Sunday, February 27, 2011

Proud Momma!

Today after church Garrett went to his sitter and attended church with her and her family while Oscar and I had the wonderful experience of taking the girls to a local high school where each child in the 4H Horse Club had to make a formal presentation or speech or demonstration. Ainslee,8, did hers with her little pal Caylee, who lives on her ranch down the street from us. They did theirs on Arabian Horses. Addie did her own, all by herself, with a Powerpoint presentation, on horse behavior. MY GIRLS ROCKED!!!! They had never done anything like this!!! The presentations had to be three minutes long. Grouchy and I filmed them, but we have to get the files down to a size we can actually upload. I grinned so large that my cheeks hurt!! Honestly, these kids blew me away!!! I am so incredibly proud of my two daughters!!!! Now the hard part is convincing them to compete in the county presentation contest, which, our leader tells us, is WAAAAAY less stress today with lots less people to watch!!! I am working the bribes now and we have until 5 pm tomorrow. I'll let you know what happens!!!

On another note, our hearts are so heavy with the news of another Mito child going to be with God way too young. Also, I have not heard any news from Cooper Knight's family in a couple of days, so I am praying things at their home are going well and they are enjoying the precious days they have left on earth with Cooper.

For anyone who read my last long post about my anger towards God dealing with all of Garrett's struggles and suffering, I want you to know I spoke with our pastor today, and tomorrow I will be calling his office to speak with one of the administrative staff to get the list of local family counselors. Grouchy and I are open to working with a counselor, and we know the girls can likely benefit from counseling as well. I was thinking about it today. Of course Grouchy and I know that there is a huge weight in our hearts regarding Garrett's prognosis. But Addie and Ainslee.....they have heard it. They have heard what is likely ahead. They deal with the mess of this disease daily. And it has to take a toll on them.

Prayers to the Knight and Agnew families. And as always, we remember Missy Knight and family as well as our dear friends the McAlisters.

Godspeed, and I promise photos are coming soon!!!!
Clara-Leigh

Prayers For The Agnew Family....Sweet Maggie

Today, please pray for the Agnew family. Their precious Maggie died in her mommy's arms last night. Maggie had Mitochondrial Disease.
Make sure to hug your little ones or big ones one more time, answer that one more question at bedtime, grant that post-lights out "one last drink of water or potty break," and never, never take time for granted.
Maggie fought so hard for her short two year life, but we will always remember that precious little face from her blog:
www.hopeformaggie.blogspot.com
Never stop praying for this family. They will always need it!!!
Godspeed,
Clara-Leigh

Friday, February 25, 2011

The WAY ups and Way downs.

Before you just read on tonight, humor me by participating in a little mental exercise:

1) Imagine the very highest high you have ever felt in your life. Your most awesome moment in life. Might be getting accepted into a certain school or graduating or maybe marriage day or the birth of a child.... Whatever that moment, choose it now and imagine it like you are there right now. Get back onto that high and stay there for a moment...........

2) Now, let's take it the other way now. What's the lowest point you have ever been? The rock bottom, very worst. Hold it there for a few breaths.......feel it.....be in it.....hate it....

Now go back to #1, then back to #2.

Again, back to #1 and right away, back to #2.

Repeat.

Repeat.

Repeat.

Welcome to my world. I live that every day many times.

