My dad has made many recent comments on how he wished he had a picture of when we used to go ice fishing. Out of 3 boys, it was I who was his (ice) fishing partner throughout the years. We would go alot, just he and I. I drew this, 'Gone Fishing' for him as part of a Christmas gift, and then framed it.
I loved it out on the ice. Afterwards we would go to this little restaurant for hot chocolate. Blue building with a big white captains wheel hanging on the front. My hot chocolate was served in brown mugs and there were always many fisherman bragging about their catch of the day.
Everyone else had fancy shanties, but we stuck with our buckets that dad had made for us: duct tape, rope and some padding. Besides watching me play soccer for 10 + years, (ice) fishing was probably the only thing we really shared. My dad says that some of the old guys sometimes ask about me. They remember me because I caught the most fish ;)
Every year it gets a little harder and every year I feel like my parents and friends see the fast forward version of my year.
They see my yearly progression in one visit at the end of the year. It must be hard for them to see. My parents try not to cry, but out of the corner of my eye I can see them watching me which then leads to tears.
It's not that they think I am less because I have a disability, but it's hard for any parent to see their child struggle. I have many relationships that I have made in different stages of my life. I have friends that have only known me with HIBM, I have friends who only knew me when I played soccer, but my parents have known me since the beginning. They seen me running as a little child and into teens and into young adult, and now they see me slowly deteriorating.
I try to see it from their perspective and how they themselves deal with it. I think they have experienced some growth in realizing the truth of it, accepting it and then learning on how to communicate their feelings. Many patients tell me that their family experience denial and they don't want to face it. It takes time. It takes time just to realize it is not some colossal joke.
Ten years ago my parents thought I had one leg longer than the other, thus the reason for the limp. No one could expect what was bubbling underneath. No one could know and for 6 years not even I did. I love my dad and I know how much it hurts him. He's opened up about it and cries in front of me. Sometimes we will be on the phone and he cries. It hurts to see me go through this as deeply as I could imagine any parent would feel.
A common statement I hear from both parents is, "but, you are so young..."
My dad sometimes apologizes that they were not more pro-active and is full of regret...about many things...but like I tell him it is not about what you did or didn't do in the past, it is about today.
This journey is not just difficult for me, but all those around me that it touches. Some do nothing, some want to, but don't know how to and some keep a shield over it to lessen the grief. However one handles things as long as there is a journey toward the truth of it then there is progress. Everyone has a different speed and it about understanding them and not just myself.