Archives for the month of: December, 2015
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Graham throwing a rock into the creek during a photo session, Grace furrowing her eyebrows in a disapproving way.

Our Christmas cards are making their way out into the world – there’s a link to our blog on the front. If people happen to check in after receiving our cards here’s what we want them to know about where we are at now.

Grace has been working on communication- going through more than a year’s worth of trials of devices.   The devices track her eye movement and then when she holds her eyes on the button long enough the word on the button is spoken out loud for her by the machine. All of this work on communication has shown of us more of who she is. She is thoughtful, observant, funny, and stubborn. She began treatments this year to help her immune system and she’s been for the most part pretty healthy. Her third grade year is off to a great start. Her classmates sending home little notes for her now and then that give us really great glimpses into what she experiences in school. She’s dancing and playing baseball. She’s a foot shorter than me. She’s about to be 10 – this thought floors me.

Graham is so handsome! He loves to sing and dance. He has a great imagination and loves to tell stories at the dinner table. He has such affection for people – his teachers, our neighbors, family, and friends. He is generous with gifts and sharing. His catch phrases are “actually” and “when I was a baby.”

They are both cared for by some pretty amazing people when they aren’t with us.

The two of them together can be so lovely to watch or utterly frustrating! The picture above captures them so well – I just love the look that Grace is giving Graham.

Kevin and I had a chance to get away this year. A trip to Galena, a cottage, and two days of just us – amazing!

I think we are growing into our family, figuring out who we are – one day at a time. Our Christmas will feature time with family, Jake the Pirate, Thomas the Train, a ballerina doll, a lighted bubble tube, fuzzy slippers, books, and puzzles.  Please don’t mention any of that to Grace or Graham!

We hope that each of you has a Merry Christmas! Thank you so much for looking in on us.

Joy

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waiting for hayrackFall has been hectic – I’ve started several blog entries in the past few months. None of them have actually been developed fully. In an effort though to keep these pieces of our story in one place I’ve decided to upload some of what I’ve written this fall. It doesn’t flow from piece to piece – I’ve given you fair warning.

 

Dress up days

Today was mismatch day at school. It’s a really hard day for me, which I know sounds incredibly stupid, but there is very little that I can control about Grace. I try to always make sure that she looks put together, cared-for, loved. To purposely lay out a horrible outfit just kills me.

Yesterday was worse, the theme was to dress as what you want to be when you grow up. First off, I don’t even really like to think much about Grace grown up. When I do what I want for her is community, people who will appreciate her, love her. I want there to be music, dancing, painting, outside time, sensory activities, movement! Costuming that wish is difficult.

 

Smiling while being stared at

It’s been a little rough lately. It feels like everyone stares and not in a friendly way. At the pumpkin farm adults held their kids back from getting on the tractor ride before us, which is nice, but they seemed not happy about it. Graham not understanding that we were supposed to sit in the handicapped section of the wagon meant another family with a wiggly little one had to wait. A girl on the wagon who said she was 10, looked at Grace, looked at me, and said “special needs child?” “Yes” I responded, “Her name is Grace.” I wanted the label quickly replaced with a name.

The little boy in the row in front of us at church looked at Grace with what looked like fear. When Grace got too close (she wanted a bulletin) he backed away as far as he could in the confines of the rows.

“Stop looking at her like that!” I’ve wanted to yell. “Stop looking at us!

We are a family- we are doing this life too. I don’t stare at you, please stop staring at us!!

But instead I smile. If you are going to be stared at you might as well smile, and in as real a way as you can. If I can’t smile I put my head down.   It seems better to pretend you don’t see than to frown back.

 

Love means you wear drool on your shirt

I caught a glimpse of myself in the mirror – my ponytail was half pulled out, my shirt had a big drool strain, my eye make up was smudged, and I looked tired- a real mess. I’d walked around like this. Gone to get food downstairs before I’d hurried back to Grace. No one had even looked at me funny. Evidently a hospital is a safe place to walk around looking like a wreck. “Sheesh” I thought to myself – “I look the wreck people must imagine special needs parents are”. I try so hard to always seem like I’m pulled together. When I was a new special needs mom I look at those people and they gave me hope. But today, today I’d gotten Grace up, got her ready and the nurse and I had taken her to the hospital for an infusion. We’d waited almost 45 minutes to see a cancer doctor – because even though it’s not cancer we are dealing with we still have to follow protocol. A nurse tried and failed to insert an IV. We waited for the medication to come up. We got the IV in. We gave ibuprofen to make her comfortable. She had a shot of a different med in her leg. I made sure the infusion med was the right med and I had snuggled her in a chair, where she had drooled on my shoulder while she slept. I tried not to move so as not to disturb her. She slept through her blood pressure being taken – this was a huge thing because normally she hates it and the machine just squeezes her arm repeatedly. When she woke up and was settled with her nurse I went and got a sandwich. After I’d eaten I went to the bathroom to wash my hands and that is when I saw myself. I fixed my ponytail and make up as best I could after silently chewing myself out for looking that way. But then I told myself that I’d done what I needed to do to take care of Grace and that motherhood- any kind of motherhood- sometimes is so consuming that you don’t take time to see yourself. The drool I couldn’t do much about. I’d earned it I decided and I would not be ashamed. It meant my girl had been snuggled on me for an hour and a half. It meant I’d kept her comfortable. It is what it is and that day I was just wearing love on my shirt.

 

Epilepsy Awareness Month

Today I saw this on Facebook related to epilepsy awareness month – “You learn how long 30 seconds really is when you are watching your child have a seizure.”

It’s true. I hate having to watch Grace have a seizure. The sounds she makes. The way the seizures contort her body. I wish she wouldn’t hold her breath or put her hand in her mouth. I hate how quick they come on.

 

Dance

I was talking today with two people that I work with.   I don’t work with them everyday, they aren’t in the cube next to me, but they know me and always are checking in on our family. When I mentioned today that I was anxious about changes to Grace’s dance program they both jumped in without hesitation to talk about how the program could evolve and be funded. They’ve seen the pics of Grace. They know how much it means. I was so thankful today for their support, ideas, and quick passion that Grace and others have a place to dance.

Joy