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.