Fall, a Genuine Vacation and a Scare

September brought school which was decidedly different this year with covid. The oldest four returned to homeschooling with our classical co-op with Lucie and Iva on zoom and Maggie and Silas in person since their Rhetoric class is small.  The oldest have a heavy load of schoolwork but they are doing well with the challenge. Lucie and Iva did have a few fun outdoor events where they connected with their classmates.

School also has begun over zoom for Joseph and Vivien.  To say zoom school is not ideal is an understatement.  If I were a person who swears, that first day would have definitely brought it out in me.  Figuring out links and technical issues alone was frustrating.  Vivien doesn’t relate at all to screens.  They mean nothing to her since she cannot see well.  We were so looking forward to in-person school for Joseph as he needs more stimulation and loves new experiences.  Despite lots of siblings and trying to keep his mind and body busy he does get bored which translates into frustration for him.  Because of his lack of ability to move intentionally or even physically play with toys, it is hard to entertain him all the time and we don’t want to fall back on screens too much.

We originally expected that school would bring some relief in the area of time.   Zoom school did the opposite of giving more time to my already overwhelmed state.  Because Joseph and Vivien are both completely dependent, someone needs to be in front of the screen moving the mouse, helping them count or clap or coloring hand over hand etc.  The other kids could help but they were also busy with school and the time it took was a huge source of stress and frustration.

Thankfully from a standpoint of learning, Joseph loves school, even over zoom.  I have been impressed with his teacher and how she is doing her best to make schoolwork, despite the medium.  He likes screens and interacting with people over them.  He gets tired of sitting by the end, but overall his mind is active and he is most attentive and able to learn.  For Vivien, she could care less.  It is what it is and we are doing our best to do what we can for her.

God was good to us however when it came to timing.  Shortly after school started, we were finally able to get caregivers through DDA (Developmental Disabilities Administration) for Joseph after trying for months. I probably would have had to pull him and Vivien out of school if this had not been the case simply because of time constraints.  Even without zoom school, having two kids with special needs feels all-consuming and on occasion, neglectful of our other children so I was thankful to God for these caregivers. DDA contracts through agencies and so far, every person who has been sent by an agency has been originally from Africa.  Joseph gets to be cared for by women of color that have similar customs, mannerisms, and even accents to what he is familiar with at Home of Hope with the many “nannies” there..  Rihana has been with Vivien for a couple of years now, and she is wonderful with her.  She is from Ethiopia and has been in the US for about 8 years and we love her.

One of the new caregivers for Joseph has been in the US since January, one month short of Joseph’s time here. She is in her early twenties, studying to become a nurse, and loves to tease Joseph and help him laugh.  The other is a sweet young grandmother who has been here longer but English is a bit more of a struggle for her.  Though sometimes communication can be difficult, we manage, and we are so thankful for them. They all have a Muslim background.  Their hours vary and one actually cares for both Vivien and Joseph which brings flexibility.

We also recently switched from driving Joseph and Vivien back and forth to therapies to in-home therapy.  It has been a huge help not to haul wheelchairs and kids into the car several times a week and the therapists are wonderful.

Fall brought both Vivien and Joseph's birthday. Vivien turned six in September and Joseph turned 7 in October. While there was no big party because of covid we had nice family birthdays and a trip to the zoo. Joseph also came trunk or treat at our church and enjoyed fall festival candy for the first time at the end of October. He loves new experiences and his eyes were wide at all the costumes and decorations. One of our caregivers joined us for some of the time

While having these caregivers and therapists in our home is a huge answer to prayer and a great help, the transition has been difficult to say the least.  As you may remember, right after we adopted Joseph I struggled again with insomnia, which made caring for him physically and emotionally stressful.  The arrival of coronavirus and the ceasing of so many other activities bought relief and by summer, I was sleeping much better. 

However, this fall I had a bit of a relapse in insomnia as my stress levels mounted.  it is frustrating to me that stress triggers the very thing that actually causes more anxiety. Lack of sleep brings on more stress! Several things turned on the pressure.  First, training the caregivers was more time consuming than taking care of Joseph and Vivien myself.  Once they were trained it got easier, but we also had to go through a few caregivers. One came once and never came back (I think she was overwhelmed with the work, which I understand) and the other wanted to care for him but wasn’t strong enough physically to move him. 

The second stressful component was zoom school as I mentioned before.  Third, as the therapies began, communicating transitional information to the therapists to help them get to know Joseph and Vivien also took time.  School therapy over zoom meant someone had to be present the whole session, physically moving and working as the therapist's direct.  It isn’t incredibly effective although the therapists are doing their best through the medium they have been given and I’m sure if they were working with them in person we would see more results.  They are wonderful people and we're looking forward to the point where we can meet them in person and it can be a little more effective. The in-home therapies have been much more constructive and also easier on us.  In counting them all up, between sessions over zoom and in-home therapies, there are 14 sessions a week including OT, PT and speech, which feel a little crazy at times.

