1.What is one piece of advice you would give to a Rett mom?
Patience is a virtue and take it one day at a time!
2.What would you tell a newly diagnosed family?
There is incredible joy in small moments. Listen to your daughter by how she communicates with you and believe and trust in yourself that your decisions for her are what's best. Don’t second guess yourself, instead, remember, you are loving them, caring for them and they know it.
3. What are some of Racheal’s favorite activities?
Racheal loves music therapy, being with her family, and swimming.
4. What has been your biggest struggle so far?
Communication is a challenge but we’re working on it. Breath holding and excessive salivation continue to be challenging along with getting around in public including restrooms, sidewalks etc. We still have so much more to do to help others learn and understand all about our beautiful girls and what they need to live life to the fullest.
5.What has brought you the most joy?
Racheal's smile and how she looks at me. I know she loves me so much just by her eyes and how she looks at me and to see her enjoy most of what we do together.
6. How do you continue to make time for yourself?
Time for myself, what's that? You do have to take a break. Family support is critical and we have respite care from time to time. Racheal really enjoys getting to go to camp each summer.
Goals right now are working on purposeful hand use and further developing her communication. We are also focused on getting her involved in community activities and volunteer work when possible.
Special thanks to Racheal and her mom Cheryl for sharing a little about themselves. We look forward to hearing more about Racheal and what she’s up to and all the wonderful experiences yet to come.