Monday, October 4, 2010

How Do You Fix It??

Ever have anything happen in your life or even worse, your child's life that you wish you could just FIX ????? Just FIX IT!!!!!!

Let me issue a disclaimer before I vent. I know I cannot hold a candle of complaint to my friends who have lost children, parents, who have critically children or who have children who have strayed from Christ and are out of control. And I will never try to. Those pains and that suffering is worse than I can even imagine.

But complain I must. Addie and Ainslee began a weekly, one hour homeschool gymnastics at our local YMCA the week after we moved from Louisiana to Idaho. They picked out really cute leotards that came with little shorts to make them a little more modest. The coach, Emily, is PRECIOUS and very kind but firm. My girls LOVE the class!! They both took gymnastics in Louisiana back when they were very young....maybe 5 years ago because I remember nursing Garrett in the observation area. They liked it, but got bored, and I got frustrated with the incredible amount of cash it cost at that particular gym. We first began letting them take gymnastics because Addie was so clumsy on her feet and didn't like dance too much. Our pediatrician mentioned gymnastics might be a great way for her to develop and strengthen physically. Then they got tired of it and we finished the session they were in and did not return. They have asked about returning to Gymnastics many times, but with therapies and Garrett not doing well waiting around for them in a small area and not being ready to try gym, it just wasn't an option......until the move and this 10 a.m. class. They are enjoying it, no doubt, and all day long, since our new home is built on a crawl space, we hear the floor thumping as they tumble, roll, handstand, back bend, etc., over and over and over. They even took the masking tape and made the length and width of a balance beam on Addie's room's floor!! And they USE IT LOTS!!!! I know Addie isn't super strong. I know Ainslee is. I know Addie is DYING to excel in gymnastics and has the heart to do very, very well, but she just can't. It has been obvious from the beginning of the class when I watch, but then last week, Grouchy took the girls to gym without me. He came home very concerned about Addie's frustration about watching the other girls and boys and her little sister flip and swing and effortlessly contort their bodies. And Addie cannot do much of it at all. She cannot use her arms to hold her weight much at all. She cannot go into a back bend by leaning backwards, she cannot do a round off. She can barely go into a handstand, and that's very basic.......and all the time this is going on, Ainslee is improving every second right in front of Addie.

Addie came up to me this evening and was upset about this. She wanted to know why she couldn't do all the things the other kids can do. She wanted to know why life was so unfair. She said that she has the heart and desire to be an amazing gymnast, but can't. I tried to console her talking about the other gifts, ones I know are much, much more valuable than a gymnast body. I explained how that attitude and heart she has are what make her so amazing. She said she would trade all her current gifts and talents and heart and desire for physical ability. She said she wished she had a bad attitude and got in trouble all the time and could flip and all like the other children in her gym class. Her heart is broken. And ours are too, but nothing like hers.

So we want to help her find her "thing." Something she is passionate about AND can do well. We mentioned golf and tennis per her neurologists' advice. But she says the things she REALLY wants to be good in are things she isn't strong enough to do. She perks up about tennis. And yes, I know that the things she excels in do not have to be physical in nature, but at this age, that's what kids do, what her peers do, what she WANTS to do. Gosh, I just had a flashback to her soccer playing years when she was 4 and 5 and how she would take to the field with a smile, loaded for bear and tear into the ball and be aggressive and wonderful......for a few minutes. Then she would lag behind, eventually falling and crying and having to be consoled and a substitute called in. It makes sense now. She had the same trouble with Tae Kwon Do. She loved it and would go to tournaments and ALWAYS win first in her "forms," contest, the part where she showed her knowledge of movements and the steps of the basic forms, but then when she had to sparr, or fight another girl her age and size, she would start impressively, making great moves, thinking on her feet, but about 50 seconds into the 3 minute round, she would break down, lose all steam, and just cry. She would beg to quit, complain that her body was heavy and her legs burned and she couldn't keep on going. Crap. Pisses me off the more I think about it.

And she can't see that this phase of life is physical for kids, but the upcoming phases are not as much. She can't see her gift of piano, voice, the way she is sooooo kind to others, relates to everyone, goes out of her way to make people who are "different" feel okay, the little missionary, MDA fundraiser, animal advocate, good little cook and on and on and on. She can't see how shallow the physical world is.

And then she has to watch her little sister flip all over the place all day long. Addie thinks Ainslee is flaunting her ability. I tried to explain to Addie that so much of the time we have had to fuss at Ainslee while we poured praise on Addie for great behavior and attitude. Now Ainslee finally has something for which she is praised and people are impressed. But this hurts Addie because she isn't CHOOSING to sit on the sideline. I think she sort-of understood, or at least she said she did. I also tried to get her to see how much Ainslee wants Addie's praise and support.

So what now? I want to hold my baby girl and say, "Okay, tell Mommy and Daddy what would make you happy, and we will buy it, make it, whatever you need!!!" But if I did, she wouldn't ask for anything material. She would want the body she assumed and that we assumed she would have.

Her coach, Miss Emily, knows that Garrett has and Addie likely has Mitochondrial Disease. After class last week, she stepped over to Grouchy and talked to him about Addie. Addie had been visibly frustrated and beaten during the class. BUT Emily noted that Addie has beautiful balance and grace in her corner. She asked Grouchy if she could allow Addie to really focus on balance beam and let her learn an upper level routine for beam. Addie was excited and we plan to make a low beam for the girls to use at home, but that's not all Addie wants. She wants to be able to do the tough stuff, the cool stuff, not just spin and turn and jump on a beam.

There's my vent. My kiddos are very healthy right now.....considering. I am thankful. I just HATE seeing Addie's heart break, and in turn, Grouchy's break.

