Adoption Saga Part 10 - May Uganda Trip (I)

Wow - It has been way too long since I updated this blog. Mostly because we are now in a waiting period. We are hopeful for a court date when Todd and Maggie go to Uganda in October. Please pray with us that we will get it during that time!  There is still more paperwork that needs to be done, but nothing on our end.

I realized that I have not written about my trip to see Joseph in May. I got back shortly before school ended for the kids and it has been a bit of a whirlwind summer with not much time for writing. The short version is that I got to know Joseph a lot better, I definitely feel more bonded to him and I believe that he is more bonded to me as well. We have learned a lot about his needs and what it will take to care for him and who he is as a person. It was a bit overwhelming at first, but we know that God is going to give both us and him grace as we learn how to meet his physical and emotional needs. In addition to this, while we were there we were able to get quite a bit of paperwork pieces done, although they are not all complete. That's the nutshell, but for anyone who knows me, I'm not really a nutshell person so for more detail - read on. I had to divide it into a couple parts so here is part 1.

May Uganda trip Part 1

This time I traveled to Uganda with my cousin Rachel, her husband Isaac who is from Uganda, their 2 year old twin boys and newborn 3 month old baby girl. Isaac is a doctor and they are in the process of ministering there and building a hospital in a rural area to bring medical care to those who need it outside of the city. I stayed with them in Kampala and they were a huge help to me while I was there. Isaac drove me around and strategized with me on paperwork as we visited the lawyer, the probation officer and doctors, trying to complete adoption paperwork tasks. Rachel's has a degree in special education and her purpose in coming to Africa originally was to help with children with special needs. She helped me so much with Joseph, understanding what he needed, talking with him in both English and Lugandan and giving me advice and encouragement on how to care for him.. And I hope that I was at least a little help to them with their little ones also, especially on the plane right over there. I got to snuggle Lois (baby girl) and try to entertain the boys some of the time. Because they were bringing back as many supplies as they could we had 16 suitcases! to check. It was pretty crazy.

We didn't get much sleep but survived the transferring of planes and when we landed we were met with 3 cars of friends of theirs who were able to help with the luggage. We arrived at their home quite late and tried to get as much sleep as we could the first night, though our bodies were on opposite schedules and so were the kids. There wasn't much sleep happening between Lois and the boys. Several times I got up in the night to find Ezra or Aaron up and about.

The next day we unpacked and got settled. We had no electricity for the first part that I was there, and no running water for the last part. Things like this that even the poorest in America take for granted here, can be luxuries in Africa. Not having wifi, at the beginning either, I really missed talking with Todd especially. We tried to take it easy and just do the minimum of things that had to be done because we were quite exhausted. Laundry is a process, cooking is a bit more of a process, washing dishes is more of a process even in a modernized house in Uganda.

As you might remember from our social media posts, many of the children at Home of Hope, including Joseph had contracted the measles before I came. Joseph had been over it for a while, and Edith had just gotten out of the hospital so Mercy and a couple others from Home of Hope brought Joseph to us instead of us going there, as we didn't want to expose Lois who hadn't been vaccinated yet.

Joseph arrived Thursday afternoon. Mercy and the others stayed for a bit and gave us some medication for him and said goodbye. I wasn't sure how he was going to feel about them leaving. His lower lip came out once or twice but I reassured him and he seemed to do fine. He is such a beautiful child and it was good to hold him again. My heart is still learning what it is to bond with him and more of that definitely happened this week as I learned how to care for him.

At Home of Hope they'd taught me before how to hold him and feed him at the same time, but it was incredibly difficult. First of all, he can hardly hold his head up, but he is not a baby. He is most likely around 4 years old and though he is skinny he is tall. It was too hard for me and we ended up putting him in one of the boys' car seats and that worked better. Feeding him almost felt like an overwhelming challenge over the next few days. First of all - figuring out what he could eat with Ugandan food that needed to be mashed and soft enough for him to eat was a challenge. Next, the sheer amount food he needed seemed to take quite a while for him to eat. Third, figuring out his rhythm was hard. Because of his Cerebral Palsy the neurons that fire in his brain don't always work to tell him to open his mouth. When it was time to eat he was ravenous. He would get so excited that he'd clamp his mouth down on the spoon and I couldn't take it out. He would clench his whole body and clench his teeth. He was trying to open his mouth but his brain was telling his mouth to close down harder. You could see the frustration in his eyes, and a couple of times he'd almost start to cry. Sometimes he'd get a rhythm of sticking out his tongue and opening his mouth, but other times his teeth would clench again and he would just begin grinding them. It was difficult too because his head was all over the place.

