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!

New Firsts for Joseph and Racism - Summer 2020

Summer found us venturing outside, after spending most of the spring wondering with everyone else, what exactly was going to happen with this coronavirus and quarantine.  We began to have a little more contact with people and took a few trips, despite the coronavirus.  While I know that it has affected so many people in very difficult ways from health to finances, it does, at least at this point, feel like it has inconvenienced us, but not much more than that.  We are thankful.  I don’t personally know anyone here in WA who has had it, although I’ve had a few online acquaintances in other parts of the country and friends of fiends who have experienced it.  For us, as I mentioned in an earlier post, it has slowed down our life a little which has actually been helpful.

We spent our summer doing as many outdoor things as possible and we did fit in trips in with the Grandparents, who, after a few months of not seeing their grandkids decided it was worth the risk.  Joseph had so many firsts, usually having to do with water.  First vacation (Idaho), first time going swimming in a pool (Seaside), first time going swimming in a lake (Maggie Lake) and the first time with his feet in the ocean (Seaside), first ride in a power boat (Hicks Lake) first (and last) time camping all of which he loved so much.  He also met some of his cousins for the first time, both on the East and West side of the state. 

At Seaside he was he was googly eyed and open mouthed as we put his feet in the ocean for the first time and a wave would approach. He would dance with anticipation.  He loved the cold water on his feet and laughed and splashed.  It was a huge production to even get him out to the water as we obtained a rental type beach wheelchair, walked it to the beach, got him all ready and then out to the beach.  Afterwards we had to bring him back to the hotel room, clean him up and  return the wheelchair.  Needless to say it only happened a couple of times but he did love it.  The only way for him to wade was to hold him under the arms, semi-hanging, semi-standing up.  This got tiring for the holder.  The first time we put him back in the wheelchair he threw an absolute fit.  Screaming, ugly crying tantrum and all because he loved the ocean so much.  I basically feel the same way when I have to leave the ocean too so I had some sympathy for him. We took turns holding him, letting him play in the waves, putting him back in the wheelchair for a rest and doing it all over again until he tired out, we did too and he finally went back without complaint.

Happy "indoor" camper

We also took him camping at Maggie lake, which is one of our favorite parts of summer as Todd’s dad and step-mom have property there.  It was a huge challenge this year to navigate two kids with special needs along with the other four.  The difference between Joseph and Vivien is that Viv is an indoor girl and could care less if we are all doing fun things and she is missing out.  Even when camping, she prefers the trailer to being outside.  Joseph on the other hand wants to be in the middle of EVERYTHING.  Leaving him out or behind is just about his worst fear and he will let you know it if you do.  So getting him ready and hauling him down the short, steep trail to the lake is quite the ordeal. Once you get in the water, you basically just have to stand there in it with him while everyone else swims, but he thinks it’s the best thing ever.  He also absolutely loved the “Padamobile” as we call the little golf cart that we drive around the lake in.  I think he even loved it more than swimming and the first time we took him out in it, his eyes were as wide as saucers.

"Padamobile" Ride

Back at home we also have generous neighbors who let us use their pool, and he spent a lot of time there with all the kids cavorting around him.  Again it is a huge amount of work to wrestle him into his swimsuit and life jacket and then out of wet clothes afterwards.  He is getting so strong, and yet with his athetoid CP - he continually moves and wiggles, often in very contorted ways that make even lying down an athletic event.  When it comes to getting him dressed (or in the car or even strapping him into his wheelchair) we say, “picture Arnold Schwarzenegger as an octopus who just drank a lot of coffee” and then wrestle him. He’s not upset, just excited and his excitement translates to lots of movement.  Silas is growing strong and tall and thankfully can help carry when necessary.

All joking aside, it felt like summer was an mixture of joy, meaning and sorrow at the same time.  After we came home from Seaside, I felt an odd sense of grief, because what has been a source of joy, rest, relaxation and life for me, was just a lot of work and didn’t really bring the refreshment that it had before although it was still good to be with family and was not without fun.  Taking care of Joseph changed the experience for both Todd and I.  I love getting away with the family, and though caring for the kids was still a lot of work, I always found refreshment in it.  However, that didn’t compare to the work of caring for Joseph.  It was honestly just hard, physically and emotionally.  On the other hand, watching him experience all these new things, the kids bond with him and our family love each other did bring me joy and was meaningful.  It was a paradox

As I’ve mentioned before, we’re pretty sure his enneagram is 7 and what this personality type loves the most are exciting experiences.  This is him to a T - which makes living with a disability even harder for him (and for us), because he never wants to be left out and he wants to experience everything.   There were times this summer when I’d take the kids to the lake and it would be impossible to bring him if we were paddle boarding or going down the river.  We learned that if we were leaving, we would need to sneak around and not let him see them in swimsuits or there would be tears and anger involved.  Despite his sweet, charming ways, he can definitely throw a good fit.  It was also hard to plan any family outings because either Todd or I or one or two of the kids would have to stay home, or if we brought him, it was exhausting work. 

