Running Home In the Storm

(So much going on with a couple of the kids. Details of where things stand and upcoming plans below. As always, prayers would be so cherished.)

Scott and I have realized over the past 40 years of marriage that it’s really important for us to get away from the relentless stress and meeting-of-needs on a regular basis if we are going to stay strong and healthy enough to care for everyone in this family. However, we also know that we must trust God to truly decide how to provide the strength needed to keep up the pace of our lives.

About two years ago, we decided we needed to try to slip away for a few days of deep rest together about every three-to-four months if God provided the funds for that. That sounded extreme to us when we initially kind of fell into this decision. But after much prayer, it really did feel right.

God’s plans were apparently different from ours, though, and it’s been over a year and a half since we’ve had a getaway that wasn’t overshadowed in some way by cancer. So when a friend provided a gift for us to go away together last month, we were thrilled.

But also apprehensive.

The kids weren’t at all in good shape medically for us to be sure we could leave them for a few days. Roslyn is fighting almost constant urinary tract infections and other continual problems related to the failing of her bladder surgery last September. And Kathryn’s bladder and bowel function are deteriorating so rapidly now that she is completely unable to void on her own and requires daily bowel flushes to empty her colon. She, like Roslyn, is also fighting almost back-to-back urinary tract infections and is experiencing much more pain than Roslyn.

In the end, our urology team, who really seemed to want to make it possible for us to take this time of rest, worked hard with us to get Roslyn and Kathryn in a safe “holding pattern,” and pieces in place with our daughter and son-in-law Kristie and Greg in case the girls ran into trouble while we were gone.

So we decided to risk it, knowing that it was possible we would have to come home early.

Greg and Kristie and their eight kids moved over to our house to care for our kids, and dear friends provided meals for all of them every day that we were gone.

We rented a cabin in Hocking Hills, took two of the dogs with us, and had probably the best time away together that we have ever had. While we weren’t able to really manage the deep sleep we had hoped for (our brains are so used to constant planning that they couldn’t shut off completely), we did somehow experience peaceful rest and relaxation.

We had fun, and we had long, uninterrupted conversations with each other, went for walks together, played games, cooked fun meals, and laughed.

Hocking Hills #4

Murray and Godfrey tag-alongs

Hocking Hills 4/17

Goofy dogs

Hocking Hills 4-17 #2

During one of our many walks

Omellete Prep 4-24-17

Preparing breakfast one morning

Hocking Hills #3

Scott’s finished product – Cooking for two is so easy!

Thankfully, Kathryn and Roslyn stayed stable, although not healthy, until we came home. The night we came home, though, Kathryn began experiencing pain again. By the next morning she was really struggling, and by the next day she had also come down with a cold and was absolutely miserable.

Kathryn Pain 4-29

So much bladder pain

Sick Girl 4/30/17

A very sick girl

Yesterday morning (Monday), we had to take Roslyn to Children’s very early for a minor surgical procedure with our urologist. This was the second step of a two-step process to try and prevent her stoma (the opening in her abdomen used for catheterizing her) from sealing closed. This has been a battle for months now. Her other, even more serious, issues will be addressed in a much bigger surgery in October.

Roslyn's 2nd Stoma Revision 5/1/17

Roslyn a little anxious about her IV, which is always a challenge for even the most talented vascular access tech

She did great for the procedure, and our urologist actually spent most of his post-op time talking with us about Kathryn. He is very concerned about her, and it’s clear that we can’t continue like this while we wait for her big surgery date in August. So he has altered the plans for her.

First of all, he has had us begin irrigating her bladder twice a day with Gentamicin. We do this for several of our children, so it’s not something new for us. In fact, we have a freezer that’s used almost exclusively for the storage of our monthly supplies of this medicine for all of the kids who have to use it.

Next, he has scheduled her for a short surgical procedure this coming Thursday.

He will make an opening in her abdomen and place a drain directly into her bladder. This will allow us to stop using the Foley catheters that are causing some of her pain and keeping her at risk for infection. He needs to do some pretty detailed testing on her before her surgery in August, but the tests can’t be done while she has an infection. Four times now, we have scheduled these tests and then canceled them because of infection. It is everyone’s hope that this drain will allow her to remain infection-free for a few weeks so that we can complete this critical testing and have a clearer idea of what’s causing all of her problems. The testing will also enable the surgeon to confirm that his plans for her August surgery are all the right plans.

This drain (called a suprapubic drain, or SP) will remain in place indefinitely, but very possibly for the entire summer until her August surgery. The really bad part of this is that she will not be able to swim at all while that drain is in place. As most people know, we were blessed with a large pool last year when Lilyan was granted a wish by Make-a-Wish. Kathryn loves this pool and looks forward all year to being able to swim. Her sweet cerebral-palsy-encumbered body is so free when she is in the water. It absolutely breaks my heart that she will probably have to miss an entire summer of swimming. But we know that it’s critical that we keep her bladder and bowel healthy and protect her kidneys, so we don’t have any choice about this.

I can’t believe that Scott and I could already feel so completely exhausted and cut off from each other only three days after that amazing time together. Honestly, things have been so hard since we got home, that my heart has longed more than once to run away to our safe little cabin again. But as C. S. Lewis says:

“Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”

We are so thankful that God provided that time of rest. But this is where we live — in the trenches, following the voice of our Leader (who is no stranger to suffering!), and gazing into the beautiful faces of our children who have been used by God so many times to save us from ourselves and lead us into a closer walk with Him.

He will never let us forget that our real source of strength and rest is Him. And over and over and over again, He will give us opportunities to practice running to Him and sheltering under His wings when we are too exhausted to keep going.

“God’s children run home when the storm comes on. It is the heaven-born instinct of a gracious soul to seek shelter from all trouble beneath the wings of Jehovah. Job’s desire to commune with God was intensified by the failure of all other sources of comfort. Nothing teaches us the preciousness of the Creator as much as when we discover the emptiness of everything else. In every trouble we should first seek to realize God’s presence with us. If we can only enjoy His smile, we can bear our daily cross with a willing heart for His dear sake.”
~ Charles Spurgeon
“Trust in Him at all times, O people; pour out your heart before Him; God is a refuge for us.” Psalm 62:8

I’ll close with one of my favorite pictures of our little cabin where we found refreshment and rest for a few days.

But now it’s time to run home in the midst of this storm and seek shelter from all trouble beneath the wings of Jehovah. So I will ask God to forgive me for so often running away from Him in a panic when things get hard, and to help me lean harder into Him and nestle closer under His wings as Scott and I try to hold onto each other and wait expectantly each day for the strength and wisdom to press on. And we will continue to pray for healing for our babies.

Hocking Hills #5

“Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.”

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