Wednesday, February 8, 2012

Mama's Pride

Hi Sarah,
I am a SNAP swimmer (I help in the Friday 6pmclasses); Nancy tuned me into your blog last semester and I am truly touched by your posts. I think they are beautifully written and get to the heart of parenting a child with special needs. I am a graduate student pursuing a masters in Rehabilitation Counseling and I have found your blog very helpful learning about MMD. I am doing a presentation on Muscular Dystrophy in one of my classes and was wondering if I could use some of the quotes in your blog. I would omit any identifying information to ensure your and Zoe's confidentiality. I would understand if you did not want me to share these quotes as it is personal information.
Either way, thank you for writing. Looking forward to SNAP starting this week! GOOO SNAP
Best, J. H.
(I want to preserve her identity)

Hi J,
I feel truly honored to know that you want to use my blog to illustrate your presentation.
Please feel free to use it as much as you want.
I am curious which quotes you want to use.
Thanks you for reading the blog!
Looking forward to seeing you in the water this semester.

Hi Sarah,
Thanks for letting me quote your blog. I've pasted the quotes I plan
to use at the end of the email. I mainly chose quotes that dealt with
issues of navigating our broken medical system, increasing
independence with the help of accommodations, and adjustment to
disability. I think the quotes add a nice personal touch to the
presentation when so many students get bogged down in medical terms.
Thanks again for your help!
Best, J.

“I have learned how much strength it takes to care for a child
with special needs, and how it's okay to not always be okay. To hold
grudges against yourself won't help, to look at the glass half full
and not half empty is better. It's a challenge, but it now gives true
meaning to my life.”

“Tomorrow is "Clinic", we are going to see Dr. [P], the woman who
decides how far [my daughter] has come, if her goals have been met
both physically and cognitively, if she can still benefit from
California Children Services (CCS), if the services rendered will be
reduced or not. It's going to be nerve wracking to see how [her]
"case" will be handled. These clinics are quick and to the point, but
should be an open place to communicate and I need to advocate for

“For the first time she walked into PIP with her walker, and she was
sooooo proud of herself, being independent, down the hall, into the
playroom, and into her classroom.”

I am soooo proud to share this! I had to post it.

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