Today we took the whole family up for a day of skiing. Garrett had been skiing a couple of times and seemed to enjoy it over an hour each time and last time was even turning and stopping and liking it tons. Today when we got up the mountain, he asked to go in the "playroom" instead of ski. Keep in mind the playroom costs $60 for the day, and it ends at 4 p.m.,and we got there at 11 a.m. My dear friend Andrea can keep him all day, charge less, and I KNOW he is being loved like he is hers all day and rocking out watching himself on the television as he dances in front of Andrea's video camera. But we decided that was fine...it's just the cost of living with Garrett. Grouchy and the girls and I had such a nice time riding three different lifts and enjoying beautifully perfect conditions on the slopes. At 4 p.m., on the dot, I picked up Garrett and he asked to go "ride the left," which means ride the lift. I reminded him we had to ski down after we ride the lift, and he said he wanted to ski. He was a little whiney and was asking for a snack. He got a snack but dropped his plastic baggie with his lunch sandwith leftovers, and while I thought a lady had placed it in the garbage and I told Garrett and he COMPLETELY lost his mind, the lady in fact was running up behind us to give it back to Garrett. SO Garrett was off going into the weirdness, but he seemed to be so happy going up the lift until it was time to get off and he got upset that we couldn't ride the lift back down. We got off of the lift without falling, and while he began whining and trying to just fall down all the time, my sweet little girls, Addie and Ainslee, came skiing up behind us to encourage their little brother. They really are amazing, and they are growing up so very fast. Garrett will likely never know how great he has it with these two girls as his sisters!! Anyhow, he just kept falling on purpose, then lying on the snow whining about wanting to get on the lift, get a snack, and get back to Dad. SO I told hinm to just ski down and we would be there. He would make another fall and whine. Then I would take a deep breath and remind him we were on the way to Dad and we just needed to ski to him. Then we would wipe out on purpose again. Look, he even turned a few times and stopped once....BEAUTIFULLY and could have skied down any green today at many lifts....but NO!!! I was losing patience now. This time when he fell, I counted to five and remembered I had M&Ms in my ski pants pocket. To took my mittens off and got them out to give him some and tried to put them in his mouth since that would be hard for him with gloves on. Keep in mind we are in the MIDDLE OF A SKI SLOPE.....a bunny slope, but STILL!!!! He got mad he couldn't "HOLD DA BAG!!!!" UUUUGGGGHHHH MISSING THE STUPID POINT, AREN'T WE????????? I put the candy away and grabbed him by the back of his backpack/harness thingie and helped him back up. I teased that I would ski away without him, but that didn't work. He was helpless and cannot get up on his own NOR get his skis off. I picked him up again. I fussed at him in a stern voice thinking I might jolt him out of this funk, but no luck. He told me he doesn't like me. Ouch, really didn't need that just at that time! Started down and all he would do was fall on purpose. I finally decided I had to leave him or I was going to hurt him running over him or just hurt him......SO I left the ropes hanging out of his harness, took off his skis because he screamed he wanted to walk down, and I took off skiing the rest ofd the little bunny slope with his skis over my shoulder. I skied past Grouch, who was waiting to video us skiing TOGETHER.....which NEVER happens....very, very few photos and videos of us together, ever, and here was our chance!!! But nope. As I passed Grouchy and kept going without looking back, I loudly stated that "our kid is completely $^#%ed-up and there is nothin' we will ever be able to do about it!!!!!!!" And yes, I meant it. NOTHING makes sense. NOTHING is consistent, and it's completely unfun for everyone. I know Garrett doesn't want to be a pain or cause pain, but he has no ability to control it. SO I wasn't mad AT Garrett, but I was beyond angry...with something, someone.

