The past three years after Harry’s diagnosis have been a whirlwind for me. In some ways, I feel like a different person. Looking back to the beginning feels like looking in to the dark ages, and I feel like I’ve been molded in to a warrior (see above picture) in the process. Well, maybe not molded – that gives the impression it was a gentle process. I have been forged, through bending, breaking, and ultimately set in strong metal. It hasn’t been easy, but my foundation is solid.
The same process has gone on through my assembling Harry’s team. Over time, I fought to find, edit, and keep certain professionals around Harry to support him in the best way possible. It’s a learning process, and it’s constantly changing. Insurance never supports me unless I fight, but good for me (and bad for them) that I love a good fight!
For my BSN capstone project, I knew I wanted to support families in a place that I didn’t and still do not feel supported. I know there are countless families out there who are not as tenacious as I, or as medically educated. I set out to gather members of Harry’s team, and people like him, to put in one place for parents to get more information from. I hooked up with the special education department in Harry’s school and joined one of their parent nights. We set up an exposition where parents could visit different professionals that might help their child. I was proud of the event, even though it was lightly attended.
It’s so hard for parents of any child, let alone a special one, to find their way sometimes. Kids don’t come with a manual, and we often have to claw our way through difficult times figuring our way out as we go. First children are the guinea pigs – especially if you find yourself having the first child out of your group of friends. Eventually we figure it out, and we are stronger from the struggle. It’s hard to look back on at times, but I am certainly proud of the warrior I have become!