Treading Water

Life has continued to roll along at a pace that takes our breath away and keeps us feeling like we need to move faster if we want to keep up.

I remember when I took swimming lessons as a child. My mother had never learned to swim very well, and was determined that her children would be able to keep themselves safe in the water. I was terrified. Not being able to feel the bottom of the pool under my feet would send me into a panic every time.

Eventually, I did learn to swim well enough to be able to enjoy playing in a pool, but I never liked spending much time in deep water. At the end of those classes, we had to pass our swimming test, and I still remember the stress I felt about that day. The part of the test that I was most anxious about was treading water. Our instructor told us to just relax and try to enjoy the feeling of moving our arms and legs rhythmically while staying afloat.

Seriously!? I was never able to do that; I never got past the fear that I was on the verge of sinking beneath the water, and the frantic feeling of trying to keep that from happening while waiting for her to finally tell me I could stop. I passed my swimming test, but to this day, I don’t enjoy treading water.

That’s very much how we feel most days right now. We knew back in the summer that we were already facing a tough year with three huge bladder surgeries. This is not new territory for us. We already know the things that can go wrong with these surgeries, the toll that being in the hospital for one to three weeks each time takes on our family, the impact of the long and difficult weeks of recovery even after we come home, and the many weeks required to help us bounce back from the fatigue that follows once the get-us-through-it adrenaline drains away.

But we knew that our children’s health depended on getting them done, so we came up with a schedule that we thought would work for our family and that would interfere as little as possible with the kids’ school schedule.

Our plan was to do Roslyn’s surgery in September, 2016. Done. She nailed that daunting item on our check list with amazing strength and came home faster than anyone expected.

One down, two to go.

Jaden was supposed to be next, and for now, he is scheduled for March 2 — exactly when we had hoped they would schedule his so that he can be recovered in time to swim this summer. He had to do a spine surgery first, but that was also a doable thing. So, on January 9, we checked that one off our list, too.

Meghan also had to have another hand surgery, but again, this was a doable thing, so we penciled her in for February 6, hoping to get her well on the way to recovery before Jaden’s big one.

Our perfectly designed plan then had Lilyan going in for her big bladder surgery in September — after swimming season, but in time for her to recover before the 2017 holidays.

This looked like a not-very-fun plan, but one that we could make work. We liked the idea of knowing we would have these major, life-altering surgeries behind us before the end of 2017, and we were ready to put our heads down and get it done.

Then things began to fall apart.

I’ve alluded to these new challenges in previous posts, but I’ll spell them out clearly here so that you know what’s going on and how to pray for us.

Roslyn: Her most recent tests show that her September bladder surgery is failing. Her doctor will try injecting botox into her bladder next week, with the hope that it will resolve the problems. Truthfully, though, we know that this is unlikely. We know that we are probably looking at what’s called a bladder augmentation. This is a surgery that’s even bigger than the one she just came through. We’ve already been through two of these with Caelyn and Owen, and our hearts quake at the thought of doing one again.

Kathryn: Our no-longer-so-little baby Kathryn is now nearing her 13th birthday. She has astounded everyone over the past couple of years with her ability to potty train and achieve total continence. But she is now suddenly struggling with severe and very painful bouts of urinary retention. Each time this happens, we are forced to catheterize her (which is a huge deal because of her cerebral palsy), and twice over the past three months, she has ended up with a Foley (an indwelling catheter) to allow her bladder to re-set and try working again. Her recent testing indicates that the CP that causes her pelvic floor to be incredibly tight is just making it too hard now for her bladder to continue doing its job. Unbelievably, we are probably now looking at having to do the same bladder reconstruction surgery on her that our kids with spina bifida have to have done. It’s possible that we will have to do this very soon. And this is a massive surgery. We have no idea how we could get her through anything this difficult with her cognitive struggles and tendency to begin having seizures when she is under stress. We don’t even want to try to imagine this.

Nathan: This boy (who is actually a young man of 19 now) has been through so much over the past couple of years, and we have been openly rejoicing that he is finally free of pain and wearing his new and awesome prosthesis. This has been like a fresh start for him, and through God’s perfectly designed plan, he was supposed to have started an apprenticeship with his prosthetist on January 17. He was super excited about that. But he is suddenly  having seizures that have put almost everything about his life on hold again. These seizures are, like Kathryn’s, called simple partial seizures, and they are horrible. They usually involve the illusion that walls and/or floors are moving — sometimes undulating. And they sometimes result in actual hallucinations which are often terrifying. We have, for years, witnessed Kathryn’s sheer terror when she goes through her seizures, but because of her developmental disabilities, she has never had the ability to relate to us what she actually sees. Nathan is fully capable of describing in great detail what happens when his seizures hit, and these are more than any person should have to endure. We are continuing to work with our neurologist to find a way to control them, even though we may never be able to discover what’s caused them to suddenly become part of Nathan’s life. He had a severe one this past Sunday afternoon that lasted over an hour and manifested almost like a stroke. During that seizure, Nathan was unable to think clearly, had trouble with word retrieval, and lost most of his control over his tongue, making it very difficult for him to speak. This really scared all of us. Afterward, he was exhausted, had a terrible headache, and felt like his speech and thought processes were slow for the next 24 hours or so. He is currently on anti-seizure medication now, but still had seizures again on Thursday and Friday, and Friday’s was another bad one. We will see his doctor again on January 26.

So where does this leave us? Constantly on alert for Nathan and for Kathryn; unsure what any given day will hold for us. And while we know that we will be having a bladder surgery on March 2, we don’t, yet, know which child will actually be going with us to the hospital that day for surgery. And of course this also now makes it impossible for us to have these big surgeries behind us by the end of this year as we had hoped. Treading water . . .

We are striving hard to release our hold on the plans for our lives and just live life one day at a time, letting God reveal His plans in His perfect time. He’s the only one who knows the script. So we will follow Him. We try, each day, to find ways to keep the feeling of stress in the house at a minimum and to keep life as normal as possible for the kids. They all look to us for some idea about how they should be reacting, and they trust us to keep their world stable. Please pray for us as we try to do this to the best of our ability.

Lastly, I wrote a post on my personal blog last night to share how God blessed our family’s holiday season by using His people to touch our lives. Many of you were praying for us and were even among those who gave of yourselves in some way. Please pop over and read that blog, “And Then There Were Presents; But What If There Hadn’t Been?,” by clicking on the title. That post also includes quite a few photos from this special Christmas season.

And please know how much we appreciate each of you.

Seizure Dog Saxon

Nathan, just beginning to come out of his worst seizure yet. Our golden retriever, Saxon, insisted on staying with Nathan like this until the seizure passed. It was the second time he did this. Dogs are amazing.

Kathryn to the Hospital for a Foley

Kathryn showing relief when she realized we were taking her to have a Foley placed. She has learned that this stops her pain. You can see from her eyes how these episodes affect her globally.

Roslyn - looking healthy

Roslyn, at a recent family outing to spend a gift card, looking deceptively healthy in spite of what’s going inside her unhealthy bladder

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