Hey Friends,
I know it has been so long...too long...since I have posted. I thought I would take a few minutes and get you all up to date.
I guess the biggest thing people want to know is, "How is Clara?"
Well, thank you for asking. :-)
Clara is doing okay. I know I shared some time ago that we had put her on a new supplement for muscle pain and taken her off of the ibuprofen. Overall that is still going pretty well. I am a bit concerned, though. There have been a few days recently where she has complained of her arms and legs hurting, and she has not complained of her arms hurting in a very long time. She has some mood/anger stuff going on, as well, and with her it is always hard to know if we are dealing with a behavior/heart issue, or if we are dealing with unmanaged pain that she doesn't know how to deal with except to be mean, grumpy, and whiny. I keep praying for wisdom....and recently, giving her ibuprofen, at least before bed. We go back to the U of M next week for our second visit with the endocrinologist. This is the first visit since her diagnosis of hypophosphatemic rickets, so I am armed with lots of questions this time. Specifically, I want to know if all of her mito symptoms can be explained with rickets. I am still struggling a bit with that one. Two weeks later we will be going back to the U of M to meet with the geneticist/bone specialist. In the midst of all of this, there is one final test that we are trying to get taken care of before we come to Georgia this summer and meet with her geneticist there. It takes 21 days for the results to come back, but so far, neither our private insurance or her supplemental insurance want to cover it. I am frustrated to say the least, as I really think we need those results before any final decisions can be made about what is really going on with our girl.
As heavy as this weighs on my heart, always, right now there is something even heavier on my heart. The people close to me know about it, but I have never shared publicly, for two reasons. The first reason is the privacy of the child involved, and the second reason is for fear of being judged. However, we are to a point where we desperately need the prayers of our praying friends. We have reached the end of our rope (which is usually the best place to be....sometimes the ONLY place to be for God to do His work and to make us realize how much we need Him.) As many of you know, we have struggled with issues with Emilie, our second-born, for years. She started out as this happy, cute, and charming little baby and toddler. When she reached the end of her 2's and entered into her early 3's, we noticed some changes. At the time, we wrote it off to "being three" (which in my opinion are WAY worse than 2's). However, as years went by, things got worse, and worse. About 3 years ago, she was officially diagnosed with ADHD. I was very,
very resistant to this diagnosis. I considered it a failure on my part, despite feeling like we were doing everything humanly possible for this child in the way of love, support, and discipline. I had always been led to believe that the ADHD diagnosis was for the parents of kids who just didn't want to discipline them and wanted a quick fix. As resistant as I was to the diagnosis, I was even more resistant to the medication. However, things got so bad, and Emilie's self-esteem was plummeting so low, that we had to do something. We sought lots of council from her doctor and from people in our lives that we have great respect for the wisdom they share with us. We decided to try the meds and were absolutely amazed at the difference. This was truly not a decision about behavior, although her behavior was greatly improved. It was mostly about Emilie feeling like a loser and a failure because no matter how hard she tried, she could do nothing right and for, what was becoming more and more obvious, physiological reasons. Within weeks we saw great improvement in her concentration levels to do her schoolwork, to finish a conversation, and to remember to finish doing things like brushing her teeth without getting distracted and walking away in the middle of doing it. Not to mention, she was just more peaceful and pleasant to be around. It has to be very frustrating to not be able to concentrate on anything.
For a while, things were much better. However, about six months before we moved, Emilie came running into our room one night pale, crying, and in an absolute panic. We had already tucked everyone in bed about an hour earlier (however, one of the worst side-effects for Emilie and her ADHD medication was the inability to fall asleep at night). I asked her what was wrong and what she said still gives me chills to this day. She said, "Mommy, I need you to come to my room
right now. There are three hunters outside my window shooting their guns and they are screaming at me that they are going to come into my room and kill me."
Doesn't that sound like what you want to hear from your 8 year-old daughter?
I went into her room and, of course, saw nothing outside her window. She begged me to go outside and look, so I did. I went outside, looked around and said, "Emilie, there is no one here."
I must admit that, at this point, my warped sense of humor very briefly took over. I couldn't help but think that if we were on a sit-com, that is the point where I would have been shot by the real hunters in the front yard.
However, the humor was very fleeting, and truly, I wish there had really been hunters in the front yard than for Emilie to have to deal with what she was dealing with.
I should interject here that there is a long history of mental illness in our family. I just always prayed it would miss my children somehow.
