Avleigh's Journey

We’ve had many battles over the years but they always had some type of plan for treatment. Whether it was medicine, equipment or a procedure, there were ways for us to manage whatever symptoms Avleigh was experiencing to get her the quality of life we always strived to provide for her. We just want her to have a happy and enjoyable life where she’s enjoying those around her and doing the things that she loves the most. Looking back on these last 6 years, we know that we have given her a great life. She was gifted with a trip to Disney from Grant A Wish, through Troop C, where she was able to ride the kiddy rides, see her favorite characters and enjoy her stay at the most amazing place, Give Kids the World. Another life experience was another gifted trip to Whistler, Canada where she was able to ski on the beautiful mountains, ice skate, explore on a snowmobile and meet her PCH friend Layla. We took another trip to Canada, but this time was in Niagara Falls for a PCH meet up where we saw the breathtaking views of the falls and spend valuable time with other PCH families. Last summer we took another trip to Texas to meet up with more PCH families where Avleigh was able to experience the wonderful park of Morgan’s Wonderland and enjoy the perks of San Antonio’s River Walk. These little trips are just the beginning of what we consider to be her bucket list.

I’m very proud to say that we were able to keep her healthy enough to be able to participate in two years of public school. We didn’t send her so much for education, but more to help her to feel “normal”. She adores other children and loves watching them interact and play. I truly believe that school helped her mentally enjoy these last two years of her life. She has bonded with the school staff and all the children at the school. I say school, because it’s much more than just those in her classroom. At school events, sports events or even while grocery shopping, we often get stopped where a kid will wave, or tell Avleigh hey and say that she is their friend. It makes me very proud and happy how well these kids have accepted her and don’t see her for her disabilities.

Although I knew this time would come with the progression of PCH, I don’t think in my mind I thought it would ever really become reality. It’s those words “All we can do now is just keep her comfortable.” As a mom, this is very hard to accept, especially when my Timehop comes up and shows me all those happy moments, all the smiles, all the achievements. I am faced with many decisions that no mom should ever be presented with. Our hearts are broken! But the fact of the matter is that Avleigh’s little body is really tired. She still looks at us with love and occasionally gives us a little smirk, but her special character is slowly diminishing. We are giving her comfort, all of our love and prayer during these difficult times.