Todd and I did manage two days away at his parent’s cabin with Vivien, which was relaxing and refreshing.  My mom stayed with the kids at night and we paid Vivien’s wonderful caregiver, Rihana to take care of Joseph during the day.  It was so good to reconnect with each other and have some quiet relaxation.  Viv is feels easy to care for by comparison to Joseph so it did feel like a break.

The other thing that brought some sorrow, was that after going to Maggie Lake, we realized it is probably not going to be feasible to bring Joseph and Vivien camping next year.  I work really hard to have fun.  Both for my kids and myself.  I am willing to make all kinds of sacrifices and take great effort to make vacation successful and the more kids we’ve had, the harder it has gotten to make it work, but we’ve done it.  However, just a day or so into camping with everyone including Joseph this year, Todd and I realized that it was just too much.  We were literally working morning to night and there was no downtime when you counted all the little things that had to happen to keep things going with Joseph and Vivien in a camping and swimming setting.  We decided that next year, one of us would stay home at night and the other would stay with the 4 at Maggie lake.  We’d make day trips and were hopeful by then have a caregiver for Joseph as we do for Vivien.  We will probably bring Joseph on a couple of the day trips so he can still experience Maggie lake, but it will not be the whole time. It would mean no sitting around the campfire at night for us as a whole family, and either Todd or I traveling 3 hrs a day or so back and forth.

This is a total first world problem, but I was surprised by how much gloom descended upon me as we made this decision.  Maggie Lake is one of our favorites and to not go as a whole family next year made my heart sink.  Seaside was doable as we have a washer, dryer, dishwasher and the setting is manageable because of the condo conveniences.  It was still a lot of work, but possible.  Todd and I also discussed only doing one or two family trips a year and making any other trip we take, smaller, with one or the other of us and fewer kids.  We could still enjoy time with the kids, it would just look different.  I was frustrated and sad about these limitations on our activities and plans. I'm an enneagram 7 too! (but with an almost equally as strong eight wing), but I also knew that again, these are first world problems and the opportunities we are giving Joseph are large in comparison to our small “sacrifices”. To be able to vacation at all is a privilege.  A more accurate perspective of the world is that I can be truly grateful for the time we get away regardless of how many of us get to go.

The other thing we experienced this summer along with the entire US was all the turmoil surrounding George Floyd, Ahmed Aubrey, Black Lives Matter, the protests and riots.  I have always cared about racism but this year of course it became more personal with the adoption of Joseph.   

Grandma Merry Love

I truly believe that there are many in this country who do not understand what people of color experience on an everyday basis.  When we went to adoption conferences and received training to become a bi-racial family, we did a lot of educating ourselves.  We read books, listened to documentaries and podcasts by both white and black people, giving us a deeper understanding of the issues.  There is a very real bias in our judicial system, when it comes to crime and punishment for black versus white.  If you dig a little deeper, it is clear statistically that there was a time in past history, and even in very recent history that crimes by black men were given much stiffer sentences than white men.

While many Americans are not racist, all of us have bias and bias and this is something that we need to consider in our own hearts.  To say with pride, “I don’t see color” is a nice sentiment, but it lacks understanding because even if we “don’t see color”, there are many who do.  Because of this our “not seeing color”, actually keeps us from understanding what a black person goes through because we are unable to see how they are treated differently because of their skin.  When a black mama has “the talk” with her child, it isn’t about sex.  It’s about how to conduct yourself around the police.  It’s about keeping your hands out of your pockets when you are shopping and putting your hood down when you enter a store.  Wrongful accusation and bias is rampant whether we believe it or not

At the conference we attended, we heard from white moms who thought that we live in a pretty liberal state, where racism is rare, who, when their cute little black boys became teenagers, were shocked by how they were treated at school and in society and how quickly they were accused of things that never happened. They found that when they stepped in as white parents, all of a sudden the attitude toward their sons became friendlier.  These are conservative white mamas dealing with school administrators who quickly seemed to shift their perspective when they realized the parents of the boys they were dealing with were white.  Naïve white adoptive parents found out that racism is real and it is still here.  There are many good white people who may not be racist themselves but truly do not understand what our black brothers and sisters go through.

