When I left off, we had just started receiving care giving hours for Joseph. This was a big change and so helpful as Vivien already had hours. Because online school started around this time for both of them we were able to have the caregivers help with their zoom school. Schooling over zoom was incredibly time-consuming so this was a huge relief.
We have had help in the past for Lucie and Iva for school but having Vivien - and now Joseph taken care of for more hours in the day freed me up to help Lucie and Iva. For the first time, we didn't need a tutor to come in to help for a few hours every week.
Near the end of 2020 there was talk of the possibility of returning to in-person classes for Joseph and Vivien but as the time drew closer much of it was up in the air. Though it was “returning” for most kids, it would be the first-ever that Joseph would attend school. We ended up having to wait a little longer, in order for them to continue on with the teacher and paraeducators they had been familiar with over zoom.
February brought snow as Seattle had one day of lots of accumulation. Being out in the cold is not Viv's cup of tea, but Joseph was thrilled. He got to come out and see the snow, and then do a little sledding with us at night. He loved it and was sad when bedtime came.
As March approached was a lot of push back as schools moved toward in-person learning and I attended a virtual school board meeting that was definitely intense. People felt very strongly because lives were at stake. However, some of the fear bordered on the irrational at this meeting with one person saying that if we moved to in-person learning children would go to school, only to watch their peers and teachers die off. Thankfully, I do not believe there have been any teachers or students who have died in WA since in person schooling began this year. Vaccinations were becoming more and more available at this time.
Finally, we had a date for in-person learning. Most children were going for half days, but since Joseph and Vivien had so much therapy in the afternoons after class, we requested full-day schooling for them and it was granted.
When Vivien first went to pre-school several years ago, I was able to go volunteer in her classroom for the first week, in order to help with troubleshooting the pump, helping with positioning, and fussy-ness. I continued to volunteer in the classroom weekly for the first year, and occasionally during the second. However, of course, with covid, this was not going to be allowed this time. So I spent several hours creating paperwork that included detailed steps for the pumps, their daily needs, their positioning and medication. The school agreed to a two-hour training time in which I could show all of the teachers, para-educators, nurses, and staff what needed to be done.
As the day approached, I was incredibly nervous, hoping that I would not forget anything and wondering how I was going to show and communicate all that needed to be done to care for them. When I arrived there were about 15 people waiting for me, including the principal and assistant principal. Everyone was decked out in full PPE including masks, with face shields on top of those, gloves and gowns. The district was taking no chances.
However, I found everyone there eager to learn and accommodating. It was good to see in real life the faces and voices of their teacher and paraeducators we'd only heard and seen over zoom for the past few months. Vivien has a full-time dedicated para for her, and we are hoping for this for Joseph eventually. Vivien was her normal self, in her own little world, with occasional interaction and smiles. Joseph loved going to a new place, meeting new people and receiving so much attention He turned on the charm, grinning at everyone and capturing them all. After our day of training, we had a few days and a weekend to wait before the actual starting day.
I had a fairly quiet day at the school library, in which I got a lot of computer work caught up, and though there were a couple questions I answered, everything went smoothly. I went home about an hour before the day was over to be ready to greet them at home and Joseph seemed just as happy as when he left and Vivien was great too. I was told that the day went well. They are in the same classroom, and though Vivien doesn’t really notice him, Joseph is clearly aware of where Vivien is at all times. He is happier when she is around and even one of the paraeducators commended on how he keeps an eye out for his sister at all times. I was so glad they could be together in the special needs classroom.
In the subsequent days that followed, it was clear that Joseph absolutely loved school. He was always excited to get onto the bus and when he got off, he was generally happy. There was a little red book their teacher would send home letting us know how their day went and if there were any struggles with vomiting or if they needed anything. I was thankful for these little books and so pleased and relieved by how well both of them did and how much they enjoyed it. Vivien is a fairly content, happy little person no matter where she is and she enjoys the attention and time given to new sensory activities.
We did have a very frustrating experience about a week after they started school. The other kids in our family had gotten a cold and with all that was going on with covid and the skittishness of the school district, we were able to get them tested for covid and they were negative. Joseph and Vivien had a couple of days of light symptoms where we kept them home from school. We also immediately got tests for them and they were both negative as well. I waited an extra day out of precaution and then sent Joseph back to school. Vivien had had fever but he had not experienced any fever and just had a day or two of minor symptoms.
However, when I tried to send him back to school, they sent him home, citing congestion in his chest and breathing. Everyone in the family was surprised. Joseph always sounds a bit congested and wheezes at times. He was no worse now than he always was. To make a long story short, we ended up having to work very hard at explaining he was not sick, but to no avail.
Eventually, we had to get a note from the doctor to convince the school that Joseph was not sick and that both he and Vivien had congestion as their baseline. He spent another week at home after only being at school for a few days. It was frustrating for him as he had really been enjoying school and he was clearly (to us) not sick. But after the note from the doctor, they were finally able to begin again.
