Tagged: community

22

When Gratitude is Hard

Reposting because this is still one of my favorites. Also because we sang these same songs again at my concert last weekend and they felt redeemed…. ******* In response to all of the people who say, “I don’t know how you do it…” First, you could do it too. You’d rise to the occasion, just like I did. Second, you are doing it, whatever it is right now, whether it be crippling anxiety, a season...

2

Meet My Village

Having a child with a disability means dealing with chronic health issues. Most of the time we’re cruising along pacing ourselves just fine, sometimes even forgetting that we’re on a long arduous journey. And sometimes it feels like there’s always something. If it’s not a new set of seizures, then it’s a surgery. If it’s not battling insurance for a bed then it’s trying out a new medication. I’m not doing this alone. Not by a...

9

And Then I Talked About Pissing Contests in Church

I went to speak to our Mothers of Preschoolers (MOPS) group at my church a few weeks ago. Here were these sleep deprived, spit up on moms with newborns and energetic tikes wanting to know how to be part of my world. I got to share how sometimes my journey looks just like theirs (we all celebrate our children and get tired and work hard to see them progress) and sometimes it’s very different (Disability...

5

Undiagnosed Children’s Day 2013

Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability. I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough. Nope....

6

Bloggers on Your Marks…

Get set… I believe in the power of story. I believe that change happens when our circumstances become personal and meaningful to others. It’s when you know someone who uses a wheelchair that you are compelled to set up a lemonade stand to buy wheelchairs for kids in developing countries. I believe that stories connect us and help us feel less alone. That moment you read someone’s story and say, ‘Yes, I get it” brings you...

5

I Forgot to Miss You

Dear Epilepsy, I forgot to miss you. You’ve been in our house for over two years now. At first, you were so quiet I didn’t realize you were even there. I had been actively blocking the doctor’s warning that said many kids with neurological impairments will develop Epilepsy. Then there was no denying your presence. So I found my community, other seizure moms who get it, and I may have gone a little crazy. You were...

4

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...

6

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...

1

Wheelchair Diving

  — 1 — True story: I went to the gym this week with a personal trainer. He asked, ‘You’re 40, right?” I was shocked and offended, even though, yes, I’m 40. I was prepared to DENY DENY DENY when I asked him accusingly, “Why do you think I’m 40?” There was no way he could win that one, right? He replied, “I looked at your chart.” Oh, ok. Rational, researched facts for the win....

4

Putting on Your Oxygen Mask

    November is over and we’ve already forgotten how stuffed we were with turkey and chocolate. It’s excellent to have a time of year to collectively focus on gratitude, and certainly that’s a quality we try to cultivate at all times. Often it’s the “counting blessings” frame of mind that gets us through difficult times. Many of us are able to find the good amidst even the most painful challenges.   What if our...