It was a two-year process, but Different Like Me is finally published!
To find out about that trip you can order a copy from Amazon here. All proceeds go to support orphans with arthrogryposis who need adopted, and other kids with arthrogryposis (not my own) who have equipment needs.
I wrote a Children’s book! It’s not yet published. If you would like updates about it, or information on how to order it once it becomes available, please join our Facebook group by going here!
Different Like Me is a book about a little girl with arthrogryposis who goes on a grand adventure across the ocean to meet her little brother! Well, if you follow this blog, you already know the story. But you’ve never seen it quite like this! With 25 fully illustrated pages of pure delight your kids will love it! (Oh, wow, I sound like an ad. LOL)
For all of those people who asked me to write a book. THERE! It’s just 25 pages written at a 2nd grader level, but that’s pretty much all I could manage. 
This whole project has taken over 18 months to complete, but it has been well worth the effort just to see Roland joyfully freak out every time he sees himself or his sister in cartoon form.
Finally a book they love that breaks up the hours and hours and hours of Mo Willems material that gets devoured in our home!
Proceeds will go to support the medical needs of AMC kids (ones not living under my roof :)), orphans with AMC and the families adopting them, and hopefully, if we sell enough, AMCSI!
Also, and foremost, this will promote arthrogryposis awareness! (Or Hall’s Contractures! Or what I’ve been calling it lately just to dumb it down: Multiple Fixed Joints.) Awareness is my main goal, and something I believe in since we need awareness to receive funding, research, insurance approvals, a place at the table, etc.
I have broken up the word arth-ro-gry-po-sis and tested it on six year olds who can now pronounce it! So the hope is that this word becomes easier to say! Laelia and her peers read it fine, even with the big arthrogrywhatsis word in there! In the beginning of the year when Laelia’s reading tutor, Danielle, would come over, she would bring strips of paper with big medical or scientific words on them. Laelia got to keep the strips if she said the word correctly, which was hugely motivating. It was amazing what giant words she could then pronounce once they were read one syllable at a time! Like lepidopterist! It’s lep-i-dop-ter-ist, a.k.a. butterfly scientist! Even my brain goes to mush looking at lepidopterist, but I calm down when it’s lep-i-dop-ter-ist.
Yeah I can be domestic sometimes. 
Not to brag (okay, totally bragging) but I’m kinda famous in local circles for my chocolate chip cookies. It doesn’t matter how many I make, I never return from an event with leftovers. After a few similar fund-raising events done by friends, I was inspired to sell my famous, yet simple cookies to help with Laelia’s wheelchair costs. I’m selling half a dozen for $5. All proceeds go toward my daughter’s wheelchair copay specifically. This is my plot to turn sugar into a wheelchair.
(If you’re not in San Diego and I need to mail your cookies to you, just add another $5 to that total for shipping. Then email me at recordsky(at)gmail.com and I’ll give you my mailing address where you can send the $$$. After I receive your letter, I’ll bake your cookies and mail them to you using the return address on your letter. Ta da! I’ve never done this before so we’ll see how this works.)
Laelia’s power wheelchair is ready to be delivered, but there are several obstacles between us and bringing it home.
1. We live in an apartment with a billion flights of steps. We’re at the bottom of a hill and have to take several flights of stairs just to get to the front door. Then there’s a flight of stairs inside the apartment too. And since we can’t lift the power chair up even one stair, we need to move. And every time I have to carry my little girl awkwardly while dragging her wheelchair up and down the stairs it becomes more apparent we need to move quickly! We’re in the process of moving, but it will take AT LEAST another two months to work out.
2. We have no way to transport her power chair. It won’t fit in the car nor can we lift it into the car even if it did fit. But Laelia’s grandpa (Chelsea’s dad) has a lift for us that he thinks he can hook up to the back of my Nissan Sentra. We’re waiting until we have a place to take it to!
3. The copay for the chair will be between $800-$1000. This was a rough estimate from the wheelchair manufacturer just to give me an idea on what to save up for.
4. They were suppose to give us a quote first and wait for our okay, but somehow the chair got made to Laelia’s specifications and is ready NOW. Getting it before the 2011 year in four weeks will mean it won’t be added to our medical spending account. Also our insurance is changing at the end of this month and I don’t know if the copay gets better or worse. Dumb stressful budgeting discussions with hubby to follow. :-/
Okay that said, I’m super excited to see Laelia be a ton more mobile and independent! She would love to keep up with me at the store or move herself on a walk instead of being passively pushed. I can’t wait to show her a whole new world! And even though this all seems hard and expensive and stressful, it’s for her. It’s always for her. And I’m sure everything will work out. In the mean time, cookies anyone?