On the other hand, we do believe, along with Martin Luther King, and Abraham Lincoln, that we need to see people by the content of their character, not just by the color of their skin.  Our criminal justice system needs to be reformed.  Our police absolutely need reform and change.  But this does not mean that all white people are guilty or that all police are wrong and need to be defunded as many are calling for.  We also saw here in the Seattle area that peaceful protests and riots are completely different things.  Watching Seattle Police Chief, Carmen Best, a strong, articulate, compassionate yet tough black woman experience harassment, bullying even at her own home, finally resign from the force because of the pressure shows that there are political agendas and movements that have nothing to do with real care for black people.  You do not have to choose between loyalties to people of color and police.  There are good and bad policemen and the answer is to reform our system, not eliminate it.  There are many people of color speaking out in favor of the police, as well as many black police.  This does not have to be a polarizing movement.  But change does need to happen.

Iva and the Lewis & Clark
Statue in Seaside

In addition to this, we need to look at history with a critical eye.  Our kids have been learning more about the Civil War.  They also recently studied Lewis and Clark, who are heroes of sorts and read about Clark’s black servant, York who was outstanding in his service of the expedition and worked hard to make it successful.  When he asked for his freedom, afterwards it was not granted to him, even to go home and live with his wife who he had not seen for years.  He was permitted to visit and then go back to his labor. We talked with our kids about him and what a hero he was as well and how he was truly mistreated, despite his loyalty which wasn’t even deserved.  I am adding a link to an interesting article in the Washington Post about him. 
 

We do not need to cancel or rewrite history.  We need to find out what is true and take it for what it is worth, understanding the sins and victories of those who went before us.  Not all white men in history were bad.  Over 300,000 white men proved their opposition to racism in the Civil War, giving their very lives for the freedom of their black brothers.  You cannot give more than your life to prove your devotion.  Again, we don’t have to rewrite history.  But we do need to seek truth and recognize what may have been left out or not emphasized correctly.  Were Lewis and Clark still amazing explorers who contributed to our country?  Yes.  Were they also sinners, in need of reform?  Absolutely. Were there others who should have been honored and remembered like York and Sacajawea? Definitely. This is just one example, but learning to dig for truth in our history is important.

As we move forward, I pray that we will continue to do the work that Abraham Lincoln spoke of in the Gettysburg Address; That we would “be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced”… and “to the great task remaining before us” of loving and respecting our black brothers and sisters well, and working towards laws in our land that will accomplish this.

Adoption in the time of Coronavirus

Once again, I am remiss in updating this blog. I can’t believe that it’s been three months since I last posted. A lot can happen in three months and the world has pretty much turned upside down and nothing is the same thanks to covid-19, the coronavirus.

My last post was in mid-February and we were hopeful for a g-tube for Joseph. Because of his NG tube he gained about 10 lbs over the course of a couple months which was ⅓ of his weight. He has also grown length wise as well so his body was really needing nutrition and the tube feeding was a huge blessing. Because of the mold issue in the operating room at Children’s Hospital in Seattle, and because of his anatomy being so difficult that an ER visit was required every time we put it back in, we made an appointment at Mary Bridge and went through all the preliminary appointments and were scheduled for surgery March 18th. However, Children’s called with an opening on March 9th and we snapped them up right away, despite the fact that it meant that Todd and I didn't get to spend our anniversary together. We have spent other anniversaries in the hospital however and we did celebrate earlier. We were so thankful that everything went well. He spent two nights in the hospital and came home with no NG tube and we were so thankful

We didn’t know how close we got to not having his surgery for months, as shortly after that, elective surgeries were canceled due to the coronavirus. In retrospect we look back with gratefulness for this.

We were also getting close to having Joseph start school. We received a loaner wheelchair and with the g-tube surgery, everything was in place and the school was just finishing up his evaluations and getting ready to do his IEP (individualized educational plan). School was not to be, as you know and Vivien came home from school as well. We were especially disappointed for Joseph. We knew that there are so many things he was going to learn communication-wise, as well as therapies that he would be able to get daily, special equipment that he could use, and all the benefits that come with school. Both Joseph and Vivien continued on with their private therapy for a while until even that was closed.

