[caption id="attachment_665" align="alignleft" width="200" caption="Springtime"][/caption]

(I originally wrote this last weekend!)
After today’s weather, I think we finally smell summer in the air. We went to a baseball game, planted some flowers and grilled dinner. Now that I say it, though, I’ll certainly regret it! We’re supposed to get a blip of cold again this week. But, it’s inevitable….summer WILL come, and not soon enough! Bridget can’t wait for summer….no extra blankets on her when she’s in her wheelchair, going to school or extra coats in the stroller at her brother’s baseball games. She won’t get those little goose bumps up and down her arms or frigid little fingers from the chilly air. We’re just excited for warmer weather!!!

There are 2 weeks left of school and everyone in the Kennicott household is looking forward to the beginning of summer! Both Harrison and Bridget will go to summer school for 4 weeks. H is going to Art class and Bridget will continue her education at the Early Learning Center. Then my Little Miss B will leave that wonderful, amazing, phenomenal group of people (and the state of the art facility) to go to elementary school this fall. It’s with very heavy hearts we leave the ELC and all the people that know Bridget so well. She went to school with them for 3 ½ years- that’s half her lifetime. The staff knew her when she was the running, rambunctious little tornado- sprinting down the hall. Her teacher once told me that’s why she wore running shoes. They tried to help Bridget communicate with signs and assistive technology. She learned how to use pictures on Velcro to tell them about her day. They’ve been with Bridget as she lost her coordination, fell and bumped her head, only to do it again the next day and the next. Bridget wore the most adorable cushioned, pink helmet you’ve ever seen to protect her little noggin. Then they were with us after the diagnosis with disbelief and grief. They had to realign IEP goals to meet her needs as they so quickly changed. They made home visits when Bridget stayed away from school for a month to recover from surgery and get stronger through her g-tube feedings. They’ve watched her increase in size and diminish in ability. They came to fundraisers and supported our Hope 4 Bridget cause. They’ve been with us every small, stumbling step of the way. There is no amount of gratitude I could bestow upon them to adequately thank each and every teacher, aide, nurse, or administrator. They’ve done so much for our sweet girl. They love Bridget and she loves them. I just can’t believe we have to leave this family. Her IEP meeting this week was overwhelming to say the least. There were many others in the room and some in tears before me. I know we will love our new staff and they, too, will love our Bridgey. It’s difficult facing change when we really don’t want anything to change at all for Bridget.

As for Bridget’s physical status, she has little that’s changed (thank goodness). Her growth spurt seems to have slowed down. She has an occasional cough and very little congestion. She does have an increase in myoclonic jerks (very rapid, small seizures that just make her jump). We are handling all of it as each new day comes.

So now, we wait for summer and all the wonders it will bring. We will have trips to the beach and the ball park. We will get dressed in capris with no jackets or sweaters. We will spend time together as a family and have special projects to accomplish. Most of all, we will inhale all the smells of summer and hope that you do, too.

Posted by Sara Kennicott on 5.28.2011 – There are no comments for this post, be the first to join in!

So here is the latest and greatest on our dear, sweet, Bridget. There is nothing significantly different about her, gratefully. It’s some little things that add up, however. It’s the constant touch and go, ins and outs, ups and downs, however little, that make us hold our breath from day to day. Yet, we’re here and taking it just that way- day to day.

Bridget had a bad cold right around the time of the blizzard (Feb. 2). So, the two days off was a relief for her. She only ended up going to school for two days during a two week period. I was fine with keeping her home if she didn’t feel well. Then when we tried to send her and it didn’t work at all. Every time she sat up in her wheelchair or got on the bus, she would have terrible coughing attacks where she couldn’t catch her breath. All of this resulted in her gagging and throwing up (and lots of laundry). The end result was getting kicked off the bus! We understood this decision as it was putting her safety and other’s at risk. When the principal calls you at home on a Friday night, you know something’s wrong. On a side note: we adore Bridget’s school team and value any decision they make.

Happily, the cold subsided, we got a doctor’s note to ride the bus again AND Bridget got a major overhaul on her wheelchair. I believe the term is “pimped her ride.” The issue is Bridget’s rate of growth. She is inexplicably growing so quickly, we had to get a whole new seating system in her chair. She also needs a bit bigger clothes (like sz. 8!). Obviously, the disease destroys neurons, so it’s possible everything is out of whack because of this. Per our neurologist’s office, we tested all her hormone levels, which came back normal. This is mystifying, to say the least. It is a workout to lift that 60 pound girl up the stairs! Thank goodness I’m working out!

