A Birthday, Broken Bone, Benefit and other Ballads…

Not surprisingly, I have neglected formal updates on Bridget. Sometimes I may do a shout out on face book or even a personal email to family and a couple friends. But, it certainly is long overdue to hear about Bridget. B…..it’s one of our favorite letters in the alphabet. Bridget, Bridgey, Little Miss B, Sweet B…take your pick. It’s all about the girl behind the letter.

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Bridget celebrated her 9th birthday in style this past November. Although there was no formal invite or party planned, it was of little consequence. Bridget was pleasantly surprised by her second grade friends and Mrs. Floyd, her classroom teacher. They threw her a party like none other. It was complete with party hats (hers was a crown, of course), singing, storytelling, poster sharing, gift giving, hugging and inevitably a bit of crying (you know me). I was so pleased I took this special day off of work to share the happiness that these children provided. It makes me so proud of and grateful for the children Bridget have in her life. What an amazing experience as a mother, especially to one who has such a special little girl.
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And thank goodness I took this 11th day off in November. We proceeded that afternoon to Bridgey’s orthopedic appointment to check on her back, hip and oddly swollen knee. After our 2 hours of x-rays and waiting, it appears that Bridget broke her tibia- just below the knee. WHO KNEW?!! She was experiencing pain, but we thought it was because of her hip condition- it is sub-lexed, or about halfway dislocated. She also has increased scoliosis- all of these issues are due to her neurological disorder. It’s just astounding what Batten disease can do without even trying. Other parents call it the Batten monster, and I would whole heartedly agree. Some say, “the B Monster has reared its ugly head again.” Fortunately, Little B’s leg healed quickly with just a mesh/Velcro brace at night and her hip is not causing her any discomfort. We did, however, need to get her fitted for a TLSO (chest) brace to wear when she is sitting upright. I realize it helps, but it’s obtrusive and emotionally daunting. Be gone ugly monster.

That same week rounded out with the culmination of A Fifth Season, a Benefit for Batten disease. It is the annual event for our group of families who have children affected with Late Infantile in the Chicago land area. Previously, it has taken place in the spring, but we moved the event to November. Although I was skeptical, it proved to be a very worthwhile decision. We had our best AFS yet- raising almost $80,000 for Batten disease. AMAZING!!! We will continue to fund Dr. Pahan at Rush University and contribute to the Dem Child project- a worldwide registry of children affected by Batten disease. Attendance was astounding, auction items dazzling and heartfelt generosity was off the charts- in the atmosphere, if you will. The theme was focused around “Wish Upon a Star” and concluded with live bidding of a star registry in each of our affected children’s name. Just think- when you look up on a clear night, you could be looking right at our Sweet B’s star shining right back at you.

Ballad- a song or poem, especially a traditional one, telling a story in a number of short regular stanzas. So here’s the tune: This is the last piece to my update, which includes bits of news about Bridget to date (almost Feb., 2014). We had an uneventful holiday season, dodged the snowflakes and huddled inside during this polar vortex. On some days, Bridget doesn’t even go to school because it’s just too darn cold! We hired a new addition to our team- Jessica, who is now B’s nanny/caregiver. She came at just the right time and we are blessed she said yes! Remy, our 2 year old, survived a harrowing accident/sickness as he swallowed something he shouldn’t have. He recovered from a near fateful surgery and is working on regaining his weight. He and Chewy, our beagle, continue to snuggle with Bridget and entertain us all. And finally, my dear friend Kerry Hughes embarked on her own journey with www.harmony4hope.org She is continuing her mission of using music as a vehicle to bring awareness and raise funds for rare disease. In her words- “Where there is MUSIC, there is unity. Where there is unity, there is HOPE!”

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And that, my friends, is the end of this ballad. Stay tuned for more tunes….and always keep hope in your hearts- for Bridget and all the other children facing rare disease. Whether their name begins or ends with B, pray for them and love them. Simply put, ‘B’elieve.

“Music expresses that which cannot be put into words and that which cannot remain silent.”
Victor Hugo

Posted by Sara Kennicott on 1.28.2014 – There is one comment for this post, join in!

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