Thankfully, we were able to do some things with him at home. One thing that has been especially fun for him is a sling that we have for Vivien that hangs from the ceiling and allows him to bear weight on his feet and have some sort of control over looking around and turning. It also strengthens his head as he has to hold it up while he is in it. The first time we went in it, he went completely crazy with joy and we put on some music and he danced around like a little marionette. He was thrilled. We have also played with a ball, kicking it back and forth to him as well and he loved that, most likely having seen soccer in Africa.

Vivien is doing well and though we all had bad colds in March, everyone has stayed well and healthy. Her caregiver, Rhiana has continued to come a few times a week even throughout this time and she is so wonderful with her.  The kids have taken to a new form of entertainment by taking Vivien and hiding her when I leave the room for a minute.  When I come back in she's not where I left her.  I have found her in the bathtub (on blankets of course) and even in the laundry basket, which Viv actually thought was pretty funny.  Our quarantine craziness has reached new levels.

However, I personally feel like God has worked in our lives in a rather amazing way. As I wrote before, our first couple months with Joseph were incredibly difficult, both because of my struggle with insomnia as well as the difficulty of just caring for his day to day needs, combined with all of the other necessary things that happen in a day to make our now 8 person family run. As I wrote before, I kind of felt like I was drowning for a while and life felt very dark. As I began to sleep better, I felt more hope and a little more positive. Even Joseph getting his NG tube and now his g-tube has been a huge help in the time it takes to care for him during the day.

A couple of things happened though that I felt like were so clearly God’s working in our lives. The first had to do with covid-19. I had been expecting that when Joseph started school, it would be both wonderful for him, and it would also free up some time for Todd and and I would feel a little less overwhelmed than I was feeling.

In early March, I remember thinking about the season in our life right after Iva was born in 2012. We were enjoying her and our life was busy but not overwhelming. It was just a good season. Shortly after that we became pregnant with Vivien, which involved so much drama. After things sort of settled down with her we felt the call to adopt and there has been more drama in our life. I’m a girl who likes a little drama. I don’t like it boring. But as I was thinking about that season with Iva, I remember someone asking me for prayer requests at that time, and responding something to the effect of, “I’ll have to think about it. Things are going pretty well right now.” As I thought about that in mid-March of this year, I breathed a tearful and pleading prayer to God. I asked Him to allow the next season of our life to be boring. Just for a little while. “Lord, could you make it boring?” I felt so incredibly exhausted and done with drama.

I

Home Movie Watching

expected that things would feel less stressful once Joseph went to school but that was not to be. However, as church, home school co-ops, music and sports activities started canceling right and left, I started feeling a bit of relief. Then as even play dates could not happen and we were told to stay-at-home, I was almost gleeful. To be told to stay home and just be with our family was sort of a dream come true at the time. I'm a social person, but as I get older, I love hanging out with my kids and it honestly seems like with the flurry of life I don’t get to as much as I want.   I didn’t expect this at all. My stress level went down and I started sleeping better and better. Although life at home with a family of 6 kids isn’t ever “boring” truly, life has slowed down and I am thankful for God’s answer to my prayer, in a way that I certainly didn’t expect.  We've been able to do things together like walk at the park (when it is open), play pickleball in our driveway, watch home movies, and just hang out.

Vivien, Joseph and Iva "practicing "
standing....

I would never wish what is happening to our world on anyone. The sickness and death that some are facing, the unemployment, the hardships of having kids at home, especially for working parents, and the financial difficulties that are coming along with all that is happening in our world are not good things. But God does work all things out together for good for those who love him and are called according to His purposes. And this has just been a really good time for our family. It has been the reset button that we have needed.

In addition to this we are really getting to know Joseph and his needs and quirks, his attitudes and his capabilities, his personality and what makes him happy and sad in a way that probably would not have happened if he had immediately gone to school. We can see God’s hand in this also. We are working with a rehab doctor getting him off the medicine he was on as well and that has been a challenge. It is good to be able to do it at home and recognize his habits and how he responds.

Vivien is doing well at home although she is fairly happy anywhere. We are thankful that her caregiver Rihana is still able to come during this time. She is wonderful with Vivien and even though she is not responsible for Joseph, he loves her too.