Joseph is well cared for and though he has spent time in therapy and in a wheel chair, he has lived a lot of his life lying on a mat. He cannot even lift his head up if he is lying down, or turn it side to side well. His head is shaped long and narrow from the back to the front. If you lie him on his back, his head will flop either to the right or to the left so he is stuck looking in one direction. As you can see in the picture above, here he is lying down.  His eyes are wide because he can't even turn his head to look up at me because of the shape of it and his muscle strength.  In the same way, when I am trying to get him to face forward to try to feed him, his head will automatically get stuck to the right or to the left. So we always had to prop him up with a towel between his face and the wing of the car seat. At the same time, he would wiggle also and clench and have jerky movements typical to those with CP. Sometimes the food would come out. I would always end up with it on me, despite his bib, blankets and towels. Feeding him took about 45 minutes or so and by the end I was sweaty, he was sweaty and we were both exhausted with quite a bit of laundry to do after each feeding.

The first day I fed him dinner, let him play a bit, gave him a bath, which he was fairly happy about, and then put him in bed. He fell asleep easily and though he woke up in the night and wiggled quite a bit, he was quiet and seemingly happy most of the night. We slept in a double bed together so I kept tabs on him all night. He slept great but rest of us didn't sleep so well. The little boys and Lois were still on Seattle time which means day and night is switched. They had napped during the day and were literally up most of the night, talking and calling for mommy. Lois has a cold and would cough and cry as well. Everyone was taking turns. I felt badly for Rachel and Isaac. At least I could lie in bed when they were waking up every two minutes. They had to get up and deal with things. None of us got much sleep. Maybe four or so intermittent hours.

 

Kampala Traffic

I woke up early and took a shower and got myself and Joseph ready. Then came the wrestling match of trying to get him fed. We needed to go to the lawyer's and then the doctor's. Isaac was taking Joseph and I to both places. I had to think of diapers, and changes of clothes and figure out what we'd need for the day along with food. In Kampala, Rachel says that really all you should do in one day is one activity. Traffic makes it very difficult to do two. We did the lawyers at 10:00 (and we were slightly late - 10 minutes) and the doctors at 3:30. We were going on about 4 days with travel time of hardly any sleep. On the way to the lawyers I just felt completely overwhelmed with anxiety. I knew the paperwork we had to do was important. I knew I'd be carrying Joseph and trying to figure out the next time to feed him. I was just so exhausted I remember thinking that if it were possible explode from anxiety, I would! Both about what had to be done in the next week or so, but also thinking about bringing him home and what caring for him would entail. In my head I knew that the enemy wanted me to fear the future and be overwhelmed by the present. Isaac was so kind and prayed for me on the way, as he could see that I was struggling a bit.

Peter the Lawyer and his assistants

But the meeting with Peter, the lawyer went well and we came up with a bit of a strategy for some things we could accomplish while we were here including the report from Mr. Opio and a letter, very specifically written, from the doctor who would examine him. It was so helpful to have Isaac there because he understood from a Ugandan perspective what we needed, and how to ask for and communicate it to the right people.

We found a restaurant that served mashed potatoes and some things that Joseph could eat and again, feeding him was a process. Then we headed to the doctor. The doctor was wonderful and eager to help out. He had written letters for other adoptions before. One of the things that concerned me, and him as well was that he was malnourished. Edith does a wonderful job with all the children at Home of Hope. All the food is prepared for all the children and it is a healthy size portion. Joseph is very thin but we didn't realize he was malnourished. In getting to know Joseph however, we began to understand.

Joseph is continually moving and twitching. When you lay him down he is agitated and wiggling all over the place. His hip bones don't ever both touch the floor at the same time because he is arching his back and pushing with his feet continually (unless he is asleep.) At Home of Hope they prepare all the food for all the children at the same time. Joseph gets what everyone else gets and it is probably the right amount for a boy his size. But not the right amount for a boy who never stops moving. His caloric needs are probably two or three times as much as normal. We found this week that the only time he is really relaxed is when he is cradled in arms. If he is on the floor (or even in the car- seat) he is continually wiggling. He strains and stretches and beads of sweat break out on his forehead and he clenches his fists. We know that Edith has done well in caring for him, but in thinking about his movements it is understandable that he has a greater caloric need than the other children who do not struggle with the twitching.

Rachel determined that this week we would do our best to fatten him up. It was interesting because right after food and when he was held, his movements seemed to calm down a little. When we fed him, he would get so agitated and excited he can hardly sit still. And in his desperation for food he just gets almost panicky which makes it more difficult to feed him. We made the decision to feed him every two or three hours or so. Which made for a lot more time and work. In addition to this, we purchased some extra dry cereal that can be made into mash to leave at Home of Hope when I left so that Joseph can be given more calories every day and which Rachel can help supply until he comes to the US.

We also found out that he really hates the doctors. Even when I was holding him and the doctor was doing simple things like checking his back with the stethoscope or measuring his head he was cringing. And when I put him down on the table to be measured he just totally erupted in panic fussing and crying. I tried to explain to him that it was going to be ok but it was difficult. Then there was the long car ride home. That was when I realized how hard the car seat was for him. He does have physical therapy at Home of Home and some time in a chair, but most of the time he is lying on a mat.. Just sitting upright in the chair was exhausting him. When we'd talk with him and try to cheer him up he got this pleading look on his face. Thankfully after the first day or two, Rachel was able to find a rear facing car seat that reclined more for Joseph, because we had to do quite a bit of traveling and this made things a little easier for him.

