Yes, you read that title correctly. As much as I want and wish and pray to not have Rett Syndrome in our lives I can't do anything to take it away. Today I realized that and was actually able to open my eyes up to the reasons why I am thankful for Rett Syndrome.
Scott and I were able to get out for a much needed date night last night. We don't do date night weekly or even monthly or even every other month like many married couples. For various reasons our lives just don't allow for that. But yesterday we got out, and not a second of the 4 hours we spent together was taken for granted. Thank you Rett Syndrome for teaching us how important our time together is.
At 6 am this morning a friend, whom I have only known for a little over a year now, was running in the Disney Princess Half Marathon in honor of Annie. This friend had the idea to run and "pitched" it to Girl Power 2 Cure. Team Girl Power 2 Cure was over 20 runners strong and raised almost $60,000! Inspiration is contagious. Thank you Rett Syndrome for inspiring others.
This morning I got up to find Gracie piling pillow pals and stuffed animals around her sister. Annie had been crying and she was trying to comfort her. Compassion can't be taught, it is only lived. Thank you Rett Syndrome for forcing us to live compassionately.
Annie was finally well enough to go to church today. As we were wheeling her towards her class a little girl walked out, looked at Annie and said "Annie!!!!" and gave her a big bear hug. I don't even know the little girls name. Thank you Rett Syndrome for spreading that compassion beyond our family and on to everyone that Annie meets.
Make a Wish has graciously given Annie the opportunity have a wish granted. 2 volunteers came over today for a Wish granting ceremony. Annie chose Disney World! In the 8 years since we have been parents we have never been able to go on a family trip together. Thank you Rett Syndrome for making a family wish come true.
Of course in a heart beat I would chose to take Rett Syndrome and throw it far, far away, out of our lives forever. Of course I hate to watch my child suffer day in and day out for the 6 years that this disease has taken over her life and ours. Tomorrow we will once again pick up our swards and fight against Rett Syndrome but while we're waiting for our victory we will choose to see the blessings our situation brings.