A Day trip to Maui and the Merrys do Covid

Have you ever taken a day trip to Hawaii?  We pretty much did….  Can’t say I recommend it.

Back in early 2020 I was thinking and dreaming about going to Hawaii for our 20th anniversary and wondering if it would be possible.  It was shortly after we’d adopted Joseph, life was looking rather confined and difficult.  I was hopeful that we might have caregivers by then.  I decided to go ahead and book early with our timeshare exchange and picked January of 2021.

In October of 2020 we took a 2 night trip sans kids for the first time in 6 years to Oregon and it went well!  We had always taken Vivien in the past and it was quite amazing to be kid free for the first time in a long time.

But we all know, January 2021 rolled around, deep in covid.  We did have caregivers by then, and a few people were taking trips to Hawaii with lots of restrictions but in late 2020 we decided to postpone our January trip  as it seemed like there were too many complications.

We rescheduled our Maui trip for December of 2021 and took a placeholder 20th anniversary trip to Utah which involved less restrictions and fewer days.  We had pages of notes for caregivers and family members who were taking care of the kids, but thankfully, we had a wonderful time and everything went smoothly.  My hopes were high and I was so glad it all worked out, looking at the future and realizing that actual getaways with the two of us worked!

So when the postponed trip to Hawaii rolled around, and the week before we left there were a few hiccups I wasn’t worried. There was a predicted storm but storm or no storm it was hawaii. There were a couple other small things.   I have noticed that before good things happen in our life, especially at the beginning of trips - there is always some sort of problem.  In 2013 when we went away (before Viv) I hurt my knee right before our trip.  In June of 2016 when Todd and I took an anniversary trip, SIlas had to have a bunch of stitches in his foot just a couple days before we left.  Both trips turned out just fine.  Even before this last October trip to Oregon, Todd and I had a difficult season together and were frustrated with each other right before we left- and the trip proved to be exactly what we needed to reconnect.

So this time, I was expecting something to happen that would make it seem like we wouldn’t be able to go but it would be just fine.   I’d been planning for months things for the kids to do with parents, caregivers, friends, and been in contact with Joseph and Vivien’s school.  The schedule and instructions were about 14 pages long.

The night before, I was feeling like we got off fairly easily as we hadn’t had many issues.  Joseph had gotten a cold the last week in November but it didn’t hit too hard.  We’d had him tested for covid and he was negative, so when Silas and then Iva came down with the cold, we just assumed they had caught it from Joseph and didn’t worry about it.  Our kids had had colds on and off all winter and we would usually get one or two of them tested to be safe each time.  

We knew several families that had gone through covid and though we are very careful for the Grandparents’ sake, I’ve never been super worried about the kids themselves or extra careful in that sense, as research has shown that covid is pretty mild in kids.  Most of the adults that were caring for them were vaccinated so I felt a little more assured for that reason.

However, the night before we left, we’d gotten an email from Silas’ co-op saying that one of the kids there had tested positive.  We’d gotten these before and it listed the class.  I didn’t recognize it or think much of it, but about 20 minutes before going out the door to the airport, Todd mentioned that the covid positive student was in one of Silas’s classes.

Thinking of his cold, I realized that we should probably get he and Iva to be tested to be safe, so I quickly scheduled an online drive through test like we’d done many times before and asked Maggie to take the older three.  I literally scheduled it a few minutes before we left for the airport. Joseph and Viv were already going to school.  Joseph had already had the cold and tested negative so I didn’t bother getting them tested.

However we decided to keep Iva and Lucie home from the grandparents that day just to be safe.   I did feel like it put a damper on the trip though, and throughout the plane ride, I felt some anxiety about it, trying to assure myself that SIlas had been in a classroom and they were all wearing masks, there weren’t close quarters and Joseph had just had a cold.  I was fully expecting a negative test and decided it was just another one of those things that happens at the beginning of the trip that scares us and that everything would be fine.

After arriving on Maui that evening, getting our car and food for the week and heading to our condo in Kihei, I kept checking my email to see if we’d gotten any results back.  There had been a storm there and the weather wasn’t great, but it was still Hawaii.  However, I felt like I was holding my breath until we got that test back.

Todd and I woke up early the next morning because of the time change and it was so nice to be able to have a relaxing morning and not worry about getting everyone ready.  Lucie did text to ask about something as they got Joseph ready for school, but it was a restful morning.  Still, I kept checking my email.