Onee prayer request we have is about a waiver that we are trying to get for Joseph. Vivien has a wonderful caregiver who comes a few times a week paid for by Medicaid. We've applied for Joseph as well and been approved as eligible for DDA and can now apply for the waiver. There is a limited amount of waivers the state gets and we will be applying for one as soon as we are given a case manager. There are lots of applications and not everyone gets one. It could take up to 4 months from when we apply to hear back as well. Can you pray with us that we would be able to get the waiver for Joseph to have some in-home care and that it would be expedient? When we needed equipment for Viv when she was born, so many of you prayed and we felt like God did a miracle with insurance and her pulse oximeter. We are asking Him for favor for this waiver as well. We should have an interview about it in the next few weeks.

Celebrating Passover with Grandma Online

Overall we are thankful that though the world is changing all around us and life looks different, God has used it in our lives. The rest of the kids continue to home school and just finished up co-op for the year. They are missing their friends, but thanks to text and messenger and Netflix parties they can still talk, watch movies, play the piano, play video games and even cook with their friends. Silas and his friend Seth have been cooking together each afternoon. Who knew? Lucie and Iva play a horse video game with one of their friends while chatting on messenger and Maggie has spent a lot of time with friends online as well. Such a strange way to have social interaction but it works. We’re looking forward to real human contact eventually and are hopeful to be able to see friends this summer.

Happy spring to you and yours and thanks for reading!

Finally Home!

(I wrote this about a week and a half ago from the ER and am finally posting it.  Perspective...)

Wow - If you were just going by this blog, you’d think we’d fallen off the face of the earth after going to pick up Joseph. Good thing for Facebook updates. The truth is we did go and pick up Joseph and finding moments to write since he has been home has been challenging. Actually, there have been moments where I feel like I’m drowning. I will probably write a little more in-depth about some of our experiences of the last month and a half, but one thing we have learned from other adoptive parents is that much of what we are feeling is pretty normal. Transitions are always going to be hard and some of the things we have been experiencing are difficult but fairly common.

It’s like the first time you have a baby. You can read and learn and talk to other people and imagine but when your firstborn comes and you are dealing with a lack of sleep and changing diapers and feeding and spitting up and messes and all sorts of bodily fluids, it sometimes feels like you are drowning at the beginning.

The good news is that Joseph himself is doing quite well. To him, coming here has pretty much been like Disneyland and most of the time he is a pretty happy boy. He is incredibly social, personable and gives out smiles and charms everyone he meets. We have several doctor appointments and therapy appointments a week - sometimes two or three in a day and he has mostly taken them like a champ. He loves to go out so most of the time it’s a fun adventure for him. He is truly delightful.

Our last trip to Uganda was fairly uneventful by comparison to the first one. It was quite short and we arrived and brought his passport to the visa office on Wednesday. We were told we could pick it up Friday. We were able to visit with Brenda and Precious and then Edith brought Joseph to us Friday afternoon. Edith wanted to personally go with us to the airport so that Joseph could understand that she was not the one keeping him from us. It was such a difficult thing for him last time to have to go back to Home of Hope and she wanted him to have a good experience saying goodbye. He was so happy to see us. We did make a wrong turn on the way to the airport, which made me a bit nervous but we’d left plenty of time and arrived with time to spare. I’m so thankful to Edith and all that she has done for him and for all the children at Home of Hope.

The trip back with Joseph on the plane was just as difficult as you can imagine - probably more so. Traveling about 26 hours with a layover overnight and needing to change pants (of a 6-year-old...on a plane in a cramped bathroom!) and feed (which is a huge ordeal with lots of mess) and try to make sure he gets to sleep, with a little boy who can’t even lift his head was as challenging as you’d think. Silas and I kept our sense of humor about everything as well as we could but even Silas was about ready to bite someone’s head off by the last couple hours of the trip.

However, when we arrived home, Joseph was excited to see everyone and all the kids were so happy to see him. He is truly a delightful boy. So social and content most of the time, despite his difficulty and spasticity. He only cries if he is at the end of his rope and he does get scared of small things rather easily. But we are learning what those things are and most of the time he is happy.

Getting settled has been a huge transition. I feel like I have been drowning but am slowly finding my way to the surface as things have been getting easier and we are starting to understand and get to know what he needs better. Todd and I have both had ups and downs for sure over the last few weeks. Most of the time one or the other of us will be discouraged and we can lift the other up. Some days have honestly felt very dark. But we are emerging with more hope and God continues to give us lots of grace. And I’ve written before that while caring for Joseph can be incredibly difficult at times, Joseph himself is truly a delight.

