“Faith isn’t the ability to believe long and far into the misty future. It’s simply taking God at His Word and taking the next step.”
~ Joni Erickson Tada
So . . . where do things stand with all those Rosenow kids? We have a few answers — in the short-term anyway.
Nathan spent two nights in the hospital, and while we weren’t able to get completely clear answers, we were able to at least determine that the changes and increases in medication were definitely making things worse. He is doing much, much better now that we removed these meds. He is scheduled for a PET scan in a couple of weeks and then we’ll follow up with his neurologist again.
The doctors insisted on keeping Nathan sleep deprived to increase the chances of inducing a seizure; as a result, Scott and I were also very sleep deprived by the time we all got home. Even during the few hours we were allowed to try to sleep, I wasn’t able to. My brain was working on so many things, but for most of that time, I was able to pray and even felt God’s presence and leading in ways in which I’m not often able while walking through the hustle and bustle of daily life at home. And Scott and I made some big decisions.
Some of these decisions concern our almost-adult children and tough choices about their futures. Remember all those little kids we adopted? At one point we had nine children under the age of nine! Well, they are all becoming adults now, many at the same time, and piling up at the front door as Scott and I face the at-this-moment-overwhelming task of getting them out into the world. We knew this day would come eventually. We aren’t sure how it got here so fast. Now that we’re standing on the brink of it and looking at all it will involve, it’s even harder than we expected it to be, and harder in different ways than we expected it to be. I’ll be honest. Sometimes, when I stop trusting God with the things “long and far into the misty future,” I’m absolutely terrified about this next phase of life with them.
I’m tempted to listen to the lies in my head that say, “They would’ve been much better off and had better opportunities if they had come home to a family with fewer children and more money.” That may turn into another whole blog post someday, but for now, I’ll just say that God has given us some clarity about a few next steps, and much peace about trusting Him for the steps after those. And He has also lovingly reminded us that He is the one who decided what family these children belonged in. Bringing them here — to us — is part of His plan for their futures, even if we can’t understand how.
Other decisions we made concern the whole family and choices about their medical care.
During the days leading up to Nathan’s hospitalization, we were listening to our little ones pray before bedtime one night. We were struck by the choice of wording in their prayers. “Dear God, please help tomorrow not to be so stressful.” And, “Thank you, God, that today wasn’t as stressful as yesterday.”
We felt like we were peeking into their little hearts (just as I peeked to snap these pictures) and seeing some of what the past few months had been causing them to feel and think. And while we thrilled to hear them go to their Heavenly Father with these feelings, we also knew that, even though we have to trust God to handle the stress-inducing aspects of our life that we can’t control, we needed to examine closely any ways to reduce stress in areas we can control.
- So first of all, we declared our first full day home from the hospital (a Friday) our second official Tomato Soup Day. This was a good first step toward bringing rest, relaxation, and a re-set into the tense atmosphere here at home.
- Scott and I focused on leaning harder on God for the strength and patience we need to guide the family through this tough patch we currently find ourselves in, and we tried to make ourselves even more physically and emotionally present throughout that whole weekend to give the kids large doses of our time and attention.
- We contacted our urologist and explained the situation, asking if he felt comfortable postponing Jaden’s surgery while we focused on getting the other kids stable. He has been caring for our children for fifteen years now and understands the importance of prioritizing needs. He readily agreed that, while Jaden does need this surgery, some of the other children’s needs are more urgent, so Jaden’s can wait for now. Just knowing we weren’t entering the hospital on Feb. 28 for a 10-14 day stay, instantly removed a lot of stress and anxiety for all of us.
One last thing we decided over that weekend, after checking the weather forecast, was to punt regular school and head to the zoo that Monday for a field trip. We totally forgot that public schools were out for President’s Day, and most of Cincinnati also chose that day for a trip to the zoo. Maneuvering our motley crew and six wheelchairs through the crowds made the day not quite as relaxing as we had pictured, but it was still a fun day.
Then on the way home, things took a very interesting turn when our big van — the one Scott was driving with most of the kids and wheelchairs as I followed behind in the minivan with the rest of the kids and wheelchairs — broke down (again!) on 75N. Initially, Scott and I both felt like putting our heads on the steering wheels of our respective vehicles and crying. Thankfully, that only lasted a few seconds. We, pretty quickly, managed to grab hold of the truth that we wouldn’t be there unless God had some reason born of His perfect wisdom and perfect love and perfect understanding of good, and we put our heads together to begin making plans for getting the van towed and all of the kids and their equipment home.
