“God is ever bringing good to us, never evil. He goes before us and scatters the furrows full of seeds — seeds of light. It is not visible light that He scatters, but dull seeds, carrying hidden in them the secret of light. Then by and by, as we come after Him, the light in the seeds breaks forth, just at the right time. And our way is made bright. There is not a single dark spot in all our path, if only we are living righteously. There are places which seem dark as we approach them. We are afraid, and ask, ‘How can I ever get through that point of gloom?’ But when we come to it, the light shines out and it is radiant as day.”
~ J.R. Miller (1840-1912)
Some of you who follow me on Facebook may have seen a few cryptic comments here and there this past week about tough days. I sometimes feel that I’ve turned into quite a whiner lately, but . . . wow, this week has been hard!
For those of you who like details about our life, I’ll share them below. Those who don’t want so many details, feel free to just skim (or skip over). There are a lot, and these are just the most critical moments and don’t include things like dead car batteries, and sudden broken toilets.
- Got up early to prepare for the volunteer demolition team coming in to finally tear out our old kitchen and prepare for construction of our accessible bathroom (Yay!)
- As the morning progressed, Kathryn showed signs of increasing discomfort at her abdominal drain site
- Continued getting four other kids ready for eye appointments, but as we were loading the van, Kathryn dissolved into pitiful sobs because her pain was so intense. We discovered that her drain was clogged again, and after much work we were finally able to clear the clog and get her bladder emptied. But her drain site was hurting more than ever, and didn’t look exactly right to us. We took a photo of it, gave her pain meds, set her up with Moana (her favorite movie these days), and assigned an older sister to do nothing but sit by her side until we could get back home. Then we dashed out the door late, calling urology nurses on our way to the eye doctor.
- During the drive and our time in the waiting room, I had multiple conversations with a couple of very attentive and concerned nurses as they took a look at the photo we emailed to them showing the worrisome parts of Kathryn’s drain site.
- While I was tied up on the phone, one of our teens texted Scott to say that Murray had just bitten one of the volunteers who had given up his day to help with the demo in our house. This volunteer was headed to the hospital to have his hand stitched up.
- Several hours later, we were finally on our way home with prescriptions for new glasses for three kids, a temporary plan in place for Kathryn as we waited to see her surgeon on Wednesday, and our heads spinning about what our dog had done.
- Spent the evening checking in with Murray’s victim (who was incredibly kind and gracious about the whole incident, easing some of the stress we were feeling), researching dog bite laws in Ohio, and trying to reach the trainer who worked with Murray before he ever came to our family.
- Learned that we would eventually get an official notice from our county Board of Health explaining details of what would happen from that point forward, but that it would involve at least some kind of quarantine for ten days.
- Fell into bed late and exhausted, but got almost no sleep because of our great concern and high emotions over the fact that we now owned a biting and unpredictable dog.
- Got up early again to prepare for the construction crew’s arrival, and a post-op appointment for one daughter.
- Made a plan to keep Murray isolated from everyone as we continued trying to understand the laws in Butler County and continued trying to reach Murray’s trainer.
- Took time to explain to the construction crew that we now have a dog who is considered a “dangerous dog” by the state of Ohio, and that we would be keeping him away from them, but that, if he should get out of the bedroom we were keeping him in, not to go near him.
- Tried hard to grab a few minutes here and there to discuss long-term plans for a dog who has inexplicably been gradually becoming more and more aggressive toward strangers and toward our younger kids. During every spare minute, searched the Internet for rescue groups who help with re-homing such a dog.
- In the afternoon, we dashed to a stressful appointment required by the state to determine that our congenitally developmentally disabled daughter is still congenitally developmentally disabled so she can continue receiving her SSI benefits.
- Got back home for a late dinner and tried to help the kids begin working through the emotional upheaval of all that’s going on with a pet that was once loving and gentle, but no longer allowed to be near them.
- Fell into bed late again, and still got very little sleep. However, during this night, I began to feel a supernatural peace and assurance that God was still very near us through these difficult events, as well as the unknown ones to come.
- Up early again, and continued contacting rescue groups until I received confirmation that no one would help re-home a dog with a history of biting and aggression.
- Headed out for two appointments that morning.
- After these appointments, we tried to shut out everything and enjoy a precious time with a granddaughter as we took her for her birthday outing with us. In spite of the fact that we actually hit and killed a robin in the road on the way to this outing (and that I began to think that maybe this was the final straw for me emotionally), we were able to rally again and have a beautiful and very special time with this granddaughter.
- Afterward, we dashed back home to pick up Kathryn and Roslyn so we could finally go see our urologist — we’d waited so long for this appointment!
