I think that most (if not all) parents of special needs kids will tell you that raising them is like a roller coaster ride. Sometimes the ups and downs are back to back and you want to get off the ride. Other times the ride is just cruising along like a train, and then suddenly you are dropped a million feet and you can't wait for it to even out.
Before anyone gets worried, no - we didn't get the results back yet.
I don't know what the deal is, but I have had a really emotional week concerning Emily. Nothing has happened, but I just am unsettled. I have had quite a few dreams that I won't even describe, but were horrible. And I keep having random thoughts that make me want to throw up. This morning as I was brushing my teeth this thought popped into my head - "After Emily passes away I will only have one kid to get up and ready for school. I can't imagine ever waking up and not thinking of her smile first thing. Those days will suck".
Her life is not a given. Her prognosis is unknown, as she is undiagnosed. Everyone is pretty confident that she has some sort of mitochondrial disorder besides her SCAD Deficiency. She has epilepsy and microcephaly and on and on. I have no reason to think she's going anywhere any time soon .... but for some reason these thoughts have popped up all week. Maybe it's related to a new school year? She's a second grader, and still going into the kindergarten class. And in that kindergarten class, she is smaller than a lot of them physically and behind every single one of them developmentally. Hell, she's behind any 9-12 month old developmentally. While she is awesome and I love everything about her, this is so hard sometimes. She has not made any developmental growth in the last two years. She seems stuck where she is, and it frustrates the hell out of me. I want so much for her ...
Then there's this new thing she's doing in the mornings. Her head wobbles around and shakes and she looks like a bobble head. I emailed our neurologist about it but he said he isn't concerned. I think because he referred us to UCLA Epilepsy Center, he is just waiting now for them to take over her care. I wish someone could get to the bottom of Emily! I am uploading video of her head this morning. I hope you can see what I'm talking about. It's really obvious in person. This lasts for about an hour every morning after she wakes up.
I just wish the damn results were back. If it's Ethylmalonic Encephalopathy ... I don't even know. I don't have words.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
14 comments:
I think your nervous because these test results haven't come back yet, and it could be potentially bad news. It has you all worked up. I do see those head movements. Its hard to say what they are, it doesn't look like a seizure. I wonder if its her body waking up. Her muscles spasming.
Sending peace and prayers to your worried mommy heart.
Oh I love that little giggle of hers. She is a sweetheart isn't she. Well, you know I've been thinking about this too with Samantha lately. I get so bothered because I often wonder if it's the Lord or something trying to prepare me or if I'm just going through another reality check of how life is so fragile...for any of us really, but especially for these little kids. Emily and your family are in my prayers. And hey, if we ever go down to Southern CA, can I visit? I'd love to meet you and little Emily!
I read this off my blkberry so I will check out the video online tomorrow.
As far as your thoughts...
I know what is stewing in your head, and I know how difficult it is when you are in limbo...
All we know is our little guy has a electron transport chain deficiency. We have no specifics as to his mito other than that- he has no syndromes or labels he falls under. He has seizures strictly due to his body not creating enough energy to sustain function and support the brain. It is mind blowing really. To be on this roller coaster and have very little answers.
I have *those* thoughts too...I hate them, sometimes I wonder if God is preparing my heart, other times I sob and sob with scary thoughts.
Just want you to know you are not alone...
We are all on this crazy ride together!
Oh hun!
You've got yourself so worked up, although I don't blame you, I can't even begin to imagine what this waiting game is like for you.
The head boggling thing is quite bizarre. I've seen some of my kids with CP make similar movements but at the same time they're different to what Emily is doing.
I'm on my knees praying for Emily - I think she has got a lot to teach us ;-)
Oh, I've said it before, and I'll say it again - You've got the most beautiful daughter!!
So sorry to hear you've had a tough week. The head wobbles are definitely noticeable although I have no idea what they are. So lovely to see her giggling at the TV - what a sweetie.
I hope you get some answers soon.
Big hugs.
I wish you lived here, Ben's neurologist is a world renowned neorometabolics specialist and has been able to diagnose kids that nobody else could. Hang in there...you're in our prayers.
First of all, I LOVE her shirt! So cute for school!
As for the head movements, I was thinking the same thing that Lacey was. Maybe her body....muscles....nerves....are just spasming, getting used to being used in the morning???
I have been having similiar thoughts lately, concerning Gavin. This roller coaster is no fun and some days I just want OFF! I don't want off when it concerns him.....I love him SO MUCH and I NEED him in my life, but I get so emotionallly drained thinking of the "what if's." Gavin's b-day is coming up and I always think to myself, "Is this the last one we will be able to celebrate with him?" I hate thinking like this! But, that's all apart of this emotional roller coaster ride!
I'll be thinking of you and praying! Hope you get results soon and they are good results! Love and Hugs sweet friend!
I don't really have words other than it really does just suck. It sucks to hurt for them, to worry, and then if you're like me on the other side of the "worst thing that could happen" it sucks still. We just have to hold on to what blessings these amazing children are.
I will tell you, those head wobbles brought back a flood of memories for me. I've seen something very similar before. It was how Marie first presented Leigh's Disease. I am not saying Emily's are the same thing at all but Marie's head shook like that, only then it moved to her hands and arms in this Parkinson's like shake.
I would really push the neurologist to take it seriously, of course I don't know Emily medically it just looks like what I've seen before with Marie... and I hate to even tell you I've seen it and maybe I shouldn't have...
I know your worry, you are an amazing Mom and she is such a beautiful little lady :) We are still jealous of her curls here at our straight haired house!
I hurt for you friend. Your precious girl is beautiful, the rollercoaster is hard, and its ok to want off when the hill is too fast and steep. Feel surrounded today.
Much love.
She so so funny laughing at her program. I could sit and watch her enjoying herself all day! The wobble is there and I can see why you are concerned since it is new. The first thing that pops in to my mind is a Parkinson type wobble. As far as the bad dreams I hate to sound like the voice of doom but just because you or I or anyone is in good health and Emily isn't doesn't meant we will be around longer. We have no idea what tomorrow will bring. Thinking that we do is only an illusion.
Please keep us posted. I can see the wobble, did the dr. see the videos??? Duh... I am praying that you receive answer so soon so you can either deal with it or forget it.
I hate the roller coaster ride too. I watched your videos and she is just so precious and innocent. You can notice the head boobles so I hope you get your answers for that.
I know how unsettling it can be to not know everything, to not know the future and it is easy to scare ourselves with what ifs. Keep positive and enjoy each day as they come. I have taught myself to not think ahead and it has really helped ease my fears with my daughter. I live in the moment. I also believe these fears would and do exist whether our children have special needs or not... no parent wants to think of a life without there kids once they are here with us no matter the circumstances.
Keep your head up and smile. sending a BIG hug your way.
I have those thoughts as well sometimes. But I try to push them out as fast as they come in. They've been pestering me spuradically for 4 years now, so I wouldn't call it foreshadowing!! :) Just mommy worry for our special girls.
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