I threw Garretts skis down by our locker in tears. I don't think I have ever felt so completely beaten. I know it wasn't so huge that my son didn't want to ski, but it was a parallel to everything Garrett....every bit of the weirdness of our life with him. The yes and no and screams and hugs and disobedience that, well, we are realizing isn't so much disobedience as much as it is inability to control anything, including behavior. Garrett is a prisoner to a body running out of gas......and time. What do we do with that? I became so low that I decided God was to blame. I mean, he made this kid. So what, he screwed up????Seriously, you Big Guy who made everything and is PERFECT???? If God is such a "father" to us, wouldn't he love us enough like a father "should," according to the Bible's parenting guidelines, the how would these things be allowed. SO it's God's will for my son to either live a life with this weird mind and frustration with the plan B being he dies very young. Really, God, you there now???? I was PISSED!!!! And it didn't blow over. I have been angry at God and our circumstances for some time now, but it would usually blow over or diminish with prayer. I was WAAAAAAY past that. I told Grouchy on the drive down that I was going to hell. I was hanging up the Christian hat because it didn't seem to have meaning or purpose anymore. I was going to hell and I already had a lot of experience dealing with it because I was already partly there with the hell I am living in on earth. And I meant that. I closed my eyes on the drive down as Grouchy drove, and I thought long and hard. And I just got madder. I decided Grouchy could keep the church facade ongoing, taking the girls with him to church and doing "all that stuff" that no longer held water for me. I could always be sick Sunday morning, right. I already just drop them off Wednesday nights for AWANA. I could stop listening to any Christian music. And I would save time not praying, right? SO since there is NO GOD, and my current hell is perfect enough proof for me, I don't need to waste my time, right??? But then something happened. I realized that if there is no God, I have no one to be mad at. I have no one to blame. I have no one always beside me to pray and whine to. So I discovered that even in my darkest time yet (I say YET because we KNOW we have much, much darker times coming in our child's life...and death) that there is a God. And I don't know how NOT to talk to Him. I cannot ignore Him if I try. He is always there kicking me, pulling on me, encouraging me, and keeping me from doing stupid things. So God by default. He is still here, and I would rather believe and be wrong than NOT believe and be right. I know that's not strong faith, but it is faith.

And then tonight I read a blog from an online friend about her son and what it meant for her to matter-of-factly tell another mom about her son's Mito and how it works and how the government offers no help to their family and how her child would die. And the other mom was crying, asking how she makes it through, and she talked about how her sweet son shows God to so many and that God is how the mom and the family has strength to keep going. Wow, that hit me. I still cannot feel it so much now, but I hope I will again. This mom's blog reached into my soul tonight and helped me look forward again.

These ups and downs are copletely insane. I told Grouchy that some days I think I would rather live in the bottom, the dump, and never come out because when I am out and on TOP really enjoying something, the bottom is still always right there, and usually Garrett takes me there very fast....or a Garrett situation. SO going on a girls night or trip alone somewhere is almost not worth it because I know I have to return to "our new normal" as Grouchy calls it. It's way screwed-up compared to average normal, but it is our normal. But if I go away, I have to come back. Of course I come back. I love my husband and kiddos, and I would not desert them. But I have thought about it!!!! The top doesn't feel worth it because it's so depressing to pass through the middle and past the middle to the down....way, way down. I even mentioned to Grouchy he could move somewhere that he can farm and live his dream he has recently realized is so alive in his heart, and Garrett and I would live in an apartment somewhere in a big city near a good mito doc, therapies, special school for Garrett, and we could have them come visit us. I was serious. Let me take on the misery and appointments and I can just focus on Garrett. ONLY Garrett. They don't NEED me. I am dead weight now, seriously. I am emotionally shipwrecked, not capable of keeping our home nice, everyone fed AND take care of Garrett's behavioral and physical needs every day without being a complete WITCH by 4 pm every day. So many things happen that are so discouraging. SOOOOOOO discouraging to me. I think Garrett is making progress, then he will just scream out in repetition. I will see him help with something and notice and feel like he is making good progress, then he will just start repeating something weird over and over. I will see him hit Addie, ask him not to, see him hug her and feel like that might be a glimmer of hope, but then he will hit her again at that moment. Over and over he will hit her. And she just slowly starts to cry and look to me because she, like I, has learned it doesn't make sense, punishment won't work, and we are screwed.

I know if you are still reading, you wish you could slap me and remind me to "count my blessings." I have had many, but they are over. Reality is here and it is cold and harsh. Until this disease likely takes my son during his childhood, he is stuck like this: miserable and taxing the hell out of this family. We love him. I would die for him. I would die twice to make him even average.