Finally it appeared.  I had to download the test and as I opened it, I was fully expecting to see “negative” breathe a sigh of relief and enjoy the rest of our trip.

When I saw the word “positive” my heart sank and I immediately felt nauseous.  Silas and Iva were both positive and Lucie was negative.  Maggie had already had covid, but after seeing the positive, I knew we’d need to get her tested also.  I wasn't at all worried about the kids getting deathly sick. As I said before all the research showed that kids usually do fine. But I knew that if we had to take Joseph and Vivien out of school for the whole time we would pretty much have to come home.  And of course I didn't want my mom getting sick.

As I said most of the adults caring for our kids were vaccinated but immediately we had to figure out a new strategy if there was any chance of us staying.  I spent the next 5 hours working out alternative plans, thinking about where Joseph and Vivien would sleep, talking to Silas and Iva about isolating and having the other kids bring them their meals.  We’d stocked the freezer before we left and had lots of help but we weren’t expecting covid!

We would have to pull Joseph and Vivien out of school until they were tested and got results back and we had sort of worked it out to where Lucie could help care for them some and the caregivers could help care for them.  Mom and the kids were telling us not to come home and saying they could handle everything but we weren’t so sure.  I was communicating with the school and trying to get everything laid out.

Finally in the late afternoon, I put my computer and phone aside (but not off!) and we took a walk along the stunning beachside path in Wailea.  It was our only venture out of our condo, and despite walking one of the most gorgeous paths in the world, alongside the most beautiful beaches and expensive hotels (we were staying in Kihei not in Wailea), I could only feel anxiety and the sinking feeling in my stomach wouldn’t go away.

I was praying a lot.  There were a lot of whys.  There was also a feeling of shame that I was having a hard time shaking, wondering if we were too hasty and taking this trip or if we were selfish.  It didn’t look like there was a way out.  I was worried for the kids and my mom.  I didn’t want to go home after all the planning, work and expense, but it also felt terrible to stay.  We were face timing a lot with kids and Iva especially.  She was getting to rest and watch movies, which she enjoys but it wasn’t looking good for us staying.

When Vivien’s caregiver Rhiana told us she’d vomited at school I felt even worse.  Vomiting occasionally happens with her g-tube so it was a normal behavior for her but it is also sometimes her first sign her body shows of getting sick.  I knew if it happened once it could be a fluke.  But if it happened twice, it could be a sign she was getting sick.  And if Joseph and Vivien got covid, we would definitely need to come home.  As I mentioned before, I wasn’t worried about them being deathly sick as all the science shows that covid is mild in kids.  But if they couldn’t be in school, there were definitely not enough caregiving hours to make it work.

As I was praying I was struggling with God a bit.  Covid has been here for 2 years.  Before we left I’d been saying I’d been amazed that we hadn’t gotten it yet.  I was expecting that at some point it would go through our family.  Why now?  Why AFTER we left?  If it had arrived a week earlier, we could have postponed, not gotten on the plane and at least saved some of the expense and trouble.  If it had arrived a week later we could have almost finished out our whole trip.  It did seem like this was very pointedly something God was in control of.  

It was interesting because a few weeks before I’d read some of his promises God had given Todd and I at the beginning of our marriage. They were from Scripture and are beautiful and good. One of the admonitions that came with the promise was that after receiving “good things” from the Lord, not to turn to idols.  I was asking him if Hawaii and vacations were too much of an idol in my life a couple of weeks ago.

Todd and I talked everything through on our walk and agreed that God would make it clear if we needed to go home although it was appearing like we would.  We asked for a clear sign to know and we would just wait a bit longer to see what would happen.  We ate dinner at the condo and as the sun set, walked across the street to the beach and sat together, watching a gorgeous Maui sunset over the water.  I took pictures and a few smiling selfies with Todd that belied how I was feeling inside.

As we sat there, I was still feeling nauseated, anxious and sad.  I couldn’t help but think about the idea that I could be sitting in one of the most beautiful places in the world, in the most lovely circumstances, after eating a delicious with my husband - and have NO PEACE.  And yet there are other times, when circumstances are horrible and difficult and God gives GREAT PEACE.

Circumstances do not dictate peace.  Only God can give that.   I definitely didn’t have it.  I was trying to talk myself into hope but it wasn’t happening.  As we were sitting there I got a phone call from Lucie saying that Vivien had vomited again - pretty much her whole feed.  We came back to the condo and decided to see how things were in the morning but knew things weren’t looking good.

