaching on her stomach. All of this is confirmation that we have made the right decision. I have a peace about her surgery tomorrow. That doesn't mean I don't feel like I'm going to be sick, but I do have a peace about it.

I also have hope that she is going to feel better in a few months and that what has been a hard season for us may be ending soon.

Please pray for Virginia's safety tomorrow and for the steady hands of her two surgeons. Pray for her pain to be manageable and that she will not know any fear. Pray for no infections. Pray that she comes off the ventilator easily. Pray we don't have to stay at the hospital long. Pray for Wills and Eliza who are scared and about to be passed around for a few days. And pray that all our old anger knows no place tomorrow.

We have to be there at 5:30, so it is way past my bedtime.

Thanks, as always, for caring about our family.