Lastly, in late summer and early September, Vivien was struggling with vomiting.  It increased to once or even twice in a day.  Rihana helped when she was here, but when she wasn’t, the rather dramatic interruption and then time spent cleaning was frustrating, to say the least.  Our laundry load also increased and to top things off, our dryer quit working.  Thankfully Grandma Merry is close by and could help with our loads.  Also thankfully, Vivien isn’t bothered by vomiting.  She is emotionally unaffected by it, other than afterward looking around and giving us a big smile because she feels better.  It’s no big deal and par for the course for her as she is used to it.  She does have an early warning system and we know the signs but don’t always catch it

As I started to struggle with sleep I realized that we needed to establish patterns that would work for us.  I’ve always taken a rest day once a week and since we adopted, it has been much harder to make it happen.  Through the insomnia, God reminded me of this and I needed to be intentional about Sabbathing.  Eventually, I rescheduled everything so that we have one day a week with no therapies which is healthy for all of us. I don't schedule any events that day and the younger girls to go my mom's for the day.

With the sleep and anxiety issues, one of the things I had to work through emotionally was the catch 22 of caring for Joseph and Vivien and having people in our home.  As I mentioned before, we are incredibly grateful for all of the therapists and caregivers, but in the beginning, having so many people every day to oversee felt incredibly uncomfortable and exhausting.  Home didn’t feel like a place of rest.  But if they were not here, there was the hard work of caring for Joseph and Vivien which, at this point, is all-consuming of my time.  Todd has been focusing on school for the other kids and my focus has been the youngest two.  Even in writing this, I feel the need to clarify that we are grateful and thankful and that all those who come are wonderful people who do their jobs well, and truly care for us and our children.  But it has been a difficult transition emotionally.  We have had to lean on God’s grace to move into this new normal.  God reminded me that transitions are hard but it wouldn’t always feel as stressful as it did those first few weeks.

He was right of course.  Even as I write this in mid-November, I am sleeping fairly well. We have settled into more of a routine, though scheduling three caregivers, as well as the therapists, is quite a feat.  I am feeling more comfortable with having people in our home most of the day.  I feel like I went from completely overwhelmed to busy but not stressed out of my mind. Life with 6 kids at home, 3 caregivers, 3 therapists in and out is fast-paced at times, and there is still not a ton of down time, but it feels manageable instead of out of control.

We did a lot of troubleshooting with Vivien, changing food and meds, to try to figure out the vomiting.  I went to online forums on Facebook to ask others with kids with T-18.  As a result, we found a medication that has improved her tummy immensely, reduced the frequency and as a bonus, she is gaining weight.

As an added blessing, having caregivers enabled Todd and I to do something that we haven’t done for 6 years.  We had a getaway sans kids for 3 nights!  Next March we will be celebrating our 20th anniversary.  We booked a longer anniversary trip next year but, with all the things that could happen, we realized that flying out for a full week probably wouldn’t be the wisest way to transition with our brood.  We decided to do a small trip this fall.  We chose Oregon, knowing we could drive back in an emergency and booked 4 nights, which turned into 3 so that we could have a trial run before being gone for a full week next year.

We had help.  We received more care hours, both for Vivien and Joseph. A friend of ours from church who has done respite care and fostering offered to come at night and stay with our kids.  During the day the caregivers were here for the youngest two and the older kids went to Grandparents' or friends' houses.  In the mornings and evenings, the oldest three did all the work for Joseph and Vivien, putting them to bed, getting them up, and doing meds.  To our shock and awe - everything worked out!

We almost canceled the trip near the beginning of the month, and even right before leaving because things felt so busy.  Joseph was on the tail end of working with rehab doctors and reducing a medication he has been on since he was three and I was worried about how it would affect him as it can make him agitated in his body and anxious.  The day we left as we got in the car and drove our first few miles, I felt a heavy sense of gloom, wondering if I could even enjoy this time away, thinking about how difficult it could be for Joseph.  We explained to him as best we could what was happening, but I knew he didn’t fully understand.  I wasn’t too worried about Vivien as she is happy with whoever is caring for her and I knew the older kids would do ok.

We have cameras in every room in the house except the bedrooms and the therapists and caregivers can talk to us through them if necessary. I kept checking them to see how he was doing.  Joseph had so much agitation in the days previous as he was going off the medication. An hour or two out, I checked the camera and turned on the sound.  As I did, I felt like God gave me a gift.  I heard the speech therapist say cheerfully to Joseph, “You seem so much calmer and happier today than you were on Saturday.  I am so glad that you are feeling better.”  It brought ease and relief to my mind knowing that he was doing well and it reminded me of Gideon in the Bible, eavesdropping and getting encouragement at the Midianite camp.

The story goes that the Israelites were being oppressed by Midian (Judges 6) and the war was imminent.  The day before battle, the leader, Gideon, snuck into the Midianite camp and overheard two soldiers’ conversation.  One of them had had a prophetic dream, revealing that the Israelites would win the battle and throw off their oppressors.  Even if Gideon hadn’t overheard that conversation that battle still would have been won.  God didn’t have to give him extra encouragement, but He chose to and it gave Gideon the strength to move forward in what God had asked Him to do.  I felt like hearing those words from the therapist was so encouraging and helped me to relax and unplug a little, turning my focus to Todd, which was the reason we were going away.

