At this point, my focus is on giving my daughter, Elouise, a happy childhood and letting her experience as much as she can in life, which is very difficult due to her lack of mobility.
Making Memories
Recently, we took her skiing using an adaptive ski service, which took her up and down the slopes in a special chair with three assistants. She loved it.
We set up a track in our home to which she is attached via a secure vest and is able to walk with her dog and dance with us!
We try to go to different places so she can see the beach, the mountains, and more. Additionally, she loves animals, so we try to do as much as we can around them.
The Challenges We Face in Giving Our Daughter a Happy Childhood
Friendships
Although most people are kind, Elouise has no close friends who come over and spend time, which is very sad because she loves people. Even more difficult is how she and, to a degree, we as her parents are excluded. We know it’s not done intentionally. It’s just the way it is.
As an example, Elouise can’t do sleepovers at someone’s house; she just needs too much care and oversight. We’ve done a few at our house in earlier years, but after a while, the kids lose interest given her inability to do most everything. At age 14, this is even harder, as friendships are a key part of having a happy childhood.
This saddens me more than anything else does. Without her family, she has very little.
Future Considerations
We also have to make plans for extended family to be there for her if something happens to us, and that is a lot to ask of anyone.
The last thing we would ever want for her is to be in an institution, which is a factor every parent of a disabled child has to take into consideration and plan for.
Living in the Moment & Providing Protection
I try not to think about what Elouise is missing; I just try to enjoy the moment. She is a happy child and that makes things much easier.
Elouise is cognitively at an age-appropriate level, although her exposure to things kids her age see is entirely different given her lack of emotional ability to process or understand certain things. I don’t know to what extent she grasps her situation other than I don’t think she knows any different.
Her memories from her younger years when she was more mobile are limited.
I never see her show resentment or anger toward her situation. She is extraordinarily unaffected in this respect, which is a blessing and helps in ensuring she has a happy childhood.
In some respects, given her very limited life experiences, she is shielded by many of the trials, difficulties, and dangers that kids her age experience these days. I don’t know if that’s a blessing, but her life is surrounded by positive things and she is very protected from the world. This is largely due to her inability to make any decisions for herself given her level of maturity, lack of physical capabilities, and the constant adult supervision needed to take care of her.
We are very mindful of making sure she is surrounded by kind and trustworthy people, and frankly avoid situations or exposure to any unnatural or negative influences currently rampant in society today. As such, our life has become somewhat reclusive, hers even more so, but I don’t think there is an alternative. This may be common to many kids and families affected by similar neurological conditions, not just H-ABC.