Rett Syndrome: One year in…

I wasn’t sure what I was going to write today.  Maybe about what I’ve learned in this past year, how I’ve grown, how Lily’s grown.  I didn’t know.  But thankfully, this morning I received a beautiful email from my cousin (who also happens to be the first person I shared Lily’s Rett diagnosis with, which was exactly one year ago today) so I will share what she wrote:

I think and pray for you and Lily just about every day and am thankful for your insightful and honest blog entries. I have been thinking of you this morning as I know it is the anniversary of Lily’s diagnosis and the day your life was turned upside down. Congratulations on making it through this insanely difficult year!! I can’t even believe what you have accomplished in just 12 months since that day…becoming an expert on this very complicated disease, mobilizing outstanding resources for Lily, moving in NYC, searching and enrolling in a new amazing preschool, custody battle victories, fundraising, advocacy for Rett and even a battle against rude and obnoxious honkers.. and the list goes on… Remember how stressed you were a year ago about all these things.. hallelulia! they are behind you.
When I received this email last week from Rettsyndrome.org, it gave me much hope and excitement that a cure is possible and close! I had heard about these results but for some reason it really hit me when I read this and heard about the energy and money going into further research on this drug.
I made a donation today to this research fund to honor Lily and her mother 🙂 and recognize the anniversary of her diagnosis as well as her 4th birthday! I donated $123.14 – a dollar amount that reflects the date of her diagnosis.
Although I am sure in many ways, this is a difficult day for you, I am writing to remind you to pause today and recognize your amazing accomplishments this year!! And thank the good Lord that this year is OVER!! Onto year 2… good things are to come!
My cousin is a private person so I won’t call her out publicly here.  But wow, thank you beautiful cousin of mine – for being a source of inspiration, knowledge, unwavering support, and  for writing the words I needed to hear today.  I hope you don’t mind me sharing this…
Love,
C and L
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4 thoughts on “Rett Syndrome: One year in…

  1. Wow! What a brilliant comment. Your cousin articulated what so many of us have been thinking. I’m eager to know what the drug is that is referred here. Much love to both you beautiful ladies.

  2. Love. love. love!!!!!

    On Fri, Jan 23, 2015 at 12:40 PM, blueberriesandgiggles wrote:

    > mommabear0208 posted: “I wasn’t sure what I was going to write today. > Maybe about what I’ve learned in this past year, how I’ve grown, how Lily’s > grown. I didn’t know. But thankfully, this morning I received a beautiful > email from my cousin (who also happens to be the first ” Respond to > this post by replying above this line > New post on *blueberriesandgiggles* > Rett > Syndrome: One year in… > by > mommabear0208 > > > I wasn’t sure what I was going to write today. Maybe about what I’ve > learned in this past year, how I’ve grown, how Lily’s grown. I didn’t > know. But thankfully, this morning I received a beautiful email from my > cousin (who also happens to be the first person I shared Lily’s Rett > diagnosis with, which was exactly one year ago today) so I will share wh

  3. What a beautiful message from your cousin! If you saw the mountain you had to climb this past year, you would have fallen into despair. Yet this year is behind you, and you climbed, you climbed mightily! God bless you and Lily on this journey. Please God, a cure!

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