Well, it’s been several months since my last post, so we are long overdue for an update. I don’t have any *real* excuses for my lack of diligence in creating new blog posts except, well, maybe the fact that we have 13 children. Yeah, that might count as a good excuse.
So, everyone is doing really well. The reality is, however, that adoption is really hard. It isn’t the fairy tale you might want to think it is. We love our adopted children, and we are so blessed to have them in our family. But ADOPTION IS HARD!
Eden is sweet and compliant. She has amazing resilience. This little girls has been through so much, and she is strong and brave. I have a lot to learn from her. One thing I believe I have written about in a past post about her is her ability to be genuinely happy for someone else. She is also very kind to everyone and so cheerful most of the time.
Sometimes particular children aren’t very nice to her, and she is always so kind back. I wish I were as quick to forgive and so eager to rejoice with others as is our Eden. Lessons Eden is teaching me. We discovered shortly before our sabbatical trip in May that Eden is deaf in her right ear and has moderate hearing loss in her left ear. Despite the limitations to her hearing, she has learned a TON of English. She chatters away all day long. Eden has shown that she is very eager to learn. We have covered basics to lay the foundations for reading and basic math, and while she has some challenges to learning, she is doing really well with both. I’m aiming to have her reading by the end of this school year. Eden had surgery recently to reshape her ears which were congenitally malformed, so that she can be fitted for her hearing aids. I can’t wait to see how her language improves even more once she can hear better! We are also watching Eden’s back growth for progression of scoliosis. She currently has a 25% curvature in the upper back, and the doctor said if it progresses, we will need to consider putting her in a full-time brace to prevent it from worsening. Eden has been brave through every medical procedure. There are challenges with Eden, as there are with the other children, and I have been humbled by my own lack of patience with her at times. She is constantly asking the same questions over and over and repeating the same things all day long. At times, I lose my patience with her in these things, and school with her can be frustrating at times. I pray daily that she would see the love of Jesus in me, despite all of my own shortcomings.
Daniel is still very cute and charming, and still extremely challenging. He has picked up a lot of vocabulary in the last year as well, in terms of understanding and trying to talk. Daniel’s speech continues to be very limited. His pronunciation is very poor, and he only says a word or two at a time. He has added some short phrases, and I can understand most of what he says. The speech therapist we have been working with for about a year now, doesn’t think he will ever speak fluently. This is not uncommon for children with Cornelia deLange Syndrome, and we are actually really happy that he can speak the way he does. However, we may be adding more sign language to help him be able to communicate more fully. We did finally get a confirmed diagnosis of a submucosal cleft palate that affects his speech, and we are working with a craniofacial specialist to determine if corrective surgery should be performed. Behaviorally, Daniel continues to be very, very challenging. He seems to want to bother everyone all day long. He can’t stop moving, has obsessive-compulsive tendencies, and is very sneaky all day long as well. It was extremely challenging for me to keep track of him while also trying to homeschool everyone last school year. He was very resistant to learning anything at all from me, and would tear up papers, workbooks, anything I was trying to work on with him. If I got busy helping another child with something, Daniel would sneak away to another part of the house and get into everything he could find. This includes, books, CDs, DVDs, papers (sometimes important papers). I am constantly finding a book or DVD Daniel has relocated from where it belongs to a random place like between couch cushions or under other books or in a cabinet where it doesn’t belong. However, Daniel has improved in so many ways behaviorally, including being able to play for a little while with the other children. We bought a large inflatable water slide at the beginning of the summer, and he can often be found playing there with Tovi, Eden, Haddie, and the other younger boys. It is amazing to see him doing this and playing in a positive way with the other children, sometimes for an hour or more. AND he will slide down the slide, which isn’t something he has been too happy to do in the past. Daniel learned to ride a bike this year, and he loves to ride along when we go on walks. He is improving in knowing what is expected of him behaviorally and trying to do it. I know he just can’t control himself a lot of the time. He just reaches out and touches things, or gets up and runs around or says little words over and over. The challenges of Cornelia deLange Syndrome along with the effects of the trauma he has been through are a whopper of a combination. I have seen my own sinfulness in my lack of patience with him over and over, and I daily pray for supernatural intervention to make it through the days with Daniel. All of the challenges have led us to prayerfully make the decision to put Daniel in public school this year. So far, it has been a Godsend! The school has so many resources and services for children with special needs. When I first took him to enroll him, they told me they were going to place him in a mainstream 5th grade class (because he is “10”) and then observe and evaluate him for 45 days. He could then receive special