One of the things that has compounded the difficulty was that other than my first night home (I’d been up for almost 40 hours straight and I slept a solid 8 when I got home) I have been having trouble sleeping. In 2010 I went through a very difficult time of insomnia and anxiety that lasted around 10 months. After Joseph came home, the first week I went right to sleep every night at around 10 but woke up at 1:00 am with what was almost a panic attack and couldn’t go back to sleep. I was getting about 3 hours of sleep a night. I literally had almost a month of nights and days mixed up after being at home, then going to Uganda (which is 11 hrs different in time) for a week, then coming home for a week, then going back for another week and then coming home again. Many of the symptoms I am experiencing are similar to the ones I had in 2010. It has messed with how I have felt about the transition, making it feel more negative and dark. In addition to this, caring for Joseph is very physical, which is not great when you are exhausted and getting little sleep.

I did take over-the-counter sleep meds for a while but now I am rarely taking anything. At this point, I am getting more nights of good sleep than bad, which is a good sign that I am coming out of it. When I went through this before and saw a counselor, she explained this to us. When you are struggling with anxiety or depression, when you are having a difficult day, you believe that all your days are like what you are feeling at the moment. However, it’s usually not true. Insomnia and anxiety are not problems that go away immediately. It is gradual and I am trying to remember that when I have a difficult night of sleep for no apparent reason. I am now at the point where I am having more good than bad and I am trying to focus on this.

Todd has handled the transition much better than I have although he has had some low moments as well. He was super encouraging and strong in the first couple of weeks. He gave me a sweet song that encouraged me and reminded me that we are in this together. In addition to this, because of his medical expertise, he is amazing with Joseph and I am so proud of the dad he is.

From a medical standpoint, there are so many improvements that have been made. It seemed to take a while to get the ball rolling and he spent several days a few weeks ago in the hospital admitted at Children’s where they did lots of tests and also placed an NG tube which allows him to be tube fed instead of orally fed. Because of this, he has gained quite a bit of weight already and looks so much more healthy. Because he aspirates and it is so difficult for him to eat, many of the medical personnel have told us that it is amazing he has lived as long as he had, orally fed and without infection. He will still be fed orally for therapeutic purposes. 

He needs a g-tube placed surgically (which is what Vivien has) but because of the issues with the operating rooms at Seattle Children’s, he is on a waitlist. This has been very frustrating. An NG tube goes through his nose and into his stomach, taped to his face. It is much easier to pull out than a g-tube and it has accidentally come out several times now. Unfortunately, his anatomy is such that we can’t put it back in ourselves, and even the professionals at Children’s had to use fluoroscopy with a camera and sedation in order to get it in. So every time it comes out we have to head to the ER for it to be placed back in. It is definitely a disruption and takes most of the day so needless to say, we can hardly wait for a g-tube placement. I am actually writing this blog from the ER right now as I wait for it to be placed back in (and unfortunately, it is Lucie’s birthday).

We have visited the hospital quite a bit this month as Vivien also had to be admitted for a few days with a bad case of RSV. She had vomited so much that they had to give her IV fluids and oxygen. Thankfully it is the first time she has had to be admitted to the hospital for sickness since 2016. The silver lining was despite nurses coming in every two hours, I slept wonderfully for two nights knowing I had no responsibility to check on anyone as she was monitored and the rest of the kids were home with Daddy.  Todd and I joked about my "hospital vacation".  You know home is a little stressful when you get your best nights of sleep at the hospital despite nurses coming in every 2 hrs.  But honestly it was truly relaxing to just have one to care for and I loved my sweet time with her.  She barely moved or opened her eyes at the beginning but by the end she was smiley and back to her normal self.

The other exciting things are that Joseph has started on physical and occupational therapy, he has a great wheelchair and adaptive car seat coming and we are working on getting him on the right meds little by little. He is also sleeping fairly well himself so I am thankful for that.

He has also gone to a rehab clinic to try to get him on the correct medicines which will be good for him as well. We are in the process of registering him for school, but we need a wheelchair and a g-tube so we are waiting on those as well.

As we have been in and out of the hospital several times this month, we are so thankful for family and friends who have brought meals, given the kids rides and and helped us out in so many ways.

I feel like God has taught us some good and deep truths in the last month and a half, about the gospel, His grace and complete and utter dependence on Him. I have felt so incredibly weak and helpless at times and like it is hard to face what is ahead and yet He has also given us hope and wisdom and countless Scriptures and insights into the truth about our situation and about Joseph. I hope to write about some of these in the months ahead but for now, I will post this small update and ask for continued prayer for wisdom as we navigate the months ahead, and for sleep and rest and peace for both Todd and I. We are hopeful and excited for all that God is going to do.