Monday, May 5, 2014

I Heart Lily .com

About a month ago I had gotten an email from showing a rocker/recliner chair that would be amazing for Lily. Lily's current options are wheelchair or floor while we are at home. She can't sit on the couch without being held up with full on support, she can't use the expensive bean bag we got her because it is too thin and she rolls right off. If she is sleepy she can sleep on it, but that is it. But this chair rocks! Literally! Lily used to rock and rock and rock in one of those infant to toddler chairs, she sat in it until about age 7, but then she would flip herself out of it too many times ... literally... we decided her having fun wasn't really worth her breaking her arm or leg so we had to take it away from her. Since then however she spends her time rolling on the floor. That's about it. And it sucks, but it is what it is.
So this chair really caught my eye and in the age of social media with one click I was able to share the chair with over 1000 friends and I said ... man if I had a dispensable income.. something like that. A lot of special needs parents agreed at the coolness of the thing and then one sweet friend said, "let's fund-raise for it" I replied with a simple "I heart you" and she said "seriously". And next thing to happen is my friend got an idea and ran with it and I kid you not just last week, in two days, enough funds were made to purchase the chair.
Two days! Two days! I am still overwhelmed, speechless and have a hard time wrapping my head around it all.
This friend, Laine, found a cute bracelet to make on Pinterest, held a little bracelet making party with our bible study group and her husband Gil, super talented graphic artist, made a website. They sold a bunch of bracelets at bible study on Wednesday and Thursday a site was up and the thing went viral!
IHEARTLILY.COM Check it out! We surpassed the initial goal and Friday I was able to order the chair that will be in our home in 5 weeks. People were still requesting to donate so we let them know we already met the goal, but there are continued ongoing medical expenses for Lily and any donation will be appreciated and will be put towards good use. People are still donating! Well they are super cute bracelets! And if you got one, or will get one please show it off with the hash tag #iheartlily.

Currently Lily was denied a DMO Suit for her scoliosis so we may be using the extra money to get her the suit. This frustrates me. Infuriates me. But the longer we wait to fight the longer she goes without the support she needs to help her scoliosis. She outgrew her TLSO and the DMO is a much better option for her. We had to change insurances this year, this new one is hideous. We pay too much each month and have nothing covered. And because they don't cover it, our secondary is refusing to cover the full amount. This never has happened to us before. In fact we ordered a car seat 8 (!) months ago and have yet to get that. Lily has no car seat, we have our van but sometimes that decides not to run and she has no car seat. It really leaves me wanting to just repetitively bang my head on my desk over and over again.
But I digress. We have friends who are willing to donate $20, get a cute bracelet and lift a very heavy burden from our shoulders. So we are blessed. We are loved and I am an overwhelmed woman who is suffering from many different emotions. I may sort of seem a little like Sybil. Maybe.
I started  my period the day before Lily's IEP where we talked all about moving on to Jr. High. You think I handled that well? Nope. Thanks for thinking otherwise though.
We are experiencing some serious personal issues with work. It's a mess and scary and again I am full of a knotted stomach and heart burn.
But what has always been constant in my life is God. And he has been here for me from before I breathed life and will until my last breath. He has always been a step ahead of me. Has always proved to be gracious when I least deserved it and I know he is here again. He knows how frustrating insurance can be. He knows how scary life changes are. And he knows showing himself to me in the form of good friends and generous hearts is what helps me know it will all be OK. It will all be more than OK. It is blessed and it is good.
God is good.

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