July

(To help Laelia and her Mommy  get to the AMC Conference, please go here.)

So much has happened in the  last few days! For one thing our summer plans are now officially  crazytown.  :) We decided, after a ton of encouragement, to attend the AMC Conference July 6th-10th! (This comes after announcing that we wouldn’t be going. What can we say, we thought it was a crazy plan. Mostly because IT IS. :)  But we’re in!) Then ten days  after  Mommy and Little Girl get back from the conference, a parent swap takes place,  and then  Daddy and Little Girl  are  off to Shriners in Philadelphia!  (For a check up,  x-rays,  AFO adjustments  and to schedule Laelia’s  pin removal  surgery for later in the year.)  And while they’re in Philly,  Mommy (who will have just become an aunt)  will be traveling to Northern California to see her family, including her  sister and  new baby nephew who  is due at the end of June!

This  July is going to be BUSY!  At least we hope so. If it all works out. I hope I hope! :)

Those involved with getting our family to and from medical  treatment always humble me. The Ronald McDonald House in Camden, New Jersey,  has us on a waiting list already. Also it looks like  we will  have flights  through Frontier again. (They have given us our last few complimentary flights, and were willing to help  again even though their program has changed!)  It goes without saying that without these wonderful programs we would be forced to, I don’t know,  move to Philadelphia?  Hitchhike and live off the streets? Go without care for our child? Get second-rate surgeries from unqualified doctors? Be in an insane amount of debt? Probably. I am beyond grateful.

But back before anything with our Philly trip was worked out, and while I was standing in my kitchen just  staring  at my appointment letter from Shriners  and worrying about the future (as I always do with medical trips), I can guarentee you that the LAST thing  I thought would  work out  would be TWO arthrogryposis-related trips in twenty days! But then our wonderful friend,  Kiersten, asked me to reconsider going to the AMC Conference,  and offered to let  us  share (aka bum)  her hotel room and rental car! (Despite the fact that last time she shared her hotel room  with us,  during the Arthrogryposis Clinic in Seattle,  Laelia kept everyone up all night! I definitely won’t remind  Kiersten of that. ;)) It was such a gracious offer that it sent Charley and I back to serious talks concerning the conference, and finally to a decision to go. And after that decision leaked  on  Facebook (that was all me :)), we were blessed by so many  people writing us and telling us how excited they are that we’re coming! I love the people in our lives!

Then  several people going to  the same conference  told  us about their success with Gofundme, which is a website where people can support trips to medical conferences, and just about anything else. So after more discussion, we decided  to set that up. (See shameful begging for $$ above.)

Oh and the conference is not just a meet-and-greet, but a life-changing experience. There are break out sessions that  cover everything from home modification to hippotherapy. (I’m hoping to  get at least ten new ideas for physical therapy alone!)  There are speakers who have already sent me their books or blogs, and other coordinators or board members of AMCSI  who have  already encouraged us so much  that I can’t wait to meet them in person! Plus of course our  doctor from Philadephia and other wonderful medical professionals will be there donating their time! So much all in one place!

AMC families  are an isolated group. Arthrogryposis is such a rare thing that we are scattered all over the place.  All previous AMC  conferences have been in Florida, Pennselvania, Ohio, Texas and Chicago, so it doesn’t look likely  that one will magically pop up in San Diego any time soon.  And I’ve wanted  to go to one of these amazing conferences from the time Laelia was born, but we just couldn’t work it out. So I’m super excited! It will be such a relief to meet a group of people who have been there. Who get it. They get the  joint contractures and splints and frustrations. They cheer when  their  kid wipes her nose  on the towels, trips his sister in the hall  or steals candy off the  table. Why? Because it took specialized  motor function  that doctors told  them  they may never  have to accomplished those bratty behaviors! I want to be in the company of parents who get the fact that  “normal” is flying for surgeries and running over the cat’s tail with a power wheelchair and fighting your school to get them to treat your kid just  like the other kids. I can’t wait to  be normal with these folks. And I can’t wait for Laelia to meet so many people–kids and adults–just like her!

So thanks for supporting us with your  encouragement! I really appreciate it! I feel completely overwhelmed by so much love!

One Response to “July”

  1. Anonymous says:

    I am thrilled for you! I went to check out your donation page and see that you’ve received the total funding for your air fare. Praise God!

    Blessings,
    Robin Clark
    Rescue

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