The whole time we were there though, Todd was amazing.  He had this assurance about him and inner rest. He was so loving and sweet to me and he had this sense of enjoyment for the moment.  He said if we were going to go home, it would be clear and we could trust God and just enjoy where we were at and the time we had.  He was super kind and though I was not able to be as at peace as he was, I felt like we connected really well and deeply, despite the time that was to be short.

When we fell asleep that night, I didn’t silence the phone just in case.  At 2:00 am I was awakened by the buzz of the phone.  It was my mom.  She explained that she was doing ok, but she was  headed into the hospital with the paramedics because she was having some chest pain.  She said the kids were asleep.  Maggie was there and we weren’t worried about them being alone but were concerned for my mom.  Todd got on the phone with one of the paramedics he knew well and got the details.  Her heart had been beating too rapidly (a-fib) and they’d stabilized it but needed her to go in for tests and observation.  She was doing fine, and cheerful.  Todd said that the paramedic told him that in all the years he has worked, he had never met a nicer patient.  Of course.  It’s my mother! 

After we hung up, we looked at each other.  This was definitely our sign to come home.  Talk about another dramatic twist.  We were not expecting this.  I believed my mom would be ok but it was time to go home.  At around 3:00am after the phone call I scoured Expedia for tickets and we found some relatively cheap ones, leaving at around 10:45am

It was still 3:30 am and despite my sorrowing heart and anxiousness about the kids we did sleep fitfully for a couple of hours.  I dreamed that we were leaving, and in my dream I was sobbing and sobbing.

In reality, I knew that leaving Hawaii was a first world problem.  I have so much to be thankful for and grateful for.  Maybe I’d been asking too much to even go.  But it was still painful, and again, felt a little shameful as if I’d done something wrong.  I knew shame wasn’t from God, but but it was still difficult to shake.  As we packed the next morning, I kept tearing up. We bought some good food for the week and and tried to pack a lot of it into our suitcase  Todd joked we should try to eat the all the good stuff before we left but I didn't feel like eating anything. 

As we drove away, I felt a mixture of anger, shame and sadness.  We returned the car and sat in the airport checking in with the kids and writing.  I knew I would be glad to see them and care for them, but I still kept struggling with God.  I wanted to know what He was doing and I did feel like he was possibly revealing my idols.

However I wanted to trust him also.  Somehow when we arrived home, I felt so much better just being with the kids and finding peace again.  We’d done what we needed to do.  As I’ve mentioned before, I love caring for my kids when they are sick.  I loved hugging Iva especially since I’d been the most worried about her isolating, and it was good to see all of them and be home with them.

It felt like we came home and everything was fine.  My mom was back from the hospital after being there for several hours, and after tests were run, she had almost no issues, other than a couple medications to take.  Both Silas and Iva were doing better physically.  Vivien was still struggling with some vomiting and though she hadn’t slept well the night before the night we got home she slept through the night like a dream.  The next day everything seemed fine and a bit surreal that we were home and that we’d been on our day-trip to Hawaii the day before.

Over the next couple weeks, everyone got covid except Maggie, my mom and I.  Maggie had had it this summer.  I tested 3 times and was negative every time.  I kept up my jogging, my water and my vitamins.   Mom had bought D, C and Zinc for the kids in great supply.  It hit Todd and Lucie like colds.  Joseph didn’t have any symptoms until almost a week after he and Vivien tested positive.  Thankfully both of them had fevers for a couple of days, and slight coughs for a couple of days, but other than that, they did just fine.  They’d had a much worse cold a couple months earlier.  Overall it was a fairly mild covid run.  The research that showed that kids did fairly well with it proved to be true.  The biggest loss for them was the fun things that I had planned for them with their friends and Grandparents while we were gone.  It was especially hard on my social Lucie girl, to be home doing nothing for a couple of weeks

Vivien’s caregiver Rihana tested positive, and definitely had symptoms and spent some days at home.  I know this was especially difficult for her because her mother had passed away from covid just a few months before in Africa.  My heart went out to her.  I visited her at her home, bringing her a meal and making sure she had everything she needed. Joseph’s caregiver Alimata tested negative thankfully.

After we got home my mom stayed at her house and away from the kids.  Though she’d been in close contact with all of them except Iva and Silas (because of their colds), she tested negative twice and did just fine as well.  

