Caroline’s will turn 5 on August 17. When I look back on all that she has endured and accomplished in that short time, I can hardly believe that it has only been five years. Since she has entered this world her scheduled has rivaled that of a CEO. She has frequently commented that good help is hard to find, referring to me as her executive assistant. I remind her you get what you pay for, kid.
The scheduling, fighting with insurance companies, driving to appointments and trying to ensure Caroline had some sort of childhood was all part of my role as her executive assistant and mom. Sometimes I feel like the world’s greatest success and just as often (ok, more frequently than not) a big failure. It is not easy to balance Caroline’s health, wellbeing, development and childhood. It just isn’t.
For a long time, I have referred to Caroline to the hardest working baby I know because of the amount of time she spent in therapy and the countless hours she would spend outside of therapy perfecting skills that most of think nothing of. I might be biased but I think Caroline is remarkable. Her personality is playful and determined despite undergoing over 20 invasive procedures and countless studies in her less than 5 years.
Caroline has learned to walk, eat by mouth (though she still needs her feeding tube), communicate (on some level), climb (on every level), undress herself, put her shoes on, tease people, tell jokes without talking, navigate any smartphone or tablet, engage in spontaneous pretend play, ride a tricycle, color and swim several feet and safely exit a pool. It might not sound like a lot but each of these accomplishments took months if not years of therapy and hard work to achieve.
In honor of Caroline’s upcoming 5th birthday and in recognition of all of her hard work, I am launching a fundraising campaign (a series of fundraisers) to raise the funds to allow Caroline to re-start therapy, pay for uncovered medical expenses and to pay for her outrageously expensive (but completely worth it) tuition all of which will help Caroline meet her unique potential.
More about the campaigns will be shared throughout the summer. As of right now, we have launched a Give Forward campaign and have created an Autism Acceptance shirt. If you would like to applaud Caroline for her efforts, give her a birthday present or just pay forward it, we greatly appreciate your generosity.