I think a lot. A whole lot. Sometimes I wish I could stop thinking. I constantly have things I'd like to share, things I'd like our Team to know and understand. I want to stay in the forefront of everyone's mind, because I want everyone to care, believe and pray as fervently as I do for Blake. I wish you all could really SEE the struggles she faces every minute of every day. I wish you could FEEL the unfathomably deep desire we have to see Blake well, as we imagine the unspeakable JOY that could come if the cure is found in her lifetime. I wish you could FEEL the despair and heartache we experience regularly. Not becuase I want anyone to have to feel that way (trust me, I wouldnt wish it on my worst enemy); but, I think, even if you could just feel it for a little bit. If you could precariously walk in Blake's pink Converse just for a minute, you would never stop praying. You would all truly "pray without ceasing." As I considered this, I thought... Perhaps that is why we meditate on Jesus' sacrifice each week. He wants us to FEEL what he felt as best that we can. FEEL the love He had for us when He died on the cross. Because, then, we'd never stop thanking Him, never stop seeking Him. By remembering the suffering, we better understand His love...Which leads me to my next thought...
I also simultaneously wish you all could FEEL the depth of love we have recieved from our community. Some we've known forever and some we barely know at all or just met. It has truly been overwhelming. I never imagined how deep pain could carve it's trenches, but conversely, I never considered how much deeper then, that LOVE could have the opportunity to swell. The deeper Rett digs, the deeper LOVE surges. It is indescribable, the love and support we've received and felt. 2014 was awful for us in many ways, but thanks to you guys, it was wonderful in many ways too. I guess you could say, "It was the best of times, it was the worst of times."
One of the things I have struggled with these past few months is writing Thank You notes. I take Thank Yous very seriously, but with the true outpouring of love, gifts, and support combined with my/our limited time and my desire to make sure each note conveys perfectly our level of thankfulness, I am painfully behind on thanking you all with a proper hand-written note. I have, however, managed to keep an on-going list -- hopefully, it's comprehensive, and I've not missed anyone!! My New Years goal is to write each of you, that has gifted us with money and support, a proper note (or emailed, if you've donated through GoFundMe). It may be 2016 before I am done, that's how much we've been given, and how far I am behind. Eeek! I feel guilty and amazingly blessed all at once!
Please accept this post as a "I owe u", and know just how deeply thankful we are for each and every one of you. Especially to those who stepped up in big ways to help spread our message and help support our Blake and our cause for a CURE in 2014! Thank you, specifically, to those who went above and beyond to sacrifice their money and time #ForTheSakeOfBlake. Some families, gave to Blake in leiu of exchanging gifts this year (unbelievable!). Some gave gift cards on a purple Christmas tree, just to make sure we had an extra measure of cheer despite our ongoing pain and struggle (incredible!). A couple families gave outrageous amounts of money to our GoFundMe campaign, or wrote us checks or sent us cards with gifts of cash, or ordered oils from me or a bed made by Ben. One family is giving us their mountain condo, just to give us a little respite free of charge. (astonishing! And I am still reeling from their level of generosity). A lot of you Christmas shopped through Amazon Smile so a portion of your purchases would go toward Rett organizations, in search of a CURE (thank you, and please keep shopping through Amazon Smile throughout 2015!!). A few have told us that they plan to give to RettSyndrome.org or Rett Research Trust in honor of Blakely at the end of each year (awesome! wonderful! fabulous!). To say we are thankful, grateful, overwhelmed, humbled and above all BLESSED, is a drastic understatment.
Thought it never seems enough, THANK YOU to everyone who is loving us, praying for us, giving to us, supporting us #ForTheSakeOfBlake. I am praying for big things in 2015, please join me. We love you and are so thankful for each of you!
Philippians 1:3 - I thank my God every time I remember you. (NIV)
I Thessalonians 5:16-18 - "Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.