Well the blog is the same but the title is different. Larkin’s Place belongs to the YMCA now and I will post upcoming events, fundraisers, and programming there.
It is a little surreal to me that we had the groundbreaking ceremony ~ the committee has been working so hard on this for so long. I liken it to giving birth and now we have to nurture and groom the way for growth.
It’s exciting stuff and hard work is still in front of us but now the community can see the results. I drove out to the site and inhaled sharply as I turned into the street and saw the huge construction fence around the area, dirt moved, and equipment in place.
I have learned a lot about the YMCA during this process. The Champaign County YMCA has been a part of our community for 72 years. She has been a steady quiet servant leader to many families and kids in Champaign County. A Matriarch that has given everything she has ~ and then some ~ just like most caregivers do. Her beacon is still a bright shining light but her building is exhausted.
Larkin and I went swimming last weekend and it was as if I could feel the Y’s aching body chugging along trying to provide until we give her a new home. The staff is wonderful and they have welcoming smiles on their faces when we come through the door.
So many dreams are coming true not just for those with disabilities but also for every Y member that has remained loyal and steady waiting for this day. I am honored to be a part of the family and learn by example.
Larkin and I went to St Louis last Monday to see her Neurologist. It had been over a year and they wouldn’t give me any more medication until I came to see them. I put it off until they force me. I love her Doc and we have an amazing rapport and together we have used medicine and sheer will to get this little girl well. I knew that he was going to play his Ace card of beginning to wean her off a medication so when he brought it up I was prepared but still felt an ache. She is stable and I hate the thought of changing that but he is right. It’s time to remove a medication so we are going to start with Vigabatrin, which she has taken since 2006. She had a forced wean in November of 2007 when she had a terrible flu but I noticed a marked difference in her after a few weeks so we reintroduced it.
I was going to wait til Jan 1 to begin the wean but I want fresh eyes on her so I am going to do it over her winter break from school and when she returns so her teachers and therapists will be able to observe her for any changes in behavior or development.
It’s a scary road we travel. There is nothing like a visit to a children’s hospital to put all things into perspective. I stood in the waiting room of the Epilepsy clinic and my heart and stomach ached as I watched parents and kids dealing with the terrifying effects of seizures and medications. I felt lucky. Yes I said it. LUCKY. We have control after a 4-year battle and while the war never ends, we have a measure of relief.
I also have a little girl who is compliant and for the most part pretty darn sweet. I watched another mom next to us battle her son for his height and weight. He was screaming at the top of his lungs and his verbal skills were amazing. He articulated very well that he was unhappy and was not interested in the process. I do lament often how I wish Larkin could speak and share her inner world with me. It’s a deep ache but at that moment in time ~ I was grateful that she is easy to care for overall.
One little girl loved Larkin’s music box and came over to dance. She was a tiny thing wearing a pink helmet that had a rainbow colored chinstrap. Larkin reached over and jerked on the strap and the little girl just giggled and kept dancing.
Her mother and I met each others knowing eyes, tired smiles, and passionate love for our babies. It’s in hospitals like this where we feel the most “normal” and that everyone around us understands the fear that emanates from our soul.
I quietly said, “There will be a day when the helmet goes away” and she smiled our familiar hard smile and said, “I hope”.
There were a lot of other stories in that waiting room. Our doctor is a year out for appointments…. that is sad. So many families desperate for answers, help, and an end to the attack on their child’s brain. I read an article recently and have found more since that describe seizures as “shredding” the brain. I stopped cold as that is the EXACT correct word for what happens to our kids.
Our path is set and we begin to wean. Keep your prayers and good thoughts flowing that she doesn’t regress.
We left the floor and I fed Larkin nasty greasy pizza in the cafeteria as a treat for being so amazing. The Champaign County YMCA has held her ground for 72 years and I plan to do the same ~ God willing.
Congrats Amy & Larkin! You are a driving force in C-U. I am happy for you to officially hold the key to Larkin’s Place!!
You paint a picture of hope as you share pieces of your world. Thank you for having an open soul and allowing God to work his wonders through his people. Larkin is a blessed beauty.
I have followed Larkin’s story since the spring of 2003 when I joined your mother-inlaw’s fantastic Book Club.
I am deeply touched as I read your chronicle of Larkin’s story though feel like
I’ve come in late to an excellent movie.
I was just told this year that my cousin with congenital heart problems really had Downs but no one ever talked about that. My sister told me last spring that Janie’s primary diagnosis was Downs but she had heart insufficiencies which were too much for the surgical knowledge of the 50’s.
Thank you for chronicling Larkin’s story and sharing all your thoughts, pain, and joy
so much for the world which needs to hear her story and not keep it a secret like my cousin Janie who passed from a heart attack on her school’s playground at age 15
You are helping so many understand this disorder and what it means to have a child with a disability.
I can hardly wait for Larkin’s place to be operational as I, too am disabled and need a warm safe place to exercise see people and maybe volunteer with some of the activities there.
Thanks again, Amy and keep writing,
Thank you, Sincerely,
Molly Jones. 11/23/2011
I so enjoyed your writing
I have nothing left to say