Oh, and we got a Vineland Adaptive Behavior test done as we move on trying to get him into the Medicaid program, and for all of you who say,"Gosh, he looks like he is so normal!! He is doing normal play things and can talk and walk and even run now," know he scored below average to low for EVERYTHING. Next month we have the neuropshchological evaluations done for 6-8 hours over two days, and there they will confirm that Garrett will not ever be normal or "catch up." He is stranded in this crashing little body. Unlike so many others who physically suffer as the Mito progresses, our child's brain is very affected too. And it hurts him, it hurts us, and it has me swimming in WHY>

Godspeed.....if God is there tonight.
Clara-Leigh

Wednesday, February 23, 2011

Not Normal

While Addie and Ainslee were in church tonight for AWANA, Garrett wasn't 100% so he asked to stay with me, and he had to go to WalMart with me. He loves any store with shopping carts, so I thought it could be fun. Shoot, we had 1 hour and 45 minutes to get a medium size shopping list filled and then we could just look around and play with the toys!!

Garrett was AMAZINGLY well-behaved. He didn't take off across the parking lot like he sometimes does without me. He stayed with me as he pushed his cart. He didn't mow over any customers with his cart. He started asking to go see toys, and I was starting to think, "Man, this has been so incredible! He looks and acts so normal here tonight, and it is just a relaxing time for us both to just enjoy time together! How cool is this???"

Then, it happened.

Garrett skipped a dose of ExLax a couple of nights ago, and he has been needing to poop some more. I had no idea WalMart would bring it out in him!! He starts stopping the cart every 20 feet and screaming, "I AM POOPING!!!!!!!!!!!!!" And I mean screaming....not yelling or saying or shouting...SCREAMING!!! He must have done this 5-10 times before he stopped. People were staring. I honestly found some humor in it, then ignored it as there was nothing I could do about it. He is still 100% in diapers, and we do not see that changing too soon. He doesn't want help. Mention a toilet and it's like you told me Krispy Kreme stopped making chocolate covered creme filled donuts. But he needed to scream it out. Once we got to the toy aisle he didn't do it as much, but it kept happening some. And all that over a very, very small amount of stool. Oh well.

Tonight just goes to show the range of experiences we have with our little man. The highs can come from the most simple, daily things that to average people seem mundane or plain un-fun (like going to WalMart). But when I reach one of these highs, like Garrett behaving well and staying with me, not running into traffic, I soar like an Eagle, thank God, celebrate the bursting in my heart with joy!! But then reality. Behaviors that are honestly, very retarted looking. I know, that's not a PC word, but it's what it is. The meltdowns. The repetitive questions about the same thing. The anger and rages. The way he loves the baby toy aisle at WalMart at age 5 yrs and 7 months. And my crystal shoe shatters. Reality is back, and I crumple into bed next to Grouchy and say, "You know, we are in this for all of our earthly life. There's no fix. There's no magic pill. It is our reality. I am scared. I am angry. I am sad. I wish I could know my kid and he could know me like we were "suppose to." And no, I don't think God made him like this. That would completely go against all the things I have been taught about God."

So on the lighter side, I text messaged Grouchy, my mom and my three awesome sister-in-laws about Garrett's screaming that he is pooping in WalMart, and we all had good laughs about how maybe more people would love to poop in WalMart or ON WalMart and let everyone know!!!

Godspeed, and please pray for Cooper Knight and his family tonight.
Clara-Leigh

Tuesday, February 22, 2011

Heifers Are Here!!!!



Addie and Ainslee's 4H heifers arrived yesterday courtesy our sweet friend and awesome ag teacher and FFA advisor, Lori. She brought us two beautiful Polled Hereford heifers about a year old. One is more orange, one more red. They weigh around 800 pounds....we think, and they are not tame now but are super-curious! Unfortunately, I was at the OT, PT and pediatrician appointments yesterday when Lori brought them, so I missed the excitement, but Grouchy says the girls were so excited!! Last year Ainslee wasn't old enough to show and Addie showed two market lambs. While she had a very broken arm most of the time leading up to the show and didn't get comfortable with her bi-polar lambs, she was actually pretty emotional about the fact they were sent to slaughter after the show. That's how meat gets to the grocery store, right?? But this year with Ainslee old enough to show, Addie wanting to show but NOT lambs, the girls asked to get heifers so that we can keep them, breed them and raise a herd here at our ranchette. So here are a couple of photos of the heifers. Their names are Beth and Adelaide (pronounced like the George Strait song). Not sure which is which, but here they are in their new pen trying to figure out my camera!!!

