One challenge I think I might face in reaching my life goals
is surgery. My goal in life is to “make my arthritis hurt less”. So, one step I might have to take to get
there is having ankle surgery. My left ankle was the first part of my body that
began to show signs of rheumatoid arthritis. My ankle has been through a lot
and I have tried many things to fix it. First, I got better shoes (Asics). Then,
I got ankle splints. And now I have custom shoe orthotics. My left ankle is so
bad now that when I stand, my foot turns in and now my ankle nearly touches the
ground. While “surgery” is a challenge that I have to face, it is also a
solution.
Another challenge I might face on my way to reaching my
goal is friends. At the time I’m writing this my social life isn’t the greatest,
but I fear it will get worse soon if I don’t get a handle on my arthritis. I am
scared to go to school in my wheelchair because what people will think of me. I
am scared to miss work because people always say I’m lucky; but they don’t get that
I still have to make up all the work by myself without a teacher. Worst of all,
I’m scared of being absent because when I come back kids say mean things like
“you are in this class still” or “why are you here”. And if they don’t do that,
they say mean things when I sit down like “you don’t belong here” or “get out
of my seat”. That kind of stuff really
gets to me, because I just want to make friends. And what really sucks is that
I can’t do anything about this.
The third and final thing I will talk about is myself. Yes
I said myself. I think I’m my own biggest challenge/obstacle. Every day I wake
up not wanting to go on, not wanting to fight the arthritis any more. Every
single day I am in pain. Every day I’m fatigued and just don’t want to do
anything. But I have one solution, one reason to keep on fighting, and that is
my family. I have an amazing brother who cares about me and loves me. I have an
amazing dad who plays with me and watches TV with me. And I have the most wonderful mom in the world. My mom comes to every doctor’s appointment, every surgery, every infusion. My awesome mom even learned to use my port, give me shots, and even set up my infusion so that I can do it at home instead of always going to the hospital. Without them I don’t know what I’d do. I love my family with all of my heart, ALL OF IT.
My goodness Parker, you are an inspiration to everyone! You are such a strong young man to keep on pushing beyond your pain, or should I say Pounding for a cure! I hope someday to meet you. You are my hero!
ReplyDeleteIt would be great to meet one day! We all must pound together.
DeleteWhat amazing strength and fortitude do you have Parker. Never give up.
ReplyDeleteGiving up is not an option :)
DeleteParker, You are one of the bravest people I know. I am the mother of a child with JA (Savannah...she will be 12 years old in three weeks). She, like you, is in pain every single day. I am so proud how you choose to keep going every day. I am so glad you share your story, because it helps me understand your journey better...and Savannah's journey. You are making a difference in so many people's lives...both young and old. You are my hero. -Jenny Nelson
ReplyDeleteI hate that Savannah is also in pain. Love and prayers for her too. She is my hero.
DeleteThanks for sharing this story. My son with JA also has pronated ankles. So far he's done pretty well with orthotics. I hope he never needs to have surgery on them, but at least he'll have confidence he's not alone.
ReplyDeleteYour son is definitely not alone. Orthotics and splints have been tried without success...stinks. Might go to a special brace before surgery.
DeleteParker... I hope you can remember that the world of school, though it seems so big- is actually a very small part of the world. And though you may not find the friends you deserve there... please always remember in your heart that you have friends all over the world - who love your sense of humor and your creativity. Friends who understand you and cherish you. The world will open up and reveal things you did not dream of..... Keep the faith. Thank you for sharing....
ReplyDeleteP.S. You do have the bets family in the world. I totally love my family - but I still sometimes wish you all would adopt me.
I think we could all morph into one big family...what do you think. I appreciate you posting these thoughts for Parker. He needs to know and believe all of this. Some days are easier than others at remembering. Love you and your entire family so much.
DeleteDear Parker,
ReplyDeleteThanks for sharing your post. I was diagnosed with JRA as a kid, but am now an old lady in my 20s ;). I remember being so scared of surgery as a child/teen and I put it off as much as possible. I eventually had it done. While it was a tough process, the pain in my ankle improved significantly and I now wish I'd done it sooner!
Sorry about all the difficulty at school. You are doing so amazing, continue being yourself and doing the things that make you feel happy. You have friends all over the world fighting with you. Take care and all the best!
-rarainbow.wordpress.com
This is Parker's mom...and he is currently recovering from reconstructive surgery on is feet, ankles and tibia bones on both sides...your comment gives me hope. Thanks so much for sharing.
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