Safety is our number one priority with Erin (as with Miranda). We do want we can by instilling safety measures to reduce the likelihood of a serious fall that could lead to permanent restriction/damage to Erin’s body. Not only does Erin have her Halo helmet but a big part is communication with those who take care of her. Before Erin’s preschool started, both Alan and I met with the staff of the school to talk about FOP and what precautions were needed to protect Erin. I’ve blogged about this before and even posted “Erin’s Medical Issues” here on the site. Just so everyone knows, Karen actually wrote the document for Miranda’s daycare and I simply amended it to Erin’s needs. For the most part both girls’ requirements are similar.
School is just one part of Erin’s life. Alan and I rarely leave her overnight somewhere. However we need our time to ourselves too. My brother, Sean, watched the kids for a weekend for us when we went away for our anniversary. I knew Erin was in good hands and she was in her own environment. Our anxiety wasn’t too high for the weekend; although we did call to check up on everyone. I think we were more concerned that Uncle Sean would still have his sanity after the weekend (love ya Sean!). For the first time in a very long time we have had a babysitter come in to watch the kids for a few hours. Once again I felt perfectly fine with our babysitter’s capability to handle the children and to protect Erin. Erin does well in her own space, on her spot on the couch, with all seven of her blankets, and her toys. Erin is getting used to Mom and Dad being away for a few hours. Plus when the babysitter comes over they get pizza, cookies, and soda….ohhhh…yummy treats! Our biggest challenge was this previous weekend when Grandma took the kids for an overnight stay. It was the first time Erin slept away from her own bed without us. She had her two older brothers and that helped. She was so upset when she realized that she had to go home but Grandma stayed. Overall, we’re making progress! I can only hope that Alan and I can have more date nights in the future.
I was planning on blogging about the babysitter and the overnight stay. Then I read an email from a mother of a teenage FOP boy yesterday that nearly stopped my heart. With her permission, here is a copy of her email to FOPonline:
What would you do?
Hi friends,
I know I have not been on for a while, FOP has been quiet and I have been busy planning our very successful fundraiser. Which was amazing, I’ll tell more later. Right now I am very concerned about my son Cody, who is now 13 and in 7th grade. Cody never tells us when he is made fun of or bullied. Most everyone likes him but there are always a few insecure kids that call him names and make fun of the ways his arms are locked. Today, a kid punched him in the arm and hit him in the knee because Cody moved his chair in band so he could see the instructor better. Well, the kid was texting (and should not have been) and didn’t want the teacher to see. He thought Cody moved the chair on purpose to get him in trouble and the kid punched him and hit him with a drum mallet right on the knee cap. The knee is now swollen and we are very fearful it will lock up. We gave him a big dose of prednisone and have ice on the knee. I need advice from you my friends, Do I let him choose which way he wants the knee to lock up if it does, or do I decide or do I let nature decide or an orthopedic decide. And which would you choose, straight, bent or slightly bent? So much is going through my head right now, can you tell.
Would love to hear your thoughts.
Jen
When I read Jen’s email I felt all the air get sucked out of my lungs. My mouth hung open and I was in a state of shock for a long time. I told Alan about it and I could see the rage build up in his face. Here we are testing our trustworthiness of others with Erin and we hear this story. Then I was thinking that boys are more likely to be in a physical altercation than girls. Still, it’s not easy being a tween/teenager but add FOP to it….it must be a very difficult time in their lives. Alan and I are thinking about Cody and his family during this time. Everyone is hoping no permanent restrictions come about this incident. Other FOPers have concurred that they have had hard blows to their bodies without developing a FOP flare-up or restrictions. And yes, Cody’s parents are pursuing legal action. Cody’s altercation has stirred up a lot of emotions in the FOP community. As a parent I am completely heartbroken. We can’t protect our children 100% of the time but our hearts tell us we need to.
Finally, sadly the FOP community lost another young FOPer. Kimberly Messnick (23 years old) in New York passed away recently. No details of why have been given. Although someone mentioned that Kimberly was hospitalized in January. She was struggling with numbness in her legs and breathing. Kimberly and her mother are a part of a few known mother/daughter pairs who have FOP. Our sympathies and condolences go out to the Messnick family.
Not only should assault charges be brought up on the boy, but civil action should be brought against his parents. If anyone exacerbates or accelerates an FOP flareup, they should be responsible. If Erin has a few years of mobility and they are robbed by someone else, you can bet your life that they are going to be hunted by lawyers until we have every last penny.
FOP families have pent-up rage, so you do NOT want to unleash it on yourselves.