We did enjoy our time at home with the kids, just being together as a family.  Todd of course was off work the whole time and we had a meal together every night, worked on projects and Christmas things during the day, often spending evenings watching movies or resting all together.  We were just finishing moving Joseph and Vivien downstairs and redoing an entire room for them so it helped to be able to get that all done and organized. It actually ended up being a really special time for the family.  And as long as I wasn’t reminded of where I could have been, emotionally I was fine.  I would occasionally remember and wince but overall, I was thankful for the peace God gave me once I was home with the kids.

In addition to this, much of our trip was surprisingly refunded, including all our timeshare credits, (even the two nights we stayed!) and aeven our “nonrefundable” car rental other than the two days we were there.  Even the surprise return airline ticket we had to buy, was given back in airline credits because right before we left, they asked for volunteers to fly out an hour later so we did.  We received credit for future airfare, in an amount well over what we’d paid for the tickets.  We were also able to get credits for our other return tickets we didn’t use.   I felt God’s kindness in this way, although I wondered how we were going to use all of these.  I wasn’t sure what future vacationing would look like, although Todd and I can and have traveled with the kids separately.

I do want to learn from this and I am asking him what  it looks like to go away in the future.  We were supposed to take the kids to Hawaii, two at a time this coming April with the others at home helping with Joseph and Vivien and the caregivers.  Now we’re not sure about this or how it will work or if it will even happen at all.  We want to be extra careful with my mom.  But we also know that earlier this year we were gone for 6 nights and everything was fine.  We don’t want to overreact and just assume we can never go away again.

But I want to be sensitive to God about what the future looks like.  I want to listen to Him, keep my heart in check about what is important.  There are so many things more important than vacation.    I know we will go to Hawaii again someday.  But as we’ve been reminded over and over, when you have special needs kids, life is different and there are limitations we have that others don’t.  This is hard on us, and it’s hard on them.  I don’t think it’s hard on Vivien, but I know that Joseph is aware of his limitations.  The other kids are aware of how it affects them at times, having so much of our time and attention often given to Joseph and Vivien, despite our trying to keep a balanced focus.  

I also know that just the fact that I’ve gotten to go to Hawaii several times in my life is a huge blessing.  I have so much to be thankful for and grateful for both in earthly wealth as well as in spiritual, emotional and familial blessings.  And though the sense of loss feels real, I also know that my “loss” because of covid is ridiculously small in comparison to those who have lost loved ones and friends.  We have been relatively minorly affected by covid and I don’t take this for granted.  

I am continuing to pray that I will learn lessons from this “day trip to Hawaii” and trust God for what the future holds with thankfulness and hope.

Merry Christmas 2021!

Merry Christmas

from the Merry Family

We hope this letter finds you and your loved ones healthy and well. As we write this, we are thankful for God’s many blessings and rejoice in His goodness. In a year of challenges and struggles, we are reminded of Christ taking on the pain and suffering of mankind and becoming one of us….

“And the Word became flesh and dwelt among us, and we have seen his glory, glory as of the only Son from the Father, full of grace and truth” John 1:14.

Like all of us, 2021 has been a year of mountains and valleys. God’s grace has been with us in the valleys and we are thankful for the mountaintop joys as well. We pray you find His grace strong and comforting in these times.

It has also been a year of firsts. Maggie got her first office job, her license and is going to college at running start. Lucie and Iva had their first airplane ride ever at ages 9 and 11 to go to Disneyland. Joseph attended school in person for the first time ever and loves it. Although Todd was a firefighter for 11 years, Todd also got his first 10 year pin this year as a paramedic. Silas is the first of all the kids to experience hitting (almost) 6 feet tall. (Time will tell if he is the last.) Vivien and Molly had no firsts that we can think of, though Molly is considering her first pair of reading glasses as she is experiencing the trombone arm effect when she tries to read in low light, so maybe that counts.

Here’s an update on our clan, starting with the youngest…

Vivien (7 years old) continues to be a bright light and joy in our family. She is now in the first grade and takes the bus with Joseph every day. Her teachers and aides are so kind and loving. We are grateful for her caregivers who help out so much at home and really do have an affection for Viv. Over this past year, Vivien has finally put on some weight and grows stronger every day. She loves to give out smiles and giggles for anyone who brings her a balloon. Vivien was recently granted a “Make-A-Wish” grant for a bedroom remodel. We are in the process of changing our downstairs office into a full bedroom with a kitchenette for both Vivien and Joseph. It will be so nice to have them both downstairs!

