Wow. Mother's Day is a powerful day. The spotlight right on all of my motherliness... I faired pretty well. A pretend tea party and lots of homemade cards -- a little frisbee in the yard. It was a special day.
Special days are tough, too, though... sort of milestones... also days when Sarah's daily struggles are illuminated as she cannot really join in on the fun. And her pain seems to shout out even louder.
So, I have been thinking about the months to come --- picnics, birthday parties, 4th of July, weddings, baby showers, etc. What are some ways to help make these days better for her?
These things are a little "all over the map" -- but I want to share them with you!
Try a trial run. If you know you have a picnic event or other event, take your daughter there the day before just to walk around and talk about what the next day will be like. Tell her about who you will see, what will happen, where you will eat, etc. Anything to give her time to know you have it all planned out, so her anxiety levels may be less on that day.
Twice now I have brought a volunteer helper with us to an event. She is 14 years old. Having that extra set of hands is amazing. Even if it is just to stand with Sarah in her wheelchair while I take our littlest to the bathroom. The less juggling I have to do, the less stress from me that Sarah will pick up on.
If you are having a birthday party for your daughter or attending another specials needs party, consider wrapping your gift in vinyl wall paper (available as free samples at any wall paper store)! Not prepasted though -- just plain. This way Sarah was able to unwrap a present without papercuts or getting pieces bitten off into her mouth!
Why not help get the word out about Rett Syndrome with a special contribution page on the Girl Power 2 Cure website! When my friend Jen got married last summer, she asked if I could do this for her wedding registry --- of course! We have also set up pages for baby showers, graduations, and birthday parties. Here is the link to Jen's page: www.girlpower2cure.org/Reid-Andrade.
I can put up photos, a custom message, most anything that will make the page extra special.
All of the funds raised go directly to our 2008 Research Fund for Dr. Adrian Bird.
Hope you all had a great Mother's Day and will have many great outings with your daughters this summer!