We hope you learn something different from each of our families that take the time to share their experiences into adulthood with their daughter on this Rett syndrome journey. When it comes to being non-verbal, some may think our girls or women don’t understand or they just don’t talk to them. Meet Kimberly, 32, who loves to stay active and social and her mom René.
What is one piece of advice you would give to a Rett mom whose struggling?
Talk! Talk with your friends or family to get those emotions out. Talk with other Rett moms because they understand more than anyone else. Keeping things bottled up is not healthy. If that’s not enough, don't be afraid to seek out counseling and help from your doctor. It is never a sign of weakness to ask for help when life becomes more than we can handle.
What would you tell a newly diagnosed family? Rett Syndrome is a tough diagnosis. Please take everything one day at a time. Your world has just been flipped upside down and you have much to absorb and to deal with. Your child is the same person today as they were yesterday. But, your dreams for their future have changed in just a short time. Be kind to yourself and again, take it one day at a time.
What is your Rett Girls favorite activity? Someone just sitting down to talk with her. People interacting with her is by far her most favorite thing! She also enjoys shopping, church (she loves the singing), television and going to the movies. She is very social!
What has been your biggest struggle so far? My biggest struggle has been how to learn to appreciate each day and stop worrying so much about tomorrow. I am a planner because of my Type A personality. Rett syndrome doesn't always cooperate with my plans! Seriously, Kimberly has always been fragile. I really struggled with worrying about tomorrow and at time forgot to live for today. It took me 4 years of therapy to learn that and I still have to remind myself every now and then. Kimberly is so amazing and I want and need to focus on enjoying every day with her to the fullest!
What has brought you the most joy? Kimberly has the best smiles and giggles. Just knowing and loving her is the biggest joy and getting to be her mom is the greatest gift. The friendships we have created over the years with other Rett families have been a great bonus. My dearest and closest friends have always been other Rett moms.
How do you continue to make time for yourself?
We have nursing now during the day. I get out of the house and shop, go to lunch and some days, I just take a good nap. Nursing has been a Godsend for us. We did not have nursing until Kimberly was 27 years old. It opened up a whole new world for me. I would encourage other families to explore your local resources and options which are available to you. Don't wait until your girls get older like we did. It’s so critically important to have the support you need for everyone involved.
What do your Rett Girls goals look like as an adult?
We focus on keeping her healthy because she is somewhat fragile. We also want her to have an active social life. We try to keep those two things in balance and it has been working well for us so far. Kimberly is happy and that makes everything worth it.
We appreciate Kimberly and her mom, René for sharing their experiences with us. We hope Kimberly continues to stay healthy and active in her social life. There’s no doubt, she’s likely the life of the party!