Thursday, February 10, 2011

Spoke Too Soon

Just a couple of days ago I commented here that Garrett was well-behaved at school. Well, yesterday the bus pulled up to drop him off at noon and the driver asks me, "Does Garrett ever get violent or physical with you all at home?" Uh-oh. I said, "Uuuuuhhhhh, YES, all the time. He hits us sometimes, out of the blue hits or kicks the girls, and we have him sitting alone in the middle second row of our Yukon XL and the two girls in the very back, and still he sometimes hits the windshield throwing something when he is angry. We have tried every technique of parenting, punishment, rewards now for two years and we just cannot seem to get it to help anything. We feel helpless and frustrated about what we see." And then I almost cried. I tried to smile and make light of it. I apologized to the aide, Miss Vera, and to the driver, Miss Nicki, and then in a nervous moment of not wanting to cry and not wanting to completely blow it off, I told Miss Vera, the aide he has been mean to, that I would bring her boxing gloves and a helmet tomorrow...... NOT exactly appropriate comment as I SHOULD HAVE been sharing our coping mechanisms, but for one, nothing is working, and I was afraid I would completely create a puddle of tears and need a canoe to return to my door. I explained we were getting ready to start behavioral therapies and that he is on two psyche meds, but I had to end the conversation and swallow hard and walk back to the house. The driver, Nicki, called me later to make sure my feelings were okay. I guess she senses my awkwardness and emotions. She is a very kind Christian woman and I consider her a friend, and she was so sweet to check on me. We talked via phone for some time, and she explained the situations on the bus more, and I explained how we handle them better, and all in all we had a nice chat.

That is the intro to this: The future scares the mess out of me. It truly does. The past weeks, Grouchy and I have talked more about the mental issues that are surfacing in Garrett, and I get scared thinking of what he may be like in the future. This is still a pretty raw emotion, and it is hard to put into type and may read terribly, but here goes. He does not have enough energy to combat his body, and now even more, control his brain. While he has Autism, ADHD, OCD and anxiety, and he is on two meds for those things, he does not have what most have to deal with things: ENERGY. He has a Mitochondrial DNA Depletion Syndrome, so his body is depleting (running out of) the DNA necessary to make more mitochondrial DNA which makes mitochondria, which make the energy for all cells in the body except red blood cells, and these mitochondria keep him alive. When the mitochondrial DNA depletes down to the point where mitochondria cannot be made enough to fuel the body, you no longer can live. Garrett has just over 50% now, started at birth near 100%, and that means his is halfway gone now. There's your mtDNA lesson for today. I need to do a whole post on this, sponsored by one of the pharmaceutical companies that manufactures one of the 14 doses of supplements and meds he takes daily, but that is for later. If you sense my frustration here by the medical description, it is my 100th attempt to explain to well-meaning friends and family WHY he seems to have boundless energy, while in fact, it is the opposite. Back to the bus: His bus driver commented that he seems hyper on the bus sometimes, and I know our friends and family make similar comments saying how he has "plenty" of energy "just look at him how busy and hyper sometimes!!" But therein is the problem most people are not understanding. The hyperactivity, the screaming, the tantrums, the business....doesn't show "all this energy he must have!!" because what it shows is the energy he LACKS. This is the OPPOSITE of energy. It is not enough energy to function normally and be humanly efficient and in control. It is just enough energy to obviously keep him living, but also just enough to make things crazy. I hope that made SOME sense. So like Dr. Koenig was sharing, while we now know he has horrible anxiety and we are trying a med for it, since he does not have the energy necessary for his brain to control it at all, the med may or may not be helpful, it may help sometimes.......

Which leads me to this: A larger, more physically mature Garrett, if he gets there........are the girls going to be safe? Will he be able to control urges.....Oh I cannot keep going there. Yes, I know he is growing some and making some progress, but it seems the mental challenges are getting worse each month, the hitting, the hitting himself, the outward expressions of his frequent frustration...they are all getting worse over time. Can his body handle his brain? Will I have to worry he may seriously hurt others? His sisters?