Monday, February 21, 2011

OT and PT Evaluations Today

Our day went from a ski trip to turning around 3 miles from the house because we realized it would be a crowded ski day since it's a holiday, Garrett and I are snotty, and we had a tractor and Addie and Ainslee's two 4H heifers being delivered. Once back home, I got the girls' homeschool lesson going and started scheduling our new appointments including OT, PT and speech evaluations as well as his neurophycology appointments. When I called the therapy office, the receptionist said I could come in about an hour for both physical and occupational therapy evaluations..SWEEEEET!!! I LOVE IT when things get rolling that quickly!!! Our insurance has been wonderful granting us many visits and evaluations for PT and OT very quickly.

The PT was a very, very kind lady who was good with Garrett. He tried to blow her off and follow his own agenda, but she got him to cooperate pretty well.....for Garrett!! She thinks that she only needs to see him quarterly to keep an eye on his skills and his skinny body and to keep a watch on his foot braces (orthotics). He is about to outgrow the length of the current ones, and they are very large for his foot in diameter.....not sure why....he hasn't lost weight, but his body has changed a good bit...getting tall and skinny. She recommended getting him into a preschool gymnastics class to help his upper body strength. She realized, after spending a few minutes with him, that clinical therapy isn't going to work for him. She also wants us to keep him swimming at the YMCA as that is so good for his entire body. We are planning to get him back into swim lessons soon, too. She mentioned t-ball and I am still chewing on that and trying to stop rolling my eyes....I just cannot imagine how to get that all done!!! We currently have him swimming two nights per week and the gymnastics can work out pretty well for us to coincide with Ainslee's gm schedule. The PT will be talking with the OT to get a plan together with her and give us more ideas. She loved that he likes to push his wheelbarrow as that takes his upper body to balance. She likes him picking up rocks with me and swinging on the trapeze par on our swingset. We just have to keep accidentally getting therapy in on a daily value!!

By the time the PT was done with Garrett and the OT took him, he only had about 15 good minutes left of tolerance. She sat down to discuss with me after the PT and I talked and Garrett was beside himself ready to LEAVE!!!!! He started with a clear, runny nose this morning, but was getting worse and telling me his ear hurt.....great. He was screaming, banging on the door, begging to leave and all the OT could say was that he is very behind and that she needed to see him. I tried to listen past Garrett's tantrum and finally, in tears, excused myself and just yelled, "If you would like to talk to me about him, just call me sometime and we will try to talk then!!" And I walked out. Hmmm.....I will hold my breath!!!

I drove across the street to beg for an appointment with our pediatrician for today, and of course she is out today, but they squeezed us in about 2.5 hours later for an appointment with another pediatrician there. Garrett and I went to the feed store to get corn and barley for the heifers and cruised the feed store with the shopping cart.....Garrett's favorite!! We then hit a couple of thrift stores, a quarter helicopter ride deal outside a grocery store, McDonalds, his favorite, but he choked on everything and just got more upset in the car, and finally to the park across from the YMCA. He had a very nice time playing. He has had our Sony portable DVD player in my Yukon the last couple of drives, and that is working to help some. He just keeps wanting to switch DVDs, which can make for hazardous driving and very scratched DVDs when he throws them and drops them on the floor. If I could just get him to stick to one movie at a time, I think the DVD player might be a good vehicle pacifier for him. Finally, the pediatrician looked in his ears and they were fine. Garrett let the LPN check his pulse ox...that little thing they put on your finger.....first time he EVER let anyone do that!!! And then of course, the machine malfunctioned....figures!!! We have no idea how much oxygen this kiddo is getting because he will not let us check it when he is awake, but maybe that is changing! Dr. said he has a virus and wrote Nasonex for him, which has worked in the past and told me to try a children's DM medicine over the counter. I handed him the handout from Dr. Koenig that is an interdisciplinary care information sheet about his Mitochondrial Disease, and the doctor told me to be sure to call if he gets worse. My concern right not is that he is not eating or drinking at all, really. He had 4 sips of a milkshake, spit out a chicken nugget, and had about sips of his favorite chocolate soy milk tonight, but he did eat a small bowl of grits. He is sleeping well now on two pillows in his big boy bed.