services through the school and an individualized plan would be created for him. I explained to them all of the challenges he has, and when they met him and saw how he behaves, they started working very quickly to fast track this process. They also took my advice to place him in a Kindergarten class instead of the 5th grade while they are evaluating him. He is very small, and fits right in with the Kindergarten class. I have been very impressed with everyone at the school and with everything they are doing to help Daniel and support us as well. They even got him approved to ride the special ed. bus, which wasn’t supposed to happen until we had the meeting to create his plan (which probably won’t happen for a while). He rode the bus for the first time yesterday, and he was so excited about it and not at all afraid! He had actually been pointing to the buses and then to himself and saying “Daniel” for over a week, so we knew he was very interested in riding the bus. They have an aide on the bus who helps the kids and he is met at the bus by a special ed. teacher to go to his class. He is picked up and dropped off right at the end of our driveway! What a blessing! So far, he has done pretty well there, with some of the expected challenges. He has a hard time in the afternoons. Right before school started, we finally got an appointment with the neurologist, who said he also believes Daniel is on the Autism spectrum. He prescribed a medication to help him with his ADHD, and we are working to figure out what dose will work. I am not a huge fan of medicating children, but if I have ever met a child who could benefit from it, it would be Daniel. I think it has been helping him to calm down and control himself a little bit, but I haven’t seen a dramatic change. Hopefully, moving forward we will find something that works really well, with the help of the neurologist.
One thing adopting the children has taught me is how frustrating it is to deal with many different doctors when trying to help your child who has special needs. This is for all three of the children.
I have never had to deal with these issues before, and now I see how maddening it can all be. It took us months to get in to see the Genetic Specialist, and we still don’t have conclusive answers on many things. The shunt that was placed in Daniel’s brain while he was in China is apparently useless and wasn’t ever necessary in the first place. His blood work came back negative for CDLS, but that can happen with this syndrome, and he definitely has it. The Genetic doctor told us that she believes Eden also has a genetic disorder, but so far the blood tests haven’t helped us to pinpoint what it is. The medical assistant from the office who called me with the results couldn’t answer any of my questions, and we now have to wait until November to see her again. Maybe it doesn’t really matter what the genetic conditions are in particular, but it would be nice to know and also to get an official diagnosis because insurance companies need them in order to pay for whatever treatments and services are needed. Daniel’s diagnosis is now more official, although we still need an actual written document from the geneticist to show other doctors and places from which we are receiving services for him. I have spent countless hours on the phone trying to get appointments, trying to find specialists, and often I end up no further towards getting the help we need. There are huge waiting lists for specialists (such as the developmental pediatrician for Daniel). It takes months to be seen and even then we often don’t get the answers or help for which we have been waiting. I spent several months last year trying to find a therapist certified in a certain type of therapy that we have been told will help Daniel with his behavioral and attachment issues. I kind of gave up after several therapists were either not taking new clients or talked to me and said they couldn’t help us for various reasons. I am renewing my search this fall, however, and hope to find someone based on new referrals from the neurologist.
Another frustration has been dealing with everything the doctors (and insurance) require for one reason or another. When we first came home with Daniel and Eden, they needed dental work, but they couldn’t tolerate all the x-rays, exams and procedures. The dentist said the only way they would be able to be treated was under full sedation. The anesthesiologist wouldn’t put them under before assuring that they didn’t have other issues that could be a problem for the anesthesia. Of course, we understood this. With Daniel’s CDLS, there can be heart issues among other problems, the shunt could be an issue, along with other things. In order to check all these things out, however, Daniel needed to be sedated as he was literally terrified of any procedure and we couldn’t get him to cooperate with even simple things like an abdominal sonogram. Poor child has been traumatized, so it wasn’t his fault at all, but it was reality. So in order to get all the clearances that the anesthesiologist required, he had to be put under several times! Isn’t that just MADNESS?? I could write a whole book about the frustrations related to medical care that I have experienced in the past year. This post is becoming a novel already, so I’ll spare you. We are now in a better place with regard to Daniel tolerating medical things. He isn’t terrified anymore for simple things, and he has had hearing tests, abdominal sonograms, and other minor things done without any sedation at all. He’s even very compliant with blood work now. So, he’s come a long way, and that has made things way easier. Daniel had one surgery for undescended testicles around Christmas and is scheduled for another in about a week. The medical things for him and Eden seem never-ending, but we are getting used to it.
