Meet Racheal! Racheal is 35
years old and is AMAZING!
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.
7. What do Racheal’s goals look like as an
adult?
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.
