Archive for April, 2010

I become a crazy, irrational person in the middle of the night when Ella doesn’t sleep. I can’t control myself–I curse (which I never do), I say mean things to Dave and I feel like running away.

Ella has not been sleeping well the past four nights. I think she is having trouble with seasonal allergies and she is going through a seizure cycle.  I can pretty much handle anything with grace and patience in the light of day, but at 3 am it’s a whole different story. Luckily, Dave and I made that pact early on https://juliepeoplesclark.wordpress.com/2010/03/14/my-husband/, not sure we would’ve made it, if it hadn’t been for the pact! (Which I am starting to realize was made mostly because of me.) Oh, how I love my husband. Praying for a good night sleep.


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Over the weekend we traveled to Montreal for Ella’s ABR Therapy http://www.blyum.com/. We haven’t been in a year and we haven’t been doing the therapy for a year either. As I mentioned in Ella’s story https://juliepeoplesclark.wordpress.com/ellas-story/ ABR therapy has been very effective for Ella. We started ABR when Ella was 15 months old and performed the therapy for 3 – 4 hours a day 7 days a week. Last year we needed a break. This weekend was great, we are ready to get back to work. It was wonderful to see old friends, meet new ones and learn the new ABR techniques.

New ball technique

ABR creator Leonid Blyum

Daddy learning pelvic floor exercise

Between shoulder blades

Daddy being Daddy

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There was a older gentleman in my Bikram yoga class this morning who is running in the Boston Marathon on Monday. I have always been fascinated and inspired by marathon runners, I love watching them live and on TV. Every time I see a race I get inspired and make plans to run. I get on the internet find local races and start a running program. I was even signed up and was training for the Baltimore Marathon when (much to my relief) I found out I was pregnant with Ella and had to drop out. This past summer I did the same thing, I ran/walked in a 5k with Ella, had a great time and thought I would start running and do more races with Ella. I ran for about two weeks and stopped. I don’t like to run–it hurts my body all over, my shoulders, my hips, my knees and my feet. It hurts to the point where I have to stop everything else to recover including carrying and lifting Ella.

Those of you that know me and have read in this blog know that I am very active. I practice Bikram yoga, teach and practice classical Pilates, use a Russian kettlebell for weight training, hike in the summer and cross-country ski in the winter. This seems like a lot and is, but it is a part of my daily life. I feel better mentally and physically when I excercise  and I know it helps me with the physical care of Ella. But for some reason that question, “What am I training for?”, always creeps back into my consciousness. As a professional dancer for many years we were always working toward a performance so I suppose working toward a goal is ingrained in me.

The other day I took Ella for a hike on Mount Philo a small mountain just outside of Burlington, with a paved road perfect for pushing her wheel chair up.  A few years ago I started taking Ella up Mount Philo each spring as soon as the snow melts. It is not easy there are a few spots that are really steep and I would find myself huffing and puffing as I willed us up to the top. During this recent hike as I reached the top I realized that it wasn’t so hard–I didn’t have to stop and catch my breath or whine to Dave about how hard it was. Pretty cool! My work was paying off. Then as I put Ella into our van I noticed that my knees didn’t hurt–we have a large van used for Ella’s transport that has a pretty big step to get in and out, made even more difficult when you have a 37 pound kid in your arms that can’t hold on and help. This has been really hard on my knees and was hurting each time I made a transport. So in my training I was focusing on my legs— in yoga class I was pulling up on my leg muscles making sure my weight was centered, in Pilates I was working my deep core muscles and my kettlebell workouts have been mostly squats (ugh!). This is it! This is what I am training for, everyday life with a child with extreme special needs, getting her slippery body out of the bathtub without hurting my back, bending over her to change her clothes, lifting her out of bed, carrying her down the stairs each morning and back up each night.  This is what I am training for… creating an accessible life for my daughter.

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Easter Morning

..I try to when it comes to everything in my life, how I take care of myself  AND most of all Ella’s care.

When Ella was a few days old, still in the nicu, doctors wanted to do an MRI to determine the extent of damage to her brain. Anesthesia would have to be used to keep her still during the procedure. I got an awful sick feeling in my stomach…I didn’t want them to do it at that time, I felt she was too fragile and not ready to be put under. The damage done to her brain would still be there in a few weeks so why not wait until she was stronger. The doctors pushed and I finally gave in, an anesthesiologist came to the nicu and took Ella to the MRI. I was sick–throwing up the whole time she was gone. About 45 minutes later the anesthesiologist came into our hospital room and told us that Ella didn’t do very well during the MRI, she went into distress and had to be intubated again. I learned my lesson fast and thank goodness there have only been a few other times when I haven’t listened to my gut. As I have mentioned before Ella and I are so deeply connected that these ques whether subtle or gross cannot be ignored. I have butted heads with a few professionals (luckily not many) when it comes to Ella’s care. They always seem to back off when I tell them I am going with my gut.  Furthermore it makes me responsible for Ella’s well-being not leaving it in the hands of someone else. My mistake if I am wrong not someone else’s.

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