Sunday, August 1, 2010

We are home in Louisiana, finally!!

Four hour drive with plans to overnight in hotel near airport in Spokane, WA the night before our flight home.........
instead, 3 hour drive, then Garrett so out of hand with behavior that we have to stop an hour before our arrival in Spokane...blessed with condo with indoor water park..THANK YOU LORD!!

Flight home yesterday with only one layover in Denver....
instead, initial flight delayed due to mechanical problems, so missed connection in Denver. Got voucers for two rooms and meals for all 5 of us and caught flight home today thru Houston.....THANK YOU LORD!!!

A man on our shuttle bus to the hotel last night asked us to "get our child under control" as Garrett was getting very loud late at night on the bus. I completely would have honored my husband if he had choked the guy to death, but he proudly and confidently said, "Mister, my son has Autism, and if you have something to say that will help him in some way, we would love to hear it. Otherwise, GOOD DAY!"
My heart broke from its current millions of pieces into a billion pieces.

Woke up at 4:30 this morning in Denver, flew to Houston then to New Orleans and then drove home. Took hour nap, then had to show the house....repeat showing with no realtors. Nice people. Had planned dinner with Kim and family, but she had to take Barett to ER because of brown urine and chest pain while at a kids' play place....was too much for him. Her hubby and girls came over for dinner. I took her dinner and chatted and told her bye......they move to south Texas tomorrow. Sigh.......

The past month has been an emotional whirlwind for our household....mainly Grouchy and me. I think we are mourning the life we imagined, the healthy kids we assumed we would have, the dreams for their futures. Garrett's behavioral issues are escalating. The three weeks Grouchy spent with us in Montana were eye opening. He has seen "it," the elephant in the room. Honestly, right now I rarely worry about how Garrett's life may be shortened due to Mitochondrial Disease because his behavior and autism and all is so overwhelming I cannot think of much else.

I am not the person I was a few years ago. I am not the fun, adventurous mom I was before. I I am not the physically affectionate and passionate wide I was. I am not the outgoing athlete I was when Garrett was a baby. Garrett's needs completely consume me. I don't mind being his mom, meeting his needs, but I do feel bitter I am not the mom I wanted to be and was in the past to Addie and Ainslee. I just have nothing to offer, no extra energy, no positive vibes right now. It's close to depression, but I pray that it is part of the mourning process I have read about and not depression. I am open to professional help but feel I need to sit tight, get the move done, then reassess once Garrett is back in school. Things just are not as they seemed they would be.

I pray thanksgivings every morning and during the day. Maybe all of the wonderful experiencees, travels, opportunities, an amazing marriage, were all dealt to me early in life because this was coming. SO I am thankful for these things, truly thankful. I am thankful my son is alive, I truly am. I do not have any way to predict the future with certainty, but after the past month with my household, I can almost promise it won't be near normal for Garrett and our family. It will have some beautiful moments, but overall, from where I see it tonight, it just won't be nearly what we had hoped for as a couple.....for ALL of our kids. We will have to have more sitters, help from my parents a few months per year, hopefully another great church family in Idaho.......we will have to leave Garrett back....but he would rather be home playing with the piano or battery powered ride-on 4-wheeler or tractor. But it still's so disconnected, so NOT us.

Ho hum, I know sounds whiny. Maybe it is, but it is the truth.

Kim gave me an adorable little sign as a going away gift. It says:
Life is about how you handle PLAN B!
Wow, that sums it up!!!!!! I really wish I could just walk away from PLAN B and go try Plan A again. That was me.....workable, somewhat predictable, fun, energetic, outdoorsy, etc.

Sorry if I drug you down with me. We will make it. We have to!! We have little people depending on us!! Thank you for sticking this one out......promise it will get happier!!!



  1. I am sorry Clara-Leigh. I feel your pain, and unfortunately, I know it myself. Sometimes, I just wonder how it came to this! You and your family are in my prayers.

  2. Hi Clara Leigh,
    My name is Leigh, I am a friend of Missy, as well as Melissa Enis (small world, right?).

    My son Tucker got his mito diagnosis last week, and I see that Garrett and Tucker share many issues.

    I am sorry that you are dealing with "Plan B," we are also dealing with that and all of the sadness that comes with it.

    If you ever come out to visit the Enis's in the new place, let me know!


  3. Hi Clara-Leigh,

    You visited my blog the other day and I have been checking in on you, too, since then. :-) I am sorry you are having such a hard time...ugh. This stuff stinks. I truly understand and relate to grieving the life you thought you were going to have, and grieving the life of your child and the hopes and dreams you had for them. I am there, too. Still. We were only diagnosed 7 months ago, and we are not dealing with autism on top of the mito, but in so many ways, I know where you are. And I, too, am just trying to recognize all I have to be thankful for everyday. I think that might be the best 'therapy'. Hang in there.

    We seem to have a lot in common. We also have our house on the market to get ready to move cross-country. So on top of dealing with all this stuff, we are trying to keep our house "show-ready" (still not sure how to do that with 4 children who are home all the time). I know things come in threes, but 300s??? :-)

    Thanks for your's nice to know I am not alone. :-)

    I will be praying for your family.