Recently someone asked if Addie has Mitochondrial Disease. There are a few classifications of diagnosis for Mito, and Garrett is a confirmed case, and Addie's is considered probable or likely. Labs are being run for the second round of DNA testing to try to locate the exact genetic cause of Garrett's Mito, thought to be a mitochondrial DNA depletion syndrome. Once this is discovered, that test that yields the answer will be repeated with Addie's blood, and likely confirm the same type. Odds are that she has the same type as Garrett per the genetic inheritance that would be obvious.



  1. (((HUGS lil' Addie))) I could of wrote this post several years ago about my dearest 7 yr old daughter. All she wanted was to be a little gymnast like her 2 best friends. I tried my hardest to discourage her--even though I got a lot of heck for doing so. BUT I wanted to spare her the pain of being teased, maybe that was wrong but thats what felt right at the time. In my heart I KNEW she wouldnt be to do any of it. Like Addie, Senna is considered probable, likely, possible (whatever) MITO. Hypotonia, fatigues and dev. delayed as a baby/toddler.

    She was (still is) clumsy and couldnt even do a somersault. At one time she could stand on her head and she was thrilled about it but all the bending and strength she would need wasnt going to happen for her, certainly not then anyway. She would spend hours trying to do a cartwheel or somersault. It was so painful for me to watch her every night, only ending in exhaustion and many tears. I did as you did, explained to her that not everyone can be a gymnast--AND THIS IS NO LIE! I mean I couldnt do a cartwheel if I tried! I think it takes a real special kid to do gymnastics, alot of kids dont have the balance or strength or grace that it requires to do what those kids can do--WITH or WITHOUT Mito. But I know this was her dream. AND like Addie, it didnt seem to make any difference what I said. She had her mind set. AND having 2 cousins the same age competing in Gymnastics didnt help any!

    BUT, eventually she got tired of practicing and gave up. I pushed her to focus on what she can do, what her strengths are, like ART. She was GOOD! This helped her slowly move away from the physical things she couldnt do. Sadly today, Senna doesnt like to draw at all now. I think the fatigue is one reason but maybe more that she likes to save the hand strength for texting! (ugh)

    So guess what? This year she was required to take a sport in 10th grade...I was like we go again. I mean General PE was hard enough every year, now a sport?!...She got stuck in a volleyball class...I thought NO WAY, she will never be able to run jump and compete with other girls that have posssibly been doing this since they were who knows how old!. So I discussed having her excused from PE, her DR said NO way, that she wouldnt give me a note. SO I just said, I guess youll just have to do your best...YOU know what??? She actually likes it and she says she's not the worst in her class either! HEY, not a star but I think she's glad she went ahead and tried anyway. I even think its giving her more confidence. I mean I dont think she has one girlfriend that isnt into some kind of sport! She's always had friends that were very athletic. This has always bothered her and has been a source of a lot of tears over the years.

    Sorry for such a long comment here! BUT I know what youre going thru. I wish Addie would know in her heart that everything will work out. Today may seem like the worse day ever but tomorrow may bring something new. She will find that something, heck I know the kid can ride a horse like no other, right??! Barrel racing???!! I just remember all the pics I remember seeing of her riding. Thats a real talent! Maybe those little gymnast girls would SUCK at that??! Anyway, I know Im going all over the place tonight but this post, ugh, so my life, in so many ways. AND I havent had to deal with much of this with Jack yet and he's wayyy for affected than his sister was or is. He falls and hurts himself at least 2-3 times a week at school now. Just getting around is difficult. When I see him walk away from the car with that left foot turning in, it kills me. He has such a battle ahead with his body, its hard thinking about it. He's asking me more and more WHY? whats wrong? why cant I do this or that? sigh.


  2. Give Addie a BIG hug for me. I know her heart hurts. There was nothing I could do for Senna. I painfully had to step back and let her find her way and she did. She's OK today, never a soccer star and she never fullfilled the dream of being that gymanast BUT she did OK, found other ways to feel good about herself. This will happen for Addie too even though it doesnt feel like it now. AND you need to remind her just because its difficult for her today, doesnt mean that cant change when she's older. (theres always volleyball??!)

    BUT you know all this Mom. Just want to send you lots of hugs tonight, I understand this helpless just want to FIX IT, thats what ma-mas do.
    hugs and always prayers-
    Heidi & Jack.

  3. I know your frustration. Lauren deals with this, as well. She watches her friends do well in soccer and gymnastics. She recently started ballet and so far, it has gone better. She loves that it isn't as "active" of a class. They stand around a lot and get into a "position". She is spent at the end of class, but she has been able to keep up for the most part. But, my heart has broken with her over soccer and gymnastics. She wanted it so badly!

    Thinking of you guys and praying.


  4. I'm sorry Addie isn't able to do what she longs for and I know firsthand how hard it is to have one physically gifted child and one that isn't. Both my children were typical; however, Derek excelled in all things physical. Any sport from Karate to football to wrestling he was always rated #1. His older brother was clumsy and slow. It was SO hard watching Dalen as his younger brother surpassed him time and time again. But after a few years, Dalen found HIS true gift was in computers and he became Derek's best (and loudest) supporter. I hope the same happens for your two. Hugs to you and yours!!!

  5. So sorry to read this and know that Addie is becoming more and more aware of how her body isnt cut out to do certain things as well as others. youre right, at that age its all about who runs the fastest and whos the strongest, a hard pill to swallow for a child (and parent). With all that grace and balance has she thought about ballet. Wonderful strength training for the long muscles, and she certainly looks like she has the body for it.