Meet Tori! Tori 19, is just a year into adulthood and this is a whole new experience for her and her family. Tori’s mom Elisa is an AMAZING advocate for Tori and as you read about Tori below, you’ll hear just how strong this family is and continues to be with new life changes ahead.
What is one piece of advice you would give to a Rett mom whose struggling?
One? There are so many things that run through my mind with this one. There is the usual, don't be afraid to ask for help, find someone to talk to, etc., but the one thing that probably helps me most when things get crazy and a million "what if’s" start running through my head, is to ask myself this question, "is everyone that I love ok RIGHT now?" If the answer is "yes", then I take a deep breath, tap my brakes, and enjoy the moment. If the answer is no, then I stop and prioritize what and who has the most need. I think we all can get overwhelmed by thinking about the future, so just being able to find a word, a question, or a phrase that stops the craziness and helps us live in the moment, has helped me the most. What would you tell a newly diagnosed family? First, "I'm sorry". It's a heartbreaking diagnosis. Next, I'd say your life is forever changed, but you will still have lots of joy and love in your life. You can still do all the things you want to do, if you set your mind to it. You may have to get creative from time to time, but don't give up if it's something you and your family is passionate about. You will find a new "normal" and your child will bring you love, happiness and even some amazing experiences. It's hard at times, but so is life with typically developing children.
What is your Rett Girls favorite activity? Tori loves movies, music, the beach, horseback riding, etc., but the older she gets, I find she just really likes to be with us, no matter what we are doing. She loves to "people watch" and she is a lot more social than most people realize. Gossip, bawdy stories, and inappropriate music lyrics get the most laughs! She is typical in so many ways! What has been your biggest struggle so far? Getting her to GAIN WEIGHT! We struggled with the decision to place a feeding tube. When we finally did it, we expected the weight to add up easily. Unfortunately, that hasn’t been the case. With her high metabolism and constant shaking due to her anxiety, it has been hard to get her the calories needed to gain and maintain weight. She also manufactures huge amounts of mucous that make her nauseous. We have good days when she keeps her food down and days when she doesn’t. Those are challenging days but we get through them. What has brought you the most joy? Her smiles, her laughter and her good days. The fact that she exists. That she's still here fighting the good fight with real hope for treatments that will make a difference in her life. She brings us all so much joy and reminds us often how thankful we are to have her. How do you continue to make time for yourself? I've always said that my husband and I can't be good parents and partners if we don't nurture our relationship and make time for ourselves. We have great caregivers who love to spend time with her and we try to give each other time to have individual interests as well. I work out almost daily, not only for vanity reasons, but as I age, I have to make sure I'm as strong and healthy as I can be so we can keep her at home as long as possible. What do your Rett Girls goals look like as an adult? I want her to be stimulated and as active as possible. She begins an 18 plus program in the fall and we are searching for a "job" she can do that will give her purpose and get her up and out every day. Maybe she and a helper could be greeters at Wal-Mart? We have also added in play therapy and aquatics therapy along with her massage and hippo therapy.
THANK YOU so much to Tori, mom Elisa and her family for this wonderful perspective. A beautiful young lady headed into the world with tons of support, love and encouragement from family and an incredible community! We look forward to hearing more about Tori and all of her new adventures!