Joseph (8 years old) has gotten so much taller this past year! As we mentioned before he attended school in person for the first time in his life this year. He loves school! He has already moved into his second wheelchair since becoming part of our family in December of 2019. Joseph is truly a happy guy and loves to be in the center of any social event. He loves to cuddle on the couch with one of the siblings or is just content hanging out with the family. We are thankful for our caregivers for Joseph as well. Seattle Children’s has been a huge blessing in providing an eye-gaze device which we will receive soon will be a huge help in communication. We celebrated his 8th birthday and Vivien’s 7th with a combined birthday party and fundraiser for Home of Hope and he charmed the around 80 or so people who showed up and generously gave.

Iva (9 years old) is our easy-going, quiet homebody who gets along with everyone. Both Iva and Lucie love to curl up on the couch with a good book. Iva loves crafting with anything she can find. If you see scissors, paper and glue somewhere in our house, you know Iva has been in the area! Currently, Iva and Lucie are practicing their skills with concrete candle holders with Todd. Both Lucie and Iva enjoyed a fun trip to Disneyland with Molly and friends last month. Iva is enjoying piano and is getting good advice from Silas on how to play by ear.

Lucie (11 years old) has a tender heart, especially for Vivien and Joseph. She is our consistent babysitter and loves caring for them. Our tall girl has also been helping others with babysitting, which she loves! This is Lucie’s first year in Logic at HIS Ministry Co-op and she has been so diligent with her schoolwork. Lucie loves to make lists for herself, then check off her completed tasks as the day goes on. She loves to organize and tidy things up as she goes. She has especially enjoyed the Mandie books over this past year. Fortunately for her, there are 47 books in the Mandie series.

Silas (14 years old) has recently gotten into cryptocurrencies. He has always had a bent toward investments and making his money grow. It has been exciting to see him getting so excited about this area! He is currently at Heritage Co-op and takes a speech class as well. Public speaking is his favorite class topic and he recently gave a message on the Cancel Culture movement to the middle school students at Highlands Community Church. He and Maggie went on a pro-life Justice Ride earlier this year with Created Equal, persuading people to love mamas and babies in the womb well. Just a few weeks ago, Silas was asked to join the high school worship band at church! He is looking forward to this and has a gift when it comes to piano and he is eager to share it with others.

Maggie (17 years old) is now a Running Start student at Bellevue College! It was hard to say goodbye to so many good friends she grew up with at His Ministry Co-op in June. After graduating from the Rhetoric program, Maggie went to Ohio to serve as an intern for Created Equal – a pro-life ministry in Ohio. This was a great opportunity for her and at the same time, so hard for us to let her go for that long! Now that Maggie has her driver’s license, she loves to keep a busy social schedule with her many friends. She also got her first office job with Backflows Northwest and loves her new friends there and is thriving.

Molly is still enjoying family and friends, jogging at Gene Coulon Park three days a week, and writing and speaking when she can. She is looking forward to speaking to the moms group at church in January. She finished a book about VIvien and is currently writing about Joseph. Her goal is 30 minutes every morning but it usually ends up being just a few days a week. She has also started serving as a discipleship leader for the freshmen girls at church and is enjoying getting to know the sweet girls better at d-groups. Last but not least, she loves to do her favorite thing - travel - as much as is humanly possible with a family of 8 on a budget. Whether it is planning a big 20th anniversary trip with Todd, or doing a short one or two night trip with just a couple of kids, she loves to squeeze in as much family time away as she can.

Todd has been enjoying some projects around the house. Most recently, the bedroom remodel for Vivien and Joseph has been his main focus. These creative projects have been a great outlet for him. He continues to serve on the board at Home of Hope Ministries and at H.I.S. co-op. He is involved with teaching at co-op and is doing two Units this year, complete with exploring sheep guts and dissecting eyeballs and brains with the kids. He loves his job with King County Medic One and is thankful for the great people he works with 10 years in. This year he and Molly celebrated 20 years! How time has flown by!

Thank you for taking the time to “catch up” with us. We love getting your letters and hearing updates from you all.

Blessings to your family,

The Merrys

Winter, Spring, School, Meds, Vacations and a Boat!

I know I always say I have been remiss in updating this blog, but I think this just might be the longest I've gone between posts. I believe that October 2020 was the last time I posted, other than our Christmas letter and pictures and now we are almost to July 2021. It's a bit of a long post so you can practice your skim reading. If you make it to the end, congratulations are in order.

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.

As covid shut down much of the world, thankfully the wonderful caregivers continued to come.  Our other kids also did co-op over zoom instead of in real life and though they missed their friends, they did their best with what they had. They had a couple of in-person, outdoor gatherings with masks, one of them at Pioneer Farms and were happy for this at least.