In the end, a neighbor who happened to already be in that part of town, was able to take six of the kids home; our oldest daughter brought their large van and took home the next nine kids and some of the wheelchairs; the broken van was towed to the repair shop, where it’s still sitting almost a week later; and Scott and I took the rest of the kids and equipment home in the mini-van.
While this incident did add to Scott’s and my stress as the grownups in charge and responsible for handling everything, most of the kids seemed to think it was just a great adventure. Since our biggest concern was trying to alleviate stress for them, we were relieved to see their reaction to this surprise incident. Once we got everyone home, we ended the way we traditionally end days that include car breakdowns. We had ice cream with toppings, and watched old episodes of I Love Lucy. If you’ve read our book, then you know that this tradition dates back to years ago when Scott coined the phrase, “if you can’t beat the dragon, then throw a party.” Overall it was a good, if tiring, day.
The next day — Tuesday — we plunged into one of our most exhausting weeks ever. A week absolutely packed with appointments all piled on top of each other. By the end of the week, we were all exhausted again, and I was running fever and fighting a stomach bug. But we had some plans in place for more next steps.
- A visit with our urologist officially confirmed that Kathryn does have to have a major bladder surgery to build a Mitrofanoff, which is an opening in her abdomen that will allow us to begin catheterizing her every 3-4 hours for the rest of her life. This is necessary because of how very difficult it is to catheterize her traditionally due to her severe cerebral palsy. Our kids with spina bifida have had (or are having) this surgery done too, but for other reasons and with additional steps for reconstruction of their bladders. It is our prayer that Kathryn will only need this one piece done. If that’s the case, her surgery and recovery should be easier than it has been for the other kids.
- One of our big concerns has been when to do this surgery. It needs to be done soon because of the above-mentioned challenges of cathing her when she runs into trouble, but there’s a pretty long wait for OR time for this particular surgery. This wait would push us out to spring or summer, interfering with Kathryn’s swimming. This is a huge deal because swimming is the only real exercise Kathryn is able to get, and that’s critically important for her overall health. We, along with our surgeon, have put a workable plan in place that will hopefully hold her until the end of August. She typically hits a period of urinary retention (which sometimes also includes another urinary tract infection) about every three weeks. In between those times, she is able to void on her own and remain fairly normal, but when she hits these periods, a Foley must be placed for a few days to allow her bladder to rest and re-set itself. While this routine isn’t a viable long-term solution, we feel we can keep it going long enough to get her through the summer. These steps will protect her bladder during the wait for her surgery. So they have set us up with supplies here at the house to continue this cycle: place Foley; let her bladder rest for a few days (treating infection when needed); remove Foley; allow her to empty normally for however long she is able (usually about three weeks); repeat. We pray she will hold steadily to this pattern until her surgery, which is scheduled for August 22.
- Roslyn’s botox injections to her bladder haven’t made any difference at all for her. It’s pretty certain now that she will have to go back into the hospital for another surgery. This one will include the very difficult addition of a bladder augmentation now. That is tentatively set for October once Kathryn is through her surgery.
- We will break for the holidays and then tentatively plan for Jaden’s surgery next February, possibly followed by Lilyan’s that September.
We honestly don’t know how many of these plans will actually end up the way we are hoping, but all we know to do is just keep taking the next step and the next, adjusting as God reveals any changes He has, since He holds the only set of Master Plans.
One last thing. Many of you know that Scott’s younger brother was diagnosed with terminal brain cancer last spring while Scott was going through his cancer treatments. Brian and his wife Karen have been beautiful examples of trusting God along unseen paths as they have walked this very difficult and unexpected way. You can see an awesome video about their story and their testimony by clicking here. Things are continuing to progress for Brian, and while Scott and I know that we will spend eternity with Brian eventually, our hearts have been longing to see him again before the time comes for him to go Home. Finances and the kids’ ongoing medical issues have prevented us from doing that, up to this point.
We feel like we have a better understanding of what’s going on with all of the kids, and now that we have them somewhat stable, we feel like we could slip away for a couple of days with Greg and Kristie moving in here to stay with them. Thanks to financial help from dear friends and our loving church, we will be making a quick run down to Birmingham next weekend. A nurse friend has agreed to be available should Kathryn or Nathan need her intervention while we are gone. We are looking forward to this special time of fellowship with Brian and Karen.
As always, our hearts ache for ways to express the deep gratitude we feel for those who link arms with us, and even carry us when needed. Thank you, all of you, for staying by our sides as we keep taking next steps, one at a time, trusting God to grow our faith and to handle those steps that are not yet clear to us.
Pingback: Though the Winds Blow | Owning My Nothingness