We have two neurophysychology appointments set up as of today. The first one is on the 16th of March and is 3-4 hours...I have to laugh out loud at that...I cannot imagine how we can let that happen!! Then we have another one just like that two weeks later.....still laughing!! They better have some sort of reeeeeeally entertaining dog and pony show for us there to keep him in any building that long!!! I hate to feel so pessimistic about these things, but learning more about Mito and just re-reading the information I have about Mito I see that his mental and physical issues do not stem from what most people's mental issues stem from, things like chemical imbalances, hormone problems and such. He does not make enough energy to fuel his body. Period. So we have him on two meds for mental issues, Risperidone and Zoloft, but we cannot tell how much they are helping. Talk to people who take Zoloft, and you will hear them (adults or parents of kiddos on it) say that it makes things so much better or does nothing. But for Garrett, we just can't know if it can help because the problem isn't the common problem of a disconnect or chemical problem.....it's a lack of energy. So it might be helping, might not, but we have a hard time telling. So now as we move forward getting help with his mental issues and behavioral issues specifically, I fear there isn't really something that will fix much or even be improved. I will try. I told my mom and Grouchy I would get up every morning and run a marathon or cut off a finger, or well, ANYTHING to get this little kiddo help he needs to straighten things out. I seriously would. But I am sensing that none of these typical approaches can make a huge difference because the root cause being energy. Sure, we will try. I beg God something will help.....even a little here and there. How do we best get him to listen and obey and not run into traffic and across parking lots with no care for our voices? How do I get him to consistently obey when I ask him to pick up something, have a diaper changed or change activities? How do we keep him from freaking out at home when he isn't at school or in a rigid routine? How do I get him to stop screaming that he wants to hit himself and then hits himself when we fuss at him about something or tell him to stop doing something? How do we best stop his hitting and kicking his sisters, our cars, the walls and doors???? And there's more but my cold meds are kicking in and my eyes are crossing.

If you are still here at the end of the marathon post, you deserve a medal!!

Please pray for the Mito families who are inpatient and at home with hospice, clinging to life tonight. As of tonight, this disease is progressive with no cure. Please consider donating through www.mda.org, www.mitoaction.org, or www.umdf.org. Science is trying. Children are suffering, and if we all pitch in, we can see treatments in our lifetimes.....hopefully.

Godspeed,
Clara-Leigh

Sunday, February 20, 2011

Needs More Rest??????

Today I purged and organized Garrett's medical information binder. I really do not need the orders for blood work from four years and 4 hospitals ago, or at least I need them archived, not being toted to each appointment we have. I re-read lots of information, and what I keep seeing over and over in Dr. Koenig's (mitochondrial disease specialist) information in letters for his medical team and his teachers and support staff is that mito patients need MORE REST because their bodies are not effectively producing energy. Garrett has been skipping naps for some time now. He has skipped over a month because of being out of his crib and the climbing out of it over and over and over during naptime while he was still using it. I have put him in our bed for three naps lately, and he fell asleep in about 3 minutes and slept almost two hours both times. I honestly cannot say I see improved behavior after naps, but I wonder if he is just always stalling out. Some mornings now he even comments on being "tired" just in the middle of the morning. Then again, not sure he means what he says. We have lots of conflicting statements comign from him now:
I love you...I don't like you.....I hate you....I don't like school...I like school....I want to go outside but then two seconds later NOT!!!! SO there's a communication issue too.
Tonight, Grouchy said, "You know, I think he hurts a lot. I think he feels bad most of the time."
Geez, what if this is the case?
What if my little guy lives in his own hell, his body and brain not able to receive what they need....no, wait, that IS what Mito is.......whoa, bad sentence. Sorry Mom and DiDi!!
So we might run an experiment and try to get him to bed an hour or two earlier and reintroduce naps into our family life...I know I can use them..HA!!
Blessings to all and please say special prayers for precious Cooper Knight and his family tonight. Cooper is trying to make it home from the hospital to.....well, enjoy his last few days with his siblings. It just shouldn't have to be like this.
Godspeed,
Clara-Leigh

Friday, February 18, 2011

My Boy Skis!!!!!