Haddie is a sweet, happy girl. When she came to us in late December, right before New Year’s, we knew she was a bit slow mentally. She was about to turn 14 and is a young woman physically. She had already started menstruating, and her body is developing. However, cognitively, Haddie is severely delayed. When Todd and Nina first got her in China, it became quickly apparent that she had some issues with personal care related to feminine hygiene. She urinated in her pants several times while they were still in China. We attributed it to the fact that she was probably very overwhelmed with all the newness and excitement, but it was something we weren’t prepared for. Since she has been home, Haddie has urinated in her clothes at least a handful of times. I’m not sure what that is all about, but now I know to expect it sometimes. Once, she soiled herself in bed, and she got up and tried to clean up the mess herself, and it was quite a disaster, with a huge mess in the bathroom I won’t even begin to describe. Most of the time, this doesn’t happen. I haven’t figured out anything I can pinpoint as to why she might have accidents, but it just happens sometimes. Haddie has been extremely slow to pick up English, and she really seems to have a problem with retaining information of any kind. We are still working on her remembering some basic words. She seems to understand more than she can actually recall to speak herself. I can give her instructions, and she will follow them. But she has only recently begun to be able to ask for a few things (banana, cereal, more) without us prompting her the words. She is more inclined to point at what she wants and smile than to try and come up with words. We are patiently working to help her slowly be able to say things in English for herself. Counting, math, recalling the letters of the alphabet, which we have gone over countless times, are all very challenging for Haddie. Even in her native language, the abstract concept of associating a number with an object seems to be difficult for her. We are trying to get her the help she needs. We took her to the neurologist, and he believes there is a neurological issue, but he said we will probably never know what it is. He said we can take her to speech therapy, occupational therapy, etc. to try and draw her out and help her learn. I am looking into some options for her. Despite these issues, Haddie is the sweetest, happy girl, and very compliant (not quite as compliant as Eden). She loves to help wash dishes and clean around the house, and she is the resident expert sweeper extraordinaire! She adores all of her siblings, and loves playing with little Tovi. She is eager to learn, just very slow at it. I am again being stretched in patience as I try to lovingly repeat things I have taught her countless times. Haddie, of all three of our adopted children, can give real hugs. Daniel and Eden are still learning how to really hug and accept hugs and love. Haddie just basks in the love and affection of her family.
All the other children are doing well. Abby is in her senior year of college and will graduate in May as an RN! Datiya graduated in May, and is beginning a Vet Tech program. David is a senior is high school and is doing so well at everything. Nina wants to grow up way too fast. Enoch is starting 8th grade, and taking a few outside classes for the first time ever! The younger children are all growing and learning so much all the time. Tovi has stopped imitating Daniel’s negative behaviors, which is really quite a relief. We are blessed with our busy houseful.
I haven’t written about all of these things in complaint at all. This post is just a window into the world we have taken on as parents not only of many children, but also three adopted older children with special needs. I don’t regret our decision to follow the calling to which God called us in adopting these three precious ones, and I am not even seeking for anyone to write me back with advice of any kind. I have gotten plenty of that. I’m just sharing our life. Sometimes people will ask me if I had known the challenges would I have still chosen to adopt these children, or this one or that one, and I have to say, yes. This life isn’t easy, but I would choose it again. I feel that God is refining me every day. I am humbled every, single day. I see my shortcomings every, single day. I see my need for my Savior every day as well. That makes the journey worthwhile. I never forget my need for Him and my complete dependence on Him. To me, that is grace. I have learned so much from these three brave and beautiful children God has blessed us with through adoption. And that is something I wouldn’t trade for an easier life. I trust God with their futures, just as I do for all of my children, and I know the journey is going to be a long one. I am okay with that. I am running the marathon. I am leaning on the Lord to help me keep up with what He has for me. I am accepting that I can’t do it all and that it will absolutely not be perfect. I am okay with that, too. Life is messy, busy, full of craziness and ugliness, but God is my strength. Bring it on.
“Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of our faith…” Hebrews 12:1-2a