Thankfully, we had an appointment two days later with a fabulous child psychiatrist. The short version is that we couldn't afford all the testing she needed (and still needs), but he feels she definitely has a mood disorder of some sort. She is too young to know exactly which one we are dealing with, but that day, she had to go on more medication. We found out at that appointment that not only was she hearing hunters, there was someone named Ashley on our roof talking to her and someone under her bed. So as resistant as I am to medication in general, between Clara and Emilie, I have a cabinet full of it.
The new meds helped her for a while, but in the last three months, things are getting really bad again. Some days, it is like she does not even take medication. She is in counseling here and we have been referred to another child psychiatrist. It is possible that with puberty on the horizon (she is almost 10), her medication needs to be changed. Who knows. We have had it suggested multiple times by my doctor, her counselor, and friends that we are dealing with satanic warfare. I truly believe that's possible. Why in the world would satan want what we have just done...given up everything to moved 800 miles to go into full-time ministry....to be easy for us? Furthermore, the number one way our society is being destroyed is by the breaking down of our families. By God's grace, I am determined that ours will not be one of them. So, I am going to read up on the topic. I definitely believe it exists, I just don't know much about it.... my interest has definitely been peaked .
This is one of those posts where I am going to have a hard time hitting "publish post". Again, I have been so judged in the last few years. I have mistakenly shared with people I thought I could trust who have said things like,
"Jeannie, you better teach her to (fill in the blank) now because it's going to get harder as she grows".
Or
"You better do something about that now before it gets worse."
Or
"You need to (fill in the blank)." As if we have not tried everything...at least everything we have known to try. We have always felt we were good parents. Not perfect, by ANY stretch, but good parents. If all four of our kids were this way it would be different, but it's just this one.
Or
"She needs vitamins."
Or
"You haven't spanked her long enough or hard enough."
Or
Just a judging look, like "Send her to me. I'll get that fixed."
Or
A whole host of other parenting advice that works on 'normal' (and my other three) children.
What I now know is that the people who said those things do not have a child like Emilie. They are not raising a child that it is like the main character in the movie
Twenty First Dates. You make some progress one day and the next day, it's like it never happened.
Her counselor believes she has some sort of learning disorder where she does not learn from experience, and I think she might be right. I could tell story after story.
What I do know is that Emilie is fearfully and wonderfully made....God made her just the way she is and He gave her to us for a reason. I am not sure what that reason is, yet, because I can think of a hundred other people who would be more equipped to help her. But here we are, seeking wisdom and grace...and I know He will give it. On the up side, she really can be so sweet and so generous (almost to a fault) and is the most loyal friend you would ever want. She is smart and
extremely creative (and as a result, very messy). She also loves the Lord....gotta love that, too. And one of the most hopeful things....she
wants to do the right thing. If she didn't care about doing the right thing we would have an even bigger problem.
We have considered the possibility that she, too, has Mito. There has been a great deal of research done on the link between Mito and Autism/Asperger's/ADHD, and what they are finding are very strong connections between them. If Clara has Mito it would make sense that another of our children could have it, but if we, in fact, find out Clara does not have Mito, there is much less likelihood that is what Emilie is dealing with.
Please pray we get some answers that do not involve more medication...real help and practical strategies. Please pray that her older (thinks-she's-perfect) sister would show her some grace and mercy and stop treating her like she belongs at the bottom of the food chain. Pray that her nasty habits would improve and that her weird and awful behavior things would not rub off on her baby sisters. Most of all, please pray for peace for Emilie. Her grandmother described it best...it's like she's tormented. She doesn't even rest peacefully.
I have never been comfortable with the idea of "airing dirty laundry", however, I believe that none of us really have a ministry of any type until we are ready to be open and honest about our struggles. My prayer is that if someone else is dealing with these same things that they would know they are not alone. These are the kinds of things so many people struggle with silently...not exactly the kinds of things you post as a Facebook status...but they are real and they are painful. I have been writing/working on this post for well over a week. I have second-guessed myself a million times, thinking maybe I shouldn't post it. I have prayed about it A LOT, and feel no peace about deleting it. I have considered just writing another one and pretending this one does not exist....but no other ones will come. Emilie is an emotional basket case today....I would appreciate your prayers. So for whatever reason....this is me, hitting "publish post".
I pray your day is blessed!
Love,
Jeannie
