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Category: Family Synapse

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Please Join Us

Please join us again for Purple Day next tuesday, March 26th. Purple is the color for Epilepsy Awareness and next tuesday is the day we get to make some collective noise. Feel free to check out my Epilepsy Information page. One third of the people who have Epilepsy have uncontrolled seizures; Aidan is part of that group. His seizures have changed our lives and stolen a part of him.  I believe that telling our stories...

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SWAN Awards

I was just trying to feel a little less alone and get a little help explaining the myriad of issues around having a child without a diagnosis when I staked claim to an Undiagnosed Children’s Awareness Day two years ago. By asking Dana to join me, what I found was SWAN (Syndromes without a Name) both in the UK and US. Clearly I wasn’t alone. It may seem ridiculous to have another Awareness Day. I’m...

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The Weight of Love

Written with love for the parents of Hole in the Wall campers The Weight of Love Stop for just a moment. Stop and consider. Consider what Love has required of you. Consider and ache and relish and grieve and celebrate. Love has required much of you. Some of it came easily and united you with everyone who has ever loved a child. Your hands tenderly stroking her hair. Your lips kissing each of his piggy...

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My Very Own Super Heroes

This is Aidan when he was in the hospital still fairly medicated. His Nana did a great job putting together an entire bag of entertainment goodies. The unwrapping kept him occupied for a long time and we have yet to get through the bag because until recently he hasn’t been very awake. (subscribers click through to the blog to view video)   This is Aidan at home today:   You’ve seen the picture of Super Heroes...

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Big Day

Today was a much better day for Aidan and a much more involved day for myself. When he saw me this morning, he reached his two hands out in his “I’m ready to walk” sign. So good to see him feeling up for that and so discouraging that we’re weeks away from that kind of movement. For breakfast Aidan drank 8oz of water and 4oz of chocolate milkshake. He continued to stay well hydrated all...

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End of the Day

Weekends are weird at the hospital. It’s very quiet and nothing really seems to happen. After a decent show of eating yesterday and a little bit of drinking, Aidan has shown no interest today. We spent the day getting him hydrated with IV fluids and bringing his heart rate down. What I’ve learned of his pain so far is that he goes from seemingly comfortable to being very much in pain in a nanosecond, which...

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Hospitals and Demolitions

Garreth came down to the hospital yesterday to spend the weekend. Aidan, who has been in a drug induced haze since tuesday and has mostly grimaced at me in pain, mustered the strength for a beautiful smile for Daddy. Whatever. Almost as soon as Garreth arrived, my body shed it’s last bit of energy. My cousin arrived around the same time and offered to stay and feed Aidan while we went out to eat. Aidan...

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Day Three

I walked to the hospital in the snow this morning feeling very much like I was on my way to work with the rest of the crowd. I’m on pain control today, which will probably involve charting new or diminished medication and singing songs and getting all protective when people want to move my boy around. I considered the times I walked from the Hospital House to the Hospital that March twelve years ago. It...

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Super Hero

I can’t think of a better way to start my day than to read this. Aidan has had his Super Hero cape on at the hospital because, really, this is his moment to shine. When I read about the Tiny Super Heroes, I was most thrilled that they are reframing the way we think about kids with disabilities. You’ve heard me say that Aidan has Special Powers. Yesterday was Spread the Word to End the...

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Day One

Aidan was in and out of sleep today. As much as the nurses were sweet to him and spoke to him, Aidan was never what you’d call “with us.” His pain meds are doing their thing and Aidan wasn’t engaging at all with me. He’s a tummy sleeper and the hospital is busy and noisy so he really couldn’t settle in to a comfy sleep. He ran a little temp all day which was to...