Today I took Addie, Ainslee and Garrett to ski before we picked Grouchy up at the airport from his two week work trip. I was not sure if I could handle Garrett on skis by myself, but I prayed about it and it worked!! I even got him to cooperate with his backpack with the handles so he could ski ahead of me. He did soooooo much better today than last time because I put the Edgie Wedgies on his skis.....straps the hold the front ski tips together. This gave him enough stability to learn to stop and even start to turn some!! AND we rode the lift on the bunny slope SIX TIMES and he was a real champ!! Yes, it's a workout for me, but that goes along with my theory that my live is an athletic event!! Here's a clip of Garrett skiing and of him clocking me with a few snowballs!!!

Godspeed, Clara-Leigh




video

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Wednesday, February 16, 2011

Haircut Dance by Garrett

Garrett was due for a haircut, and the only way to do this is at home with DJ Heavy G at the iPod Home spinning the tunes. After the haircut (which involves screams, jumping, frothing at the mouth and numerous attempts to run away), I left the bathroom for a few minutes and returned to see the beginning of this dance deal, but then I left to get the camera and got lucky enough to CATCH him in the jive. Hope you enjoy this like we do!!!! My cheeks hurt from laughing each time I watch it!! Godspeed, Clara-Leigh (who has NO dance moves whatsoever!!!)

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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!!!


Godspeed,
Clara-Leigh

Tuesday, February 8, 2011

Progress.....

We had to tell Grouchy and my precious mom goodbye last week. Very sad to see them go, but that means I can get everyone back onto a routine and hopefully get some homeschool lessons rolling. We are about half way through our school year as far as completed lessons, but we have been taking lots of time off with holidays spent in Louisiana and lots of company. No complaints though, because those things are part of why we LOVE to be able to homeschool!!!

A couple of pretty great things have happened in Garrett's life lately, although I will not share the new, frustrating behavioral concerns in the is post. First, he started climbing out of his crib about a year ago, but I talked to him and told him he could get hurt climbing out, and that was that. Well, last week he started it again, and one night he said he was "ready for my nap," and next thing I know it is very silent and he is missing!! Addie, Ainslee and I searched the house, and I was about to call my mom at our guest house to see if he had wandered over there, but one last time I checked his room and he had crawled INTO his crib and GONE TO SLEEP!!! Little booger!!! SO I took the front section off of his crib, making it more like a day bed...a BIG BOY BED, and the first couple of nights he woke up a few times and turned on all of the lights in the house and began playing with his wooden blocks making "tall buildings" and then knocking the buildings down on the HARDWOOD FLOOR!!! Talk about jolting me from deep sleep!!!! Last night was better. He woke up once, too early, then I explained for the 50th time that he could get up when my alarm went off, and he stayed in bed until I got him up!! YAY!!!

Then yesterday morning I got an email from Dr. Koenig's nurse that Garrett's urine had protein in it when it was tested two weeks ago and they she wanted that to be repeated here in Idaho. So we scheduled to drop by and pick up a cup and the pee-pee bags we previously used to collect his urine. It looks like a baby bottle liner but has adhesive and an opening around the top to stick to his....BOY that has to HURT!!!!! He HATES them!! I picked up the "stuff" and headed to the local McDonalds to let the kiddos get lunch and play in the large, nice, new, clean play area there until he peed. I tool him into the bathroom and explained what we had to do, and he told me he would pee in the cup this time. Last several times he would not. SO he tried, but no luck. We gave him more water and let him play, and the next try, he didn't pee, but he had some great farts and thought that was HILARIOUS!!! After entertaining himself while I squatted and held the cup, we left the bathroom, gave him more water and let him play. Try #3 he had even more gas and could hardly stand up because he was laughing so hard. He almost knocked me down onto the bathroom floor falling into me....GROSS!!! Finally, try #4 produced fabulous, award-winning gas AND a little urine...MISSION ACCOMPLISHED!!!! We returned the sample to the office and then headed to the YMCA to play for the while before piano lessons.