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.

As we moved toward the first day of school, there was an all out war between the teachers union and the district, with some teachers (though not all) not wanting to go back to work. I was asked to write a letter that could be read as a testimony of the need for students to return to school if there was a lawsuit, which I wrote in the most compelling, persuasive way I could.  Two days before school started we received notice that the students would not be returning to school because of negotiations, but the night before we were slated for the bus to pick up Joseph and Vivien, we received communication that school would start after all.  It was definitely a cliffhanger.

The next day the bus came and Joseph, with much enthusiasm, was loaded onto the bus.  Vivien took it all in stride, without being phased as their wheelchairs were strapped in and the day began.  I was a little worried about how Joseph would react but I said goodbye with smiles and excitement and he seemed fine.  The plan was for me to follow them to school, and though I was not allowed in the classroom, they set me up in the library with my laptop and phone so that I could be on call if they needed anything.  I greeted Joseph as they got off the bus so he knew I was nearby and he was all smiles as he was wheeled into school.

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.

I love their teacher and as I got to know her a little over the months of zoom, I was so impressed with her strength, her love for the kids and her knowledge of how to communicate with them and help them learn.  

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.

In late March, with Joseph and Vivien in school, the girls and my mom, and I were able to take a vacation to Oregon and Northern CA.  It was amazing to sleep without interruption and enjoy a road trip and just be together.  Todd and Silas enjoyed a quieter week at home and with the littles in school and the caregivers they were happy as clams.

Also in March, we had another fun semi-surprise.  WIth our kids getting into their teen years and working hard on school, we wanted a fun outlet for them and had been thinking for a long time about buying a boat. My uncle has a powerboat and every summer he would do a “boat day”.  It was something our kids looked forward to every year.  Todd especially felt like it would be a great thing to do where we could be generous with their friends and enjoy family time together.

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.

In addition to this, we had saved much of our first stimulus check and a few days after we got the boat, we got another large stimulus check.  This is a time in history when having a large family is profitable, at least when it comes to stimulus checks.  My large family groups on Facebook are all rejoicing. :-)  After receiving the checks we realized that most of the boat was going to be completely paid for.  We know nothing is free and while we were thankful for the checks, Todd joked that we should name the boat, “paid for by our grandchildren”.  However, we were very thankful.

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.

In mid-April Todd and I were able to get away for a full week to celebrate our 20th wedding anniversary.  We had had a trip to Hawaii planned in January but covid derailed those plans and we rescheduled for December.  Instead we went to St. George, Utah and enjoyed Zion and Bryce parks.  It took a ton of planning and a ton of people to make it happen.  Rihana, Melat and Alimata, our caregivers were wonderful and would take care of Joseph and Viv from after school until bedtime. My mom came and stayed over each night.  All the grandparents as well as some friends checked in on or took Maggie, Silas, Lucie and Iva at different times on fun excursions during the week.  The kids took turns getting Joseph and Vivien off to school in the mornings, which was no small feat.

For Todd and I, it was truly like a second honeymoon.  We got more sleep and rest than we'd gotten in months, despite hikinging every day except Wednesday, when we took a break. We talked deeply and enjoyed only having to focus on each other, instead of having so many other people's needs to meet.  We have always said that we would do just fine together on a desert island.  The times that we struggle in marriage usually have to do with our opposite perspectives in how to do relationships with others at times or just having so many other things to take care of that we forget to focus on the other.  This was a beautiful time of truly enjoying each other.

The hiking was incredible. Angel's Landing has been my dream hike for a long time and it was absolutely spectacular, despite being a bit crowded.  Zion and Bryce were gorgeous and we were also able to visit Todd's step-Grandma Rosa.  We visited a couple times while we were there and she beamed and told us stories of her life with Todd's Grandpa Verl.  She was thrilled to see us and we loved listening to her stories, asking questions, and looking at old pictures.

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.

We have had some big changes with Maggie graduating from co-op and moving on to running start in the fall and Silas also moving from our previous co-op to another one as well.  However, we have lots to look forward to and as I look on this past year and a half, I can't help but be amazed at how far Joseph has come, how far we have come and how our family has grown both physically in size, but also spiritually and emotionally as well. I'm proud of all my kids and thankful for my relationship with Todd.  I am looking forward to what is ahead and I know that God will continue to lead and guide us.

Congratulations on reading all the way through to the end and have a wonderful summer!