Friday was the perfect end to a week full of therapy appointments and a 3 hour meeting with all of Reagan's therapists to set goals and action plans for her over the next year. We were in need of some fun time and just hanging out so Reagan's Tante (Aunt in German) Erin and cousins Evie and Ellie came over to play. I love that my daughter's first cousins (most of them) live so close and that they are going to grow up together like sisters.
Here is a group picture: Evie, Reagan, Lauren & Ellie
Ellie (6 months) & Lauren (5 months)
Evie and Reagan at 2 yrs 4 months
And for comparison, Evie and Reagan at 7 months :)
I am trying to keep on trucking today and find the positives. In the last 24 hours I have heard of 2 Rett Angels passing away and also a newly diagnosed Rett Angel at 20 months. My heart is breaking for all of these families. The news of the passing Angels seems to rip the band-aide of my healing wound. Its moments like this that I want to give up hope. That I am quickly reminded that my dream of a cure might not happen and that it could be my daughter passing away so young. I hate Rett Syndrome and the pain that it causes our children.
I am going to focus on my 10 minutes with my sweet angel last night and not worry about tomorrow, it's just sometimes easier said than done.
The best ten minutes of my day was right before Reagan's bedtime. She was not feeling a 100% today, between some stomach issues and also cold-like symptoms, so their was a meltdown after her bath. I took her to bed and held her in my arms and then we laid down. She stayed wrapped in my arms, perfectly content and happy. I loved the snuggled time with her and appreciating the moment. I don't know what tomorrow brings for us, but I know that today I got to spend 10 minutes of uninterrupted time holding my Angel and showing her how much I love her.
I have been trying to pace myself into the entry of the world of Rett Syndrome since that fateful phone call of Reagan's diagnosis just 4 months ago. You see, my personality tends to be one that becomes very involved, or maybe obsessive is a better word, in my interests. The diagnosis, followed by the birth of our second daughter the next day, has kept me very busy. I didn't want to bite off more than I can chew. However, I think that I have had enough time...it's time to be involved and fight for a cure!
This evening I had the pleasure of meeting a fellow Rett Mom from the Houston area (Kella) and IRSF Special Events Program Manager, Jenni, to discuss an upcoming fundraiser. I am excited to join these ladies, and many others, in planning the 2nd annual Texas Strollothon in October...more details to follow in the upcoming month!
I can not change the diagnosis for my sweet daughter, but I can fight for her. I can not sell our house and give all the proceeds to research, but I can help bring awareness and funding to the cause by asking for help. I can not hear my daughter say "I love you, Mommy", but I can see it in her eyes...and that's what keeps me going. I hope that becoming involved will help me feel like I am contributing to the cure as well as let my wounds heal.
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.