Today the pediatrician called to check on some referrals we are working on for neuro-psych and PT, OT and speech, and she said the urine had some protein and trace blood. She faxed everything to Dr. Koenig and started working on referral for a nephrologist, thinking that might be added to the list of appointments we need to make. Dr. Koenig will let us know the plan soon, I am sure. I think this may not be a big deal, but sometimes Mito affects kidneys, and I think I have been in serious denial about his diagnosis since we received it in June. This is a progressive form of Mito that we are dealing with. He only has 53% of the mitochondrial DNA he needs to function, and with a depletion, that means he was born with 100% or close to it, and now it has been depleted by about half.....time is our friend and our enemy. Not sure if I am going to come out of this denial, but I think I have to. This might be the beginning of that part of it......I am sure a blog on that is brewing.

Garrett is still enjoying school and is very well behaved there. At home.....different story, but we have to all go through some counseling/educating in the near future so the whole family can best know how to teach and handle him.

Went skiing with the girls today and had such fun. The girls had a lesson and I listened in. Then I got to go up a few times with the instructor after lunch and work on more green slopes and a blue...FUN!!!! Our instructor, Bill, is one of the many wonderful adults at our church who work in children's ministry. He teaches the girls and they love him. He was so wonderful with them both!! We plan to get more one on one help and all get better and learn to ski the WHOLE mountain!!! We may go back Friday and take Garrett. We will see how brave I feel then!!! Might wait til Grouchy is home before that happens!!!

Godspeed and please continue to pray for our inpatient Mito friends and our dear friends, the McAlister family.
Clara-Leigh

Wednesday, February 2, 2011

Strep, My Stranded Mom and Ski Adventures...All Here At the Same Time

Wow, what a wild return from our Houston trip!! My mom came back to Idaho with Garrett and me on Wednesday, and Friday we took everyone up the mountain to ski. As I blogged previously, Garrett even got to put on skis for the first time!

Then on Saturday, Addie woke up feeling crummy. We went to see the nurse practitioner who suspected Strep, so we got meds. Next Morning, Sunday, Ainslee had the fever and sore throat. Started her on it. Grouchy started feeling wiped-out, and since he leaved for another work trip to the north slope of Alaska this coming week, we got him some drugs started too....all legal drugs, mind you! Garrett seems to be fine.....YAY!! But now my mom has an upper respiratory funk. So sad!!

Yesterday Ainslee was much better, so Grouchy and I kidnapped her and took her up to ski. She and I only skied for a few runs, but Grouchy got a 2 hour lesson from one of our hitchhikers...I will blog about the hitchhikers later. It is very fascinating!!! Grouchy was skiing down cliffs before we left, and thank goodness I didn't see it or I would have had the vapors and passed out!!! We enjoyed a day focused on our middle angel, Ainslee. We all need that sometimes!!

SO today Garrett is in school, Mom offered to stay here and not ski since she has a cold, and we are going to take the girls to ski!! Grouchy leaves tomorrow, so we are going to blow it all out (except our knees, of course), today!!! Garrett will get off the bus and go to the guest house where my mom has a pillow fight staged for them....one of Garrett's new favorites!!

Oh, and my stranded mom!! LOVE IT!!! She was planned to leave yesterday morning to return home to Alabama, but seeing how her flight was through Chicago, DIDN'T HAPPEN!!! He he he he!!!!!! My evil laugh!!! So she is here until Saturday....unless the next storm hits then...he he he!!!! We really want to go Nordik ski again like we did Monday, but if she doesn't beat this cold soon, that cannot happen :( So here is my mom wanting to get home but enjoying the grandchildren, and here I am soooooo glad she is still here!! LOVE HER!!!

Hugs to everyone, and please continue to pray for those Mito kiddos inpatient fighting for their lives today.

Godspeed,
Clara-Leigh