But by the end of the first day I was just feeling exhausted and weepy about everything. And in thinking about the difficulties in feeding him alone and the time it took and the lack of bandwidth we already have at home I just felt so low and scared about the future. Overwhelmingly so. Over the course of the trip I kept speaking truth to myself (and Rachel and Isaac reminded me also.)

When we bring Joseph home, I will not be living in an unfamiliar place and we will develop routines that will work for him and for us. We will have proper equipment, like a wheelchair and high chair. At Home of Hope they do their best and he is on some calming medications for twitching but I have a feeling that he will be put on different medications that will perhaps be helpful. We will have lots of services for him. There will still be a lot of work at the beginning but things will be different and Rachel kept reminding me of this. And I wouldn't be going on 4 days of hardly any sleep. All of life looks different with sleep.

Unfortunately the next night wasn't the greatest either. Joseph fell asleep easily like he had the night before. It took awhile again for us to sleep because the little boys were still awake but then at around 2:00am Joseph woke up. He was crying and completely panicking. He was sweating, arching his back and looking at me with these terrified eyes. He seemed like he was in pain. Isaac and Rachel came in to try to figure out what it was. We decided to give him his pill for agitation that Mercy had given us and Rachel also have him a Tylenol suppository. We prayed for him and eventually he did settle and go back to sleep but again, I got about 4 hrs sleep. I also woke up early again.

I was incredibly low that morning. I felt like I was at the end of myself, I'd used up all my physical and emotional energy and adrenaline and I was ready to go home..... and the week was just starting. I felt like I should be at the end. By now we did have wifi and I was able to call Todd and spend some time with him crying and talking. He had some issues with the rentals at home and was also having a difficult time, but he prayed with me and was so comforting. He remembered a medication that Edith had said they were giving Joseph that he hadn't received. When he told me this and suggested giving him that, and things made a little more sense as to why he may have been so panicky. So Isaac wrote a prescription and were able to give that to him.

We were beginning to realize how much the spasms and twitching are a part of Joseph's life. It is hard to describe but think about a little toddler who never stops moving and is wiggly with high energy. At some point though, a normal healthy toddler will slow down and relax. However, only time Joseph really relaxes is when he is in someone's arms or asleep. Again this knowledge is overwhelming. When Joseph is by himself, in a chair or on the floor he twitches and spasms. However, as soon as you pick him up though, he calms down and his body relaxes. I was thinking about how busy things are at home when I am trying to get a million things done and attending to the kids. At the same time, the only thing that really calms Joseph down is holding him in arms. Which takes a lot of time. But I want to do it!

His needs are similar to a little baby's. But even in this I know God has a plan. We learned in our adoption classes and book that when children are adopted they will have gone through trauma. Bonding happens so much through physical touch. Joseph was abandoned at age one. Little babies are often agitated and moving until you hold them and then they calm down. Little babies need to eat every few hours. We will have a chance to meet his needs and bond with him. His needs are going to be all consuming for a while but at the same time, it will remind us that he need to experience bonding and love.

I felt this strong drive and desire to love him well. It is so important to me that we not just meet his physical needs, but also his emotional ones. If this means being held often, I want to do that. At the same time, between the length of time it takes to feed him and hold him I just don't know how we are going to do it. To be gut honest, with the lack of sleep and physical exhaustion of carrying him, the heat and preparing meals and being in a foreign country - I just wanted to get out of dodge.

But at the same time, God kept bringing me back to how overwhelmed felt about Vivien and her needs at the beginning. I remember when the nurses were trying to train me on how to feed her through her tube, and feeling completely inadequate and like I wanted to run. I was, exhausted from trying to give birth and having a c-section. I remember being secretly grateful and guilty at the same time that I caught a cold, which would put off my caring for her for a while because she couldn't risk the infection. And yet caring for her is now not too much for us at all. We have routines and though she is time consuming, life is truly a joy with her. I knew I needed to trust God for His faithfulness in the past. He has made life beautiful and good with Vivien. It was hard at first. It took so much but we are at a happy place with her.

I told God that I was going to trust Him that He is going to do beautiful things with and in Joseph and that He would continue to grow my love for him, deeper and stronger. I am grateful for the drive he has put in my heart to meet his physical and emotional needs. In my devotions that morning very morning I read, in the Passion translation: Lk 9:23-24 If you truly desire to be my disciple, you must disown your life completely, embrace my "cross" as your own and surrender to my ways. For if you choose self-sacrifice, giving up your lives for my glory, you will embark on a discovery of more and more of true life. But if you choose to keep your lives for yourself, you will lose what you try to keep." I knew He was calling me to this. Joseph is not a "cross". The work of caring for him however is part of the "cross" that we are called to but Joseph himself is a blessing and he is going to be a blessing to us. We know that as we His very name means gift or increase. We have embarked on a discovery of more and more of true life with Viv and we know and believe that God will do that with Joseph too. We know that surrender leads to more and more true life. But my week was only beginning...