Yesterday I heard my girls getting frustrated and down on him, and when we sat down to lunch, we had "one of those" talks. I reminded them what the word PROGRESSIVE means. Actually, I asked Addie and she gave me the Webster definition almost!!! I taught the word to Ainslee and we talked about how Garrett has a progressive disease. I reminded them he may not always be with us and they needed to think about what they say and how they want to remember their time with him. No, I didn't send them under the table into a depression, but it was necessary to remind them of this because sometimes being his sibling is HELL, PURE HELL, and that's a nice way of explaining what we sometimes see. The girls sacrifice and tolerate more than most any children I have ever seen. So it was time to let them know they need to do all they can to encourage Garrett so they will have good memories and not bad ones re-hearing their cutting words. And I am the mist guitly of this. If we lose Garrett tomorrow, in a month, even years, I have lines and lines of train cars loaded with memories I wish I could erase...of popping him, thumping him, raising my voice at him, ignoring him, giving up on him temporarily...all to try to get SOMETHING to make sense and work for discipline. So this speech was just as much for me, and I shared my shame with them I reminded them of how Jesus expects us to treat others and how Garrett does NOT choose to act the way he does when he loses his noodles. They both took it well and I hope I never have to have that conversation again, but it was time. I did notice they were more responsive to his needs and his questions. Addie was kind to get his things together for AWANA (a church club they attend Wednesday nights) and then Ainslee surprised my while I talked with my dear friend Lisa via phone, by changing Garrett's diaper, getting his clothes off, his jammies on AND putting him to bed. WOW!!! When the girls are "on" with Garrett, they are the best big sisters he could have, but he makes it very hard for anyone to WANT to be "on" for him sometimes. Thank GOD for those angelic moments we still get with Garrett, and I have always commented, "He is lucky he is so cute!"

God promises us eternal life when we just believe.....even tiny faith. This life is but a grain of sand, a blink of an eye, one second standing in line at Wal Mart (that's for you, Lisa M.!!!!). Oh how these blinks, seconds and grains can seem so long, so big. But that is God's promise. He doesn't promise a life of luxury or comfort or peace here. So he isn't letting us down. But he is promising us restoration, peace and perfection in heaven. Let's cling to that!!!

One night when I asked God some very pointed questions, I received answers until I became angry and shook my fist at Him. One question was, "What about my girls?" Meaning how are they going to turn out in the midst of this mess???? And He gave me a verbal answer: THEY WILL BE BETTER FOR THIS. Whoa. Okay, Big Guy, you said it. Now please help us live it!!!



  1. Clara Leigh, you did a great job explaining the mtDNA/DNA depletion with mito. It is SO very frustrating that so little is still known about this disease and it is very frustrating to feel like you have to explain it to everyone who questions. Sometimes I want to say, "Do you think I make this stuff up? Do you think I want my kid to be sick?" I have no experience with what you're dealing with, to the degree you're dealing with it, but I have definitely noticed worse behavior from Clara when she is closer to a crash and does not have the energy to control those impulses and I notice it more as she grows. It feels like watching an out-of-control train rolling down a hill with no way to stop it. Very frustrating.

    I am so sorry you are struggling so. I prayed those meds would make things better, and I will continue to pray for you, Garret, his sweet sisters, and your hubby. There are so many unknowns in all of our futures, but especially our precious Mito babies...but their future is only unknown to us. God knows and I believe He has a special purpose for them.

    If you lived next door, I would give you a hug everyday. Consider yourself hugged from many miles away. (((hug))))

    I am still not sure about plans for the UMDF Conference. I will try to get that nailed down quickly. When I looked at my calendar, Clara has an appointment with the bone specialist in Ann Arbor that Friday...I am trying to figure out what to do. It takes so long to get an appointment I don't really want to reschedule. I may end up at the conference just for the weekend. I am SO EXCITED about meeting you in person! It'll be fun....well, as fun as those things can be, anyway. :-) I try to look at the social aspect instead of thinking about why we're really that bad? :-)

    I am praying you have lots of joy in your day and praying that Garrett the Cutie will have a marvelous, under control day at school.

    Much Love,

  2. Clara-Leigh, I love the way you open up and share yourself.
    How I wish I could hug and offer you comfort in person, but since I can't, I'm sending you prayers and hugs as I type.

  3. Thanks for sharing...I now understand better about what's going on. Those girls are amazing and you and "grouchy" are amazing parents...dont ever doubt yourselves for one moment! I pray for yall and hope yall are enjoying the beautiful weather and scenary!

  4. I don't know what to say...... except that I love you all and I wrap my arms around you all the way from here!!

  5. Clara Leigh, I just now read this post and up until now I didn't really know what was wrong with Garrett. I am so sorry that you are having such a tough time with his disease. My heart truly goes out to you. Having lost my daughter in May, I can only imagine what thoughts can be going through your mind at any given time. To know that his life on earth is short is very scary and when that time comes, it is very, very hard. Only through faith and trust in God was I able to get through Heather's death. And even now, after nine months, there's not a day goes by that I don't think of her and if there was something I could have done to have prevented it. My strength in dealing with this comes from God. Only he knows the why and I only know that I can't question him. I just encourage you to enjoy every day that you have with him, and when he misbehaves so badly, don't beat youself up over your behavior towards him. We are only human with human emotions. That is how God made us. We can only ask that God lead us in the right path and forgive us when we stray from that path. He knows our every weakness and he is there to catch us when we fall. Love Garrett as much as you can and remember this: Gary Willis told me once that our children are not ours, they are God's. He just put them on earth for us to take care of them. When he is ready for them to come home, he will call them. He called Heather home at the age of thirty-three. Who knows when he will call may be when he's in his eighties.
    Take care and stay in touch......Judy