- As we were leaving, we finally heard back from Murray’s trainer who wanted to talk. Had a long phone conversation with her as we drove to Children’s, and she very kindly comforted our hearts by assuring us that this was not our fault (irrationally and emotionally, we had been feeling like we had somehow done something to turn this marshmallow of a puppy into a killer dog), and expressing as much confusion as we were feeling over the changes in personality we’ve seen in our fluffy dog over the past few months. She also made it clear that this was a very serious dog bite and that she also felt Murray could not stay in our home with our children any longer, but assured us that she would take him back, check for any medical conditions behind the changes, and observe and assess his potential for retraining and placement in a home with no children. She has always loved this dog and possesses the skills to tackle his challenges now, and she promised that she would take very good care of him for us. We made tentative plans for a hand-off, but couldn’t finalize anything until we got the promised official notice from the county.
- After the phone conversation, we arrived at our afternoon urology appointment early for a change, only to be told that, although someone had told us the appointment was for 3pm, it was actually for 11am, and that we had missed the appointment now and the doctor was gone. As Kathryn sat in her wheelchair beside me, whimpering because of the discomfort she was feeling, I felt the tenuous threads holding my emotions together begin to unravel. I was barely able to speak or hold back the tears as I tried to explain that this mistake wasn’t our fault and that we absolutely had to see the doctor. A very tense hour passed as everyone tried to figure out what to do. Finally, they told us that the doctor was on his way back to the clinic to see us and that our 15-year record of never missing an appointment with them carried a lot of weight.
- Had an hour-long consult with this doctor who determined that some of Kathryn’s current discomfort is due to the fact that her skin is reacting angrily to the sutures holding the drain in place. He gave us instructions for dealing with that, and we discussed detailed surgery plans for Kathryn on August 22, and Roslyn on October 5. He also confirmed during this visit that Kathryn’s bladder is in really bad shape (as we had been fearing) and that it will almost certainly require a much more significant surgery in addition to the one already planned — a bladder augmentation. This is a procedure that involves taking bowel tissue and using it to add to the bladder to increase it’s size. There is the option of doing the still-major-but-smaller-already-planned surgery first, combined with Botox injections to the bladder over a few months to a year to see if that might increase her bladder function and capacity. Then we would proceed with planning this much bigger surgery next year if the Botox doesn’t work. This is all sounded eerily familiar as this is exactly what happened to Roslyn. And the botox didn’t work. That’s why she will be having a bladder augmentation on Oct. 5. After much discussion, we made the decision to try this conservative route first because augmenting the bladder with bowel tissue brings a host of new challenges into the picture. We already know about these challenges because Caelyn and Owen both have already had this daunting surgery done. One of these challenges is increased risk of bladder cancer down the road. Up to this point, the urology team had been able to say that none of their patients had ever developed cancer. This team takes extra precautions post-operatively that aren’t always taken by other centers, and they had hoped this decreased their patients’ chances of developing cancer. These increased precautions still may well help, but our surgeon shared with us that day the heartbreaking news that two of their patients had recently been diagnosed with metastisized and terminal bladder cancer. These teens/young adults and their families are now preparing to say goodbye to each other. This left our already-raw hearts aching with sadness, fear, doubts. But the bottom line is that, we know we have no choice. Children with spina bifida usually died in their 20’s from renal failure just 20 years ago, and the quality of life during those 20 years was not good. They were in and out of hospitals with renal issues and infections, and fought with body sores from their poorly-controlled incontinence issues. Our children live near-normal lives now because of the still-imperfect medical advances, and we are so thankful for that. But this was a sober reminder that our babies have very serious disabilities, and that they all face the possibility of short lives here on earth. We left there with so many mixed feelings, but one of these was gratitude for our great urology team here at Children’s and for nurses and doctors who truly care.
- Arrived home and discovered that an officer from the Butler County Board of Health had finally delivered our letter, but it was way too late to call them that evening.
- Had a late dinner with our kids and another late bedtime, but the strong sense of God’s presence that had started the night before only increased all through this hard day, and we slept much better that night.
- Woke early again, and armed with our official letter, the name of the officer assigned to our case, and a phone number for (supposedly) reaching him, we began trying to put together a clearer plan for handling the situation with Murray. The trainer who will be taking him back had asked if we could just help with the expenses as she tries to determine whether there is a medical reason behind this onset of aggression, and we happily offered to have blood drawn here with our vet who already knows him. So first we had to find out if we could even take him to the vet while in quarantine. We learned that there are different opinions about this.
- After multiple phone calls we learned that 1) the officer assigned to our case was out of the office all day, and 2) that, yes, we could take him to the vet for blood work.
- Called the vet and got an appointment for that morning because we were already booked for other things in the afternoon.
