Tuesday, June 25, 2013

April & May … Springing along

Look at me catching up on my blog posts! It’s really because I have so much to say about June … stay tuned!

April was a hideously busy month! In addition to my new found love of working out, I also began volunteering more at the Seattle Children’s Research Institute. It’s where I can get away, but still do something that’s “good” to ease my guilt of the need to get away from it all. The month of April was also consumed with preparations for the annual Seattle Children’s Clare Beckett Guild auction event, which took place on May 4. I happened to be this year’s speaker and had the opportunity to share Jennah’s story to a live audience for the first time. The event raised over $53,000 for Seattle Children’s uncompensated care fund … awesome!

The auction also showcased the amazing work of Soulumination, an organization, that through photography, helps families celebrate the lives of children and parents facing life-threatening conditions, completely free of charge. Please visit their website, but make sure you have some tissues at hand! Here is a slide (should have read “Aug 2007”… oops!) from a slideshow that I produced for the auction, which featured one of the photos from our session.


Among other news, Jennah has moved into her own bedroom!! Her fancy medical bed (the SleepSafe Bed) arrived in a record time of less than 3 months! These babies cost over $10,000, but we are so very fortunate to have insurance that allows us to afford this equipment. After the experience of living overseas and the painful attempt to get any piece of durable medical equipment, you will never hear me complain about insurance in the U.S. Jennah’s big brother graciously moved out of his room (he had designed the stripes and chose the paints himself) since it’s the one closest to the master 008bedroom. Quite honestly, when we moved back from Dubai, we never imagined moving Jennah into her own room! But Miss Jennah has surprised us once again with a very smooth transition. She began sleeping through the night within the first week! Darn it … her doctor may have been right about me being at fault for her frequent waking! On the other hand, I still frequently wake through the night to check on her … I don’t think that will change anytime soon, but I’m OK with it. Additionally, we did another medication tweak to help things along and she still wakes a little too early in the mornings due to one of her morning meds causing some gastrointestinal discomfort. We plan to tackle this issue during the summer … why wait until then? Stay tuned for the June update …

April and May also led us into a very busy Little League season for both Bassil AND Jennah! Ironically, they were both on Mariners teams this year and we took Jennah to her first Seattle Mariners game … she had a blast! It’s not very well known, but within the greater Little League organizaWP_000924tion are divisions for players with special needs! Jennah played on the Challenger baseball team through Sammamish Little League this season. I say it often, and I’m going to say it again … we are so incredibly blessed to have a child with special needs! Jennah has introduced us to so many amazing people. The Challenger baseball team we joined had an amazingly enthusiastic coach and incredible “buddies”, who are other typical Little League players that volunteer their time to help the players with special needs. They help the kids bat, catch, and in Jennah’s case, run her chair around the bases. She LOVED running the bases and was squealing and screaming with delight! The “buddies” are just the most inspirational, wonderful, selfless kids … not enough words of gratitude can be said for them.

And last, but certainly not least, Jennah’s uncle, Matthew, earned his Doctorate of Physical Therapy! Congratulations Na Matthew! Jennah is one lucky little bug … one uncle is a nurse, and the other is a physical therapist. I’m going to go ahead and credit Jennah with the positive influences on our decisions and the paths we choose to take. Some think having a child with special needs is unfortunate or a burden (yes, people have actually said this to my face …).
I beg to differ.

1 comment:

  1. Lovely post. Thanks for helping us see all sides to your beautiful blessing called Jennah :-)