God proved right in His encouragement to me, and it was one of the most refreshing, relaxing, fun and freeing times that Todd and I have had in a long time.  We enjoyed the drive to Bend, talking and listening to enneagram podcasts and discussing our personalities and those we love.  As we arrived it was almost surreal that unloading the car only took about 5 minutes and we could walk right in without bringing pumps, wheelchairs and mounds of luggage.  We stayed up late, (for us), slept in, and felt like kids again. 

As I’ve mentioned before, going somewhere with the kids is not a vacation.  We call it a trip.  Trips are still fun, but not vacations.  This was a genuine vacation!  We spent two full days hiking at Smith Rock State Park which is one of the most gorgeous places I have ever explored.  The weather was cool, sunny and perfect. We hiked all day and then rested all evening.  Relaxing, talking, and finishing our sentences without interruption felt surreal.  The kids called us in the evenings and reported on their days.  Though I’d check in on the cameras to see how Vivien and Joseph were doing fairly often, I found myself checking less and less as I saw that they all seemed to be doing well.  Todd and I connected well and were refreshed, emotionally, physically and spiritually, feeling so grateful to God for our time.

We had a bit of a scare the day after we got back.  As Joseph was coming off his medication a doctor recommended a new one to help calm him and we’d started a few weeks earlier.  The first time I’d used the new medicine he seemed more agitated so I stopped it, but after encouragement from another doctor, and not wanting him to be uncomfortable, I began it again thinking maybe he’d just had a bad day. He seemed incredibly agitated, almost to the point of distress. We thought it was the tapering off of the first medication.  There were even a couple days when he got increasingly unsettled and then all of a sudden, he started exhibiting what Todd said looked like seizure activity.  So during our trip, I’d called the doctor and asked if we could increase the dose of the new medication that was supposed to help calm his agitation and reduce the discomfort.

The day after we got back, as I was jogging I was listening to Lisa Bevere of course, and she said,  "It's time to embrace the risk of living your life. Yes daughter, heal for a season if you've been wounded, fight for forgiveness if you've been wronged, rest by all means to recover your strength.  A temporary retreat to assess your position is okay, but withdrawing is not an option.  A lot of people forget that it's impossible to be a hero without a battle." I was thankful I was for the “rest and temporary retreat” I had experienced and felt ready to continue in the battle of life.  

Let me tell you I needed that reminder.  Re-entry the day after the trip was rough on so many levels.  The kids were struggling with bad attitudes (even the ones who hardly ever have an attitude), I was tired and it was a crazy day. As we increased the medication that was supposed to calm Joseph, he seemed so unsettled.  I was home all day except for one errand and during that errand, Joseph had what appeared to be a more serious seizure.  Fetura and Lucie were there taking care of him and couldn’t get him to respond.  Afterward, Lucie held him and he immediately fell asleep.  He had had such a difficult day with so much agitation, and it was clear he was struggling emotionally, and at the end of his rope.  I went to bed frustrated and worried about how to help him, but wondered if it might possibly be the new medication and decided to discontinue it the next day.

As I went to bed I thought about the word of encouragement that morning.  I felt ready to fight "for" those I love in this battle of life” before the day started, but I was definitely not feeling it by evening.  Discouraged and wiped out were more accurate descriptions of my emotions.   But as God reminded me of what was spoke I thought of the verse, "How good is a timely word".  He gave me encouragement even when I didn’t know how much I would need it.

The next day we held off on the medication.  Joseph was a different person!  I felt like crying with relief.  He was calmer, happy and able to sit for long periods of time. He slept well through the night which hadn’t happened since we’d begun the new medication.  I realized that we were attributing his nervousness and agitation to the discontinuation of the first medication, instead of understanding the real cause was a reaction to the new medication   We were incredibly thankful that we’d discovered the cause and that the remedy was so easy.  Since discontinuing he has been better both physically and emotionally.

In the last week or so, I have been feeling a strong impetus from God to ask for healing for him.  We have obviously prayed for it before, but I have felt like He is reminding me to ask and petition.  I don’t have the faith to pray that his CP will disappear although I know I can ask this.  But I do believe that God wants us to ask for improvements in his body, in his abilities, in strength, and mental clarity.  He is driven to learn and his body prevents him from doing what his mind wants to do.  I felt like even figuring out this medication was a small answer to a prayer I will keep praying.

As we look ahead we are trusting God to give us new insights into both Vivien and Joseph, as well as the rest of our kids.  We are thankful for the caregivers, who have been giving us time to focus on the older four. We are thankful for the medication for Vivien which is reducing her vomiting.  We’re thankful for the ability to figure out what to do to help Joseph.  We’re thankful for the health and lack of sickness this fall.  We’re thankful for our time away.  We are trusting God to continue to give us grace and strength in what lies ahead and know He will guide and direct us!