With February passing, there is a feeling of melancholy. I think about how three years ago, I thought things were terrible- I was diagnosed with cancer- starting my 6 month regiment of chemo and Bridget had 2 small seizures by then. Yet, she was running around, shouting, eating, dancing, and watching tv. I can’t even wrap my head around that. I wish I could go back in time and have that little tornado back in my life. She was three at the time and now she’s six! We block our future with a brick wall, refusing to imagine how much time there is. The simple truth is: there just isn’t enough time.

In the meantime, we forge ahead. We’re very happy to announce our latest fundraiser, open to the public “A Fifth Season….Brightening the Landscape of Batten Disease.” Please join us for a benefit to fund research on behalf of the five Chicago children who are bravely fighting Batten disease. It will be held on April 2, 2011 in Palatine, Il at the Cotillion. See our Fundraising page for more information!

Thank you for always uplifing us with your support. We couldn’t accomplish these things without you! Love and prayers.

Posted by Sara Kennicott on 3.4.2011 – There is one comment for this post, join in!

Although it turned 2011 exactly 10 days ago, I haven’t had the opportunity to sit down and just reflect, write or update the website about Bridget. So, here is my best attempt!

There have been three major events for our family within the past couple months. First and foremost, our beautiful Bridget turned 6 on November 11th! It’s a celebration filled with many emotions. We are delighted and happy and grateful that our family came together to celebrate life- Bridget’s life. She deserves SO many celebrations. In fact, our dear friend, Kerry Hughes decided to throw Bridget a grand event at the Kohl Children’s Museum. With over 100 attendees, The Children’s Rare Disease Network, the BDSRA and Lybba, we sent a message to pay attention to these children, to Bridget. I realize the people who attended the party mostly knew this, but we had great coverage by the Daily Herald, as well. It was a party that I will never forget. Thank you to all the people who made it happen! And so, Bridgey is 6…an unbelievable number. We sit in a vacuum of time and try not to wonder what is in store for us. We sit in this holding pattern and cuddle with our girl, catching smiles when we can, giving her therapies, nourishment and watching her grow like crazy. I try not to think about the other little Kindergartners who she would be having play dates with or how she would be learning letters and sounds (it’s the teacher in me). I feel like I will always think of Bridget as that precocious little girl, almost 4 years old, who would run so fast and climb and slide and laugh and dance. She could eat an apple all the way to the core, toss it to the side and go in the fridge for another in about 5 minutes flat. For these reasons, her birthday makes me incredibly emotional. Looking at time is a funny thing. “We can’t go over it. We can’t go under it. Oh, no! We’ve got to go through it!” (excerpt from We’re Going on a Bear Hunt)

Another major event was the Conference hosted by the National Institute of Health and the Batten Family Coalition (8 nonprofit family formed foundations including Hope 4 Bridget). On November 11-12 (ironic timing) about 50 people from around the world, representing the best from science, the industry, and the NIH came together in Bethesda, Maryland to discuss new approaches toward developing translational research for Infantile NCL and Late Infantile NCL (what Bridget has). The conference was a great success because it was the first time this group came together in an open discussion. We now look toward the future of research and trials in hopes that we can support these scientists and doctors. By coming together, they have opened the doors to one another and in finding a cure for our children. We will forge ahead in our efforts, too, with future fundraisers that could support their efforts. We will not give up on fundraising for Hope 4 Bridget!!!

Third, I clump the holidays into the last of our major events. When December began, we knew it wasn’t going to be an easy go. It is by far the truest statement, that the holidays can be very difficult for some people. You mull over the ‘what ifs?’ and current status and it all just kind of gets to you. Dave and I were on the exact same page. There’s a line now that I will love forever. If you watch Christmas Vacation, you know the part when the wife is telling everyone to go home before anything gets worse. Well, Clark just looks at her and says, “Get any worse, get any worse!! Take a look around Ellen, we’re standing on the thresh hold of HELL!” In a twisted way, this made me absolutely hysterical with laughter and tears. Harrison had never seen me laugh so hard that I cried. He was mesmerized! Silly moments catch you off guard and make you laugh ’til your stomach hurts. And we laughed a lot over the holidays. The two weeks off with my family was true bliss. It was a “wonderful life” filled with laughter, a couple tears, but mostly the people we love.

Posted by Sara Kennicott on 1.10.2011 – There are 11 comments for this post, join in!