- Rushed like crazy to get Murray to this appointment, but when we were almost there, the vet called Scott’s cell to tell us that we had been given wrong info and that he absolutely would not touch our dog until his quarantine was over. We turned around and went home.
- Murray’s trainer had also told us that, if our Board of Health would give their okay, she would take Murray immediately and care for him through the quarantine period and then begin his retraining and attempted re-homing. Again, after multiple phone calls, we learned that we could not take him to another county during the quarantine period.
- Made a detailed plan of keeping him as isolated as possible until the quarantine ends. Then the day after his quarantine, Scott and I will take him to his trainer where she will begin the first steps of determining what his future holds. After kissing our dog goodbye, we will come back home and try to help our children through the grieving process of all that this sad situation has brought into our lives.
- The morning started with a phone call from urology surgery scheduling, telling us that the girls’ surgeries had each been pushed out a whole month! We were so unhappy to hear this. Sometimes, in-demand surgeons’ schedules change suddenly and surgeries that were scheduled way out have to be rescheduled to fit around those changes. We made several more phone calls trying to see if there was anything at all that we could do about this because of all that both girls have been going through for months as they’ve waited for these surgeries. The week had already been such an emotional one, and we reacted emotionally. In the end — actually literally mid-sentence with a nurse on the phone — I felt a still, small voice say to my heart, “Will you trust me to work this out?” And I was instantly filled with such a sense of peace that God was in control of these details, and that these nurses were stuck in the middle and that I could not control this change of plan. I was able to honestly express gratitude to these nurses for the tough job they have when they have to call families with this bad news and then do their best to reschedule everyone; and I was able to whisper to God that I would choose to trust His plans for our babies.
- We changed their surgery dates on our calendars, and I began to make a list of the 16 already-booked appointments that I would have to reschedule because of this new plan.
- Two hours later, surgery scheduling called me back to say that they had managed to find a slot to get Kathryn in three weeks earlier than her original surgery date, and Roslyn in about three weeks earlier than her original date. This was wonderful news! And we took some deep breaths and changed our calendars again. Kathryn will now have surgery on Aug. 8, and Roslyn on September 21.
- Another busy day, but, thankfully, less so than the rest of the week had been. But Kathryn did have a terrible episode of pain, clogged drain, and then agonizing bladder spasms in the afternoon.
- Took us quite awhile to get her through this, and I was once again thankful for these new earlier surgery dates. Music is a powerful tool for Kathryn, especially if she can use earbuds for listening and shutting out all that’s going on around her. So, pain meds, Mommy and Daddy and several sibs around her, and music playing into her ears all helped to finally calm her, and she did much better for the rest of the day.
Now it’s Sunday. The date is June 18.
And it’s Father’s Day. (Happy Father’s Day to Scott, the most incredible father I’ve ever known!)
And it’s Scott’s and my 40th wedding anniversary.
Forty years! I can’t believe it. Didn’t we just celebrate my parents’ 40th wedding anniversary?! And such a full, beautiful, painful, full-of-growth, terrifying, surprising forty years it’s been!
We could never have predicted this life that day as our eyes locked during my walk down the aisle on my dad’s arm. Wow!
Some of our adult kids surprised us by renting, months ago, a Hocking Hills cabin for us for a few days away again. The events of this past week caused us to seriously consider cancelling our plans for this getaway.
But this was a gift sacrificially given, and the money is all non-refundable. In the end, they have convinced us to go ahead with our plans and leave them here with the almost unbearable and unpredictable challenges presented by Murray, Kathryn’s very up-and-down days, and the construction going on right in the middle of our living space.
We are a little bit afraid that we won’t be able to mentally and emotionally leave all of these stressors behind and that the money and the time away from our kids will be wasted. But we are going to try.
We know that each thing that happened during this past week was, as Miller said above, a seed — a seed scattered by the hand of God. Each of these seeds has hidden inside of it a secret, not-yet-visible light. And if we need to see it, then at just the right time, God will make this light visible to us, and the confusion and seeming chaos will all make sense. But if He chooses not to reveal these things to us, that doesn’t make them any less right and good and sent-with-love. We can trust Him with every detail of our lives, even in the darkness.
We recognize that this gift from our kids is actually a gift from our Father who loves us and promises to care for us and give us the strength to carry on each day, and we are packing our van and driving away this morning for a few days alone together. As we drive away, we will be asking Him to keep everyone safe and everything calm here at home, to enable us to leave it all in His hands, and to focus on our time together as we reflect on the incredible journey He started even before that summer day in 1977 when the two of us pledged our hearts and lives to each other forever.
Would you join us in praying for these things, too?