Monday, December 27, 2010

Christmas Day=Sensory Nightmare

Oh how much fun I had shopping this year!! We scaled back a good bit, but I had to do some early preparations to ship some things from Idaho to Louisiana, and then once we arrived, we had the main gift to arrange....a Wii.

I stayed up after everyone Christmas Eve, of course, making things "just so." I relished the chance to prepare the morning's surprises just right for my three angels. I prayed for each of them as I organized their goodies and placed them by my inlaws' huge fireplace. I went to bed almost too excited to sleep!!!! The children were going to be sooooooo surprised and excited this Christmas!!

And morning came. The girls got up and came to get me, and they WERE excited, but neither had spotted their digital cameras nor the Wii. So I got to see the pure excitement on their beautiful faces as they finally realized what was there for them. JOY!!!!!

Garrett tore into his things and smiled at each one. I had spent so much time thinking of the right things he would enjoy at his level. His teachers shared ideas with me. I watched online for ideas, and I thought about what made his wheels turn. And I got those things. A soft rocket that shoots into the air when a pedal is stepped on, Stinky the talking, farting and burping garbage truck, fire truck jammies, and then family gave him CDs, a lighted disco ball he LOVED, and more great items, but it was just too much. The day was hard. As the cousins arrived later in the day, it got a little better, but most of the day was screaming and screaming and screaming.
That night we escaped upstairs in Grouchy's family's house and laughed watching all the other grandchildren play the dance games on the Wii. It was a truly fun time!!!

We put Garrett to bed and I felt I had crossed the finish line of a marathon setting a world record. RELIEF, ACCOMPLISHMENT, FINALLY........peace!!!

Yesterday was a painful day of processing for both Grouchy and me. Honestly, we feel helpless, tired and sometimes hopeless. I do not remember much about Christmas morning besides the shrill screaming and madness our son experienced. Dashed were my desires, not for it to be a perfect day, but for my child to be happy.....very happy. He cannot deal with himself.
Our girls felt it. Ainslee turned into a sweet mother hen for Garrett yesterday, and Addie became withdrawn and sad looking. I understand. They feed off of us, and Garrett feeds off of........well, who knows?

We have plans this week to spend time with some old friends from here. We have resorted to asking people to come to see us and for us to stay put. We almost canceled a visit from a dear cousin and his kids yesterday because we just didn't have anything positive to share with anyone. Garrett is getting worse in the cars now, so traveling and having him hit his sisters, scream, tantrum while someone is driving is not safe or enjoyable for anyone.

But there's this weird, somewhat new emotion I am having, and I think Grouch feels it too per our talks between screams yesterday. We have never resented friends or strangers with "normal" kids. But now when we are somewhere with friends or family and we leave AND when people come visit and then leave, I feel this very odd, new emotion. I feel sad because when we leave or they leave us, they can return to life without us......normal.....their usual routine.....peace (or as much as people with kids can have)....basically, life without our child's screaming, tantrums, quirks, worries. It hurts. It really, really hurts. Maybe I feel this because I wish I could escape, drive away, leave "us" and walk away saying,"Man, I am glad that's not my life!" And I can ensure you that's exactly what I would have said if I were on the outside before I had Garrett and even now!!

No, I am not walking away from this. I can't. Plus even is I wasn't married to the most amazing man in the world, I could not in my somewhat right mind leave another human to deal with this alone!!! However, after the crying, bumbling mess I was all yesterday, I think he might rather go this alone!!!!

This Christmas was one of reality, love, and I hope some form of deepening our faith. Today feels a little better. I slept between Addie and Ainslee last night. We do that when Grouchy is away for work, but last night they begged me to snuggle, and I did....all night. Usually they retreat to their spots on the bed, but last night they wrapped their little warm bodies all around me and stayed that way all night. And that hurt, too. I know they are not getting the me they deserve. SO I used their sleep to love on just be there and pray. Pray for normal? No. Prayed for whatever God can give us to help us do whatever he wants us to do with all of this.

My prayers and thoughts go out to my mito friends who have little ones inpatient or sick today.
May God send a better year for everyone!!
And may we work really hard to acknowledge our blessings, even the teeny-tiny ones!!!



  1. You have such a wonderful way of putting my feelings to words! I'm sad though that you are traveling this path too!!

    We have family Sunday lunch. My grandparents, parents, brother and sister in law and 8 kids! It is like thanksgiving every Sunday! Our coping mechanism has become divide and conquer. When Asa starts to lose it one of us takes himto another room. If that fails Barry will take him home. It is a more calm situation but it is almost more painful to have a piece of us missing. We do this for school play, church get togethers, movies, eating out! There are just a handful of activities our whole family does together. More likely it'll be one parent and Asa missing.

    I've wondered if weighted blankets and deep pressure would work for Asa. We've also started some listening therapy, a cd with warped, crazy sounding music that somehow stimulates and relaxes at the same time.

    Thanks for sharing such personal, raw emotions!

  2. Hey CL.
    I so wish y'all didn't have to endure this - and I mean all of you. Garrett must be so confused and upset, too, just like you are....I hate it, that it can't just all be "normal." But you are doing the very best that you can, and that is all you can do!!! No one including God expects more than that! And don't worry, your girls KNOW you love them - you show them every day....
    Love you girl,

  3. I could feel your emotion on my skin as I read your words, CL. Wishing you continued strength as you navigate days ahead...

    Your family is lucky yo have you,


  4. Great life-saving causes are invented when people speak out about a threat to a loved one's health and happiness. That is why I am so very proud of Oscar and Clara-Leigh and all of you brave parents who share your thoughts, emotions and perspective with the rest of us. NEVER be silent. And, NEVER give up; not a one of you. WE NEED YOU!