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 in it.....hate it....

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

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




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'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.


  1. I completely relate to your feelings. My little boy is 21mos. From everyone elses observations. He is beautiful and perfect and looks so normal. He is beautiful, that ill give you but without problems he is not! He yells at and screams didn't sounds at us but doesn't say a word to us. I know it is hard sometimes to see the silver lining in times like this but it does still exist. Don't beat yourself for feeling the way you are feeling. That's normal human flesh. Just remember, it rains on the just and the unjust and God is good ALL the time.

  2. Clara-Leigh,

    I am so sorry....
    You're right, this is a rollercoaster, and the highs really arent worth it because that makes the lows so much worse...

    I think you and I are in the same process or realizing that the "good" days are not signs of progress, but just good days, and the bad days or bad moments are right behind.

    I don't deal with what you do because I have just one child. I know your pain is compounded by worrying about your girls and having to give so much time and energy to Garrett that you used to give to them. Your girls are amazing, I can tell that in the short time I spent with them.

    I also know the feeling of wanting to go off alone, or just take our child and save everyone else from the pain. Tucker and Garrett really are meant to teach others.....though you have no idea what or why right now.

    I really hope that Garrett's behavior therapy and maybe a psychologist (if he's that verbal) will really help him. Poor guy is just too anxious about life and doesn't have the energy to do anything but freak out all the time.

    You are always in my thoughts and prayers.

    Be angry, you're allowed.

  3. I DON'T know what it's like at all, sweets. I can't know because I don't live your life. I can be there for you when you need to scream and rant and cry, though. I'm also glad you're going to get into counseling. I think I gave you my number. Please use it when you need to.

  4. Plain and simple:

    It is not fair for any of you.

    I am sorry that you are all dealing with so much :(