It felt almost surreal those first few weeks to have both Joseph and Vivien gone and have several hours at home each day without any caregivers or therapists. We were able to focus a little more on schooling for the girls and I had a backlog of projects and home chores that I was looking forward to working on. It just felt good also to have a quieter home. I can be extroverted, but the older I get the more I say I’m maybe 51% extrovert 49% introvert because I do enjoy my alone time.
The next hurdle to overcome for Joseph was figuring out the right medication. Late fall of last year we had gotten him off of the medication he had been on in Uganda. It took almost a full year and lots of conversations with the rehab doctor and nurses to taper off. Then throughout the fall and winter, we began different medications the neurologist suggested, some of which were terrible and didn't work at all.
When we tried baclofen, a common medication for people with CP, it seemed to work wonders. But it was like his body kind of got used to it and overrode it. We kept needing to increase the dose.
He and Vivien were both struggling quite a bit with vomiting, for different reasons. Viv's had to do with her stomach. She has always had stomach issues, even a few days after she was born but recently it had gotten worse. Thankfully we found a medication for Vivien that didn't get rid of vomiting but certainly decreased the frequency.
Joseph struggled for a different reason. His body wiggles and contorts and anytime he is in a healthy midline position like in his activity chair or stander, he tends to struggle with vomiting more, especially as we would near the end of the dose of baclofen and it was wearing off. It was like his body was fighting to contort instead of being in a more healthy physical position and it would fight so hard that he would end up vomiting.
We ended up trying another medication in tandem with the baclofen that both calmed his body and decreased the vomiting. We were so happy to find something that actually worked. Since then, we have really felt like his body has stabilized and life is less filled with vomit. In some ways, Joseph and Vivien’s vomiting has become normal and I take it in stride, but it does take an emotional toll. It just feels like a lot of drama when your day is interrupted multiple times and you have to go through the whole process of changing clothes, cleaning their body, and cleaning up whatever surface the vomit hits whether it is the carpet or a blanket. Then comes the laundry. It would often happen at night in bed multiple times as he was trying to go to sleep and washing him, changing him, pad and all bedding was exhausting. When the vomiting slowed down, it was an immense emotional relief and it has helped with disruptions at school as well. We are hopeful that it will continue to work well for him.
So Todd began to look for a boat and had been searching for almost a year. He had specifics in mind and wanted a good deal. A couple days before our wedding anniversary he had said to me that he just couldn’t find what he wanted and we might end up having to buy a boat next year, since he just hadn’t found anything within our price range, and as summer got closer, the prices would go up.
The morning after our 20th wedding anniversary, he was looking on Craigslist as he often does, and saw the perfect boat. Not too big but big enough for our family and a few friends, older, but in super condition. It was at a dealership, which was different from the others he’d been looking at but decided to give them a call and say he was interested. A salesman answered, Todd asked to put a deposit down and said he’d pick it up that afternoon. Since he had been looking for almost a year he knew what he wanted when he saw it and felt like it was a good deal.
That afternoon he went to the dealership, picked up the boat and the salesman said, “you know, you called at exactly the right time.” Apparently, they had put the boat online the night before and in the morning, as he was opening the door walking into the dealership, the phone had rung and he picked it up before he’d even set his briefcase down or turned on his computer. It was Todd and since he was offering the deposit, the man took his offer. However, when he went and sat down, opening his e-mails and checking his voicemail, he said he had about 25 e-mails and numerous voicemails. Apparently, Todd knew a good deal when he saw one. “You got lucky,” he grinned.
All of this, coupled with the fact that he found it on the day after our wedding anniversary made us feel like it was truly a surprise gift from God to us. We took it out a few times in the spring, and with the early heat this summer, have loved taking our kids and their friends out, towing them around on tubes. We’re hoping they can learn to waterski. I’ve gotten used tubes, skis and equipment off Craigslist, spent time studying for my boat card so I can drive it and we’re having so much fun on the water. We feel incredibly thankful for this gift.
We’re hoping to get Joseph out on the boat eventually, although he is going to have to get used to it. Last year, when we took him out on my uncle’s boat, and he sat on Todd’s lap, he watched with concern, as he saw the girls on the tube behind it screaming. We’re pretty sure at first he thought we were killing them by looking at his alarmed face. However, we assured him that they were laughing and when they got closer, they showed him they were smiling and happy he calmed down. We’re hoping he will be able to enjoy it as much as the other kids do, even if he doesn’t go in the water.
Something happened and seemed to shift in my soul during that week and afterward. It feels like we are in a new season. The last year and a half has been so difficult on so many levels, spiritually, emotionally, and physically, but things are starting to feel more normal. The last season has felt like a drama all the time. Like I’m underwater and keep trying to come up for air, only to be shoved down by some new health issue or hurdle with Joseph and Vivien.
But in the last couple of months, we have gotten into a routine with school and caregivers, we’ve gotten the medication right and things seem to be normalizing. It has felt like life is even-ing out and the sun is coming out a bit. Lucie and I went away for a little trip to Eastern Washington to hear my favorite speaker Lisa Bevere and it refreshed my soul deeply.
I know that summer will bring Joseph and Vivien home more and he may struggle with some boredom again, but he will have school to look forward to again in the fall and I am thankful.
Congratulations on reading all the way through to the end and have a wonderful summer!
