#AUBREESHOPE
her fight is our fight.
Our 3rd Annual Aubree's Hope Golf Outing will be on June 22nd - click below to learn more and purchase tickets!
Our 3rd Annual Aubree's Hope Golf Outing will be on June 22nd - click below to learn more and purchase tickets!
Tickets for the 2024 Aubree's Hope Golf Outing are on sale now! Get yours before they're gone!
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Aubree turned six years old in December. I thought five was a big birthday for her. Six is bigger than five. Switching from preschool to a big girl in kindergarten. She finally out grown 5T clothing into little girl 4/5. Lost her first tooth. Nearly mastered the eye roll.
But six…six seems to pain a little more. I would assume in motherhood there are always birthdays we celebrate with our kiddos that we feel are a big transition age. I only have 7 short years under my belt, but six seems to be the age that tugs at my momma heart. It feels different with Aubree than it did with Gianna. There is more fear and worry and heartache really.
At six kids have really embraced their imaginary play and it is so entertaining to watch. At six kids have specific interests like barbies versus baby dolls. At six the elaborate art projects start to come home from school and you are in awe of the talents your children are developing. At six the kids have special events at school like concerts. At six kids say the darnedest things. At six kids have hurt feelings from the way other kids interact with them. At six kids have big questions. At six kids are starting to pick their favorite sports and really get involved in extra-curriculars. At six the birthday party invitations come home like the utility bills every month.
But for Aubree, six is none of this. Six was starting the use of an overnight spine brace to slow her progressive scoliosis curve. Six was being notified that Aubree has the start of low bone mass, also known as osteopenia secondary to being non ambulatory. Six has involved fighting insurance to pay for new equipment because she continues to grow while her mobility remains unchanged. Six is 3 feet, 5 inches, 38 lbs that cannot move independently in her environment. At six Aubree is still in diapers.
Next time you are in a public bathroom, take a look where the changing tables are. Most of the time, they are in the main opening of the bathroom near the sinks. At six Aubree should have her modesty preserved, but instead she is exposed to all those washing their hands. And sometimes even those walking down the hallway because these changing tables are placed closest to the door. Who thinks of these designs? For at least a year now, Aubree barely fits on these -fold down off the wall changing tables. She has to be pushing the weight limit capacity as well. I usually sweat at the thought if one of these were to be pulled off the wall and the risk to her. If possible, I try to wedge my tummy under the side wall of it to offset the distribution of weight. What will we do in coming months/years when this isn’t possible anymore? Right now, Aubree is wearing the last size diaper available at retail stores, then we have to apply for medical grade diapers from a Durable Medical Equipment supplier. Insurance does not cover this….it’s a coverage exclusion item.
At six the outcome measures and information sheets at medical appointments change. The question of Aubree’s dislikes and likes, gives me severe Mom guilt. My answers are mere guesses based on her body language in the moment, which is a 50% chance of being accurate. Let’s not even talk about her favorite toy, because honestly it is whatever I find in the store that I thought might fit in her hand (her hands are petite) that is age appropriate. At least as kids get older the toys get smaller again because choking hazards are reduced, but at the same time the activities are Barbies, Legos, Puzzles, Slime- all things Aubree cannot manipulate. What is even sadder is if she does muster up the ability to request something on her talker whether intentional or by chance, she usually is not given the chance to play with It because as working parents with two children of different needs there is not enough hours in the day to delegate to 100% assist in a play session to give Aubree the same quality of life as her sister. I said it! That is the reality. Aubree’s experience of play is majority of the time limited by therapy sessions that are already in the daily schedule. And because she is nonverbal the storyline of the imaginary play is on me or the therapist to make up, so Aubree misses out on the expression of creativity as her peers showcase theirs.
At six Aubree does not receive birthday invites from classmates. At six the only extra-curriculars she attends is her sister’s. At six Aubree’s feelings are hurt when she is not included or when people talk about her in front of her. At six Aubree’s art projects are at the hands of whoever is helping her, she may dictate colors or shapes, but the placement is dependent on where the assistant moves Aubree’s arm. At six Aubree is starting to take in her surrounding more, but does not have the full capacity to ask the awkward questions. She goes where we push her. She does what we decided to do as a family. Her autotomy is held within by Rett. And my God would I love to hear what is on her mind!
At six, in fact on Aubree’s 6th birthday, we read the news that a local family was grieving the loss of their 14 year daughter with Rett syndrome. We read as the family recapped their 12 year journey with Rett syndrome; how their daughter started a spine brace at six, supplemental oxygen at 12 and deceased at 14 years old. We knew since January 29, 2020 when we received Aubree’s diagnosis from the Genetics specialist that we would outlive our daughter. We knew time was precious. We knew we would do anything we could to define the odds, but this prognosis haunts us daily. Is six the milestone birthday that Aubree is already lived half her life on earth? Or at six has Aubree only lives a quarter of her lifespan? You would ask why would you even think about that and I would reply- how could we not?!?!
News anchor Richard Engle and wife lost their son, Henry at 6 years old in August 2022. Since we were diagnosed 4 years ago, there have been countless families across the nation that have lost their family members before the age of 16. This is the Rett community’s reality, we will outlive our loved ones.
I think six has empowered us to just live, take chances, embrace the little joys, and cry when we need to cry. We do not want to look back and say what if. We do not want to miss opportunities to make memories. I wish we could say we won’t live in fear, but fear will always be a constant in our lives because there is so much not in our control and so much unknown about Rett. We just hope at six we can be empowered to make our voices louder and our drive stronger, so research gets more funding for treatment options, local government create assistance programs available to middle class families too, and that we find a solution to provide a home accessible to Aubree while she is here with us.
We hope you will please join us at the 3rd Annual Golf outing and dinner fundraiser on June 22, 2024 Carriage Greens and reception to follow at St. Domitilla’s School Hall. In honor of Aubree’s 4th Anniversary of Diagnosis Day, tickets will go live on sale Monday, January 29th, but please do not hesitate to reach out to AubreesHope755@gmail.com or message me to secure tickets.
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