Met Sarah Steele

Posted by Suzanne - July 6th, 2008

We had a nice long weekend.  Alan and I hosted our neighborhood’s annual 4th of July BBQ.  Neighbors started to gather around 4PM and by 11PM our street was covered with fire works and fire cracker debris.  Erin held her own the entire evening.  She found all sorts of goodies to get into.  From whipped cream and strawberries to a big basket of Dum Dums.  The next best thing to going to Ocean Shores, WA for the fourth is staying home and celebrating with neighbors. 

Sunday we spent the day with Sarah Steele and her mother Marilyn.  Sarah was diagnosed when she was a few months old and had a couple of invasive procedures that aggravated her FOP at an early age.  We got to see how Sarah’s bedroom has a lift over her bed that extends into her bathroom.  Their house is all one level so Sarah can maneuver well between rooms.  I saw pictures when Sarah was about Erin’s age and Sarah had a “comfort” position with her arms…and so does Erin.  When walking or running, Erin’s right arm stays by her side.  She uses her right had to hold objects (as in the picture) and uses her left hand/arm for different functions.  I also saw pictures of past FOP symposiums and gatherings.  I was able to see the different degrees of FOP progression.  There’s a group of FOPers who all met when they were young and now are all in their 20’s.  They all were standing and walking when they were young but now some are in wheelchairs.  Marilyn said one of the most difficult milestones that she faced with Sarah’s FOP was when Sarah’s hips began to lock up.  She then realized that with Sarah in a wheelchair, Sarah wouldn’t fall anymore.  There I heard her words while sitting in their dining room and I immediately thought of Saturday when I took Erin to a public restroom.  I pulled a chair up to the sink so Erin could wash her hands and Erin couldn’t extend her right arm to wash.  I remember thinking that this was our first challenge with an unfriendly handicap bathroom.  I really couldn’t find the silver lining in that experience, but Marilyn’s story reminded me that I probably won’t find that silver lining right away. 

We had a wonderful time with Sarah and Marilyn.  Sarah shared stories of how she stayed independent while going away to college.  I was pleasantly surprised how accomodating her university was to her needs.  They changed class locations so Sarah could attend.  They also gave her a dorm room near the RA’s room that was designed for four people.  Sarah shared it with one attendant. 

Alan and I had a chuckle over Erin finding Sarah’s Gameboy.  At home we’re so used to Erin grabbing the boys’ Nintendos that the boys are trained to wait until Erin gives it up (which is usually does without a fight).  We finally got it away from her and put it out of reach.  Oh, Marilyn and Sarah, if you are looking for it, it’s up on the top shelf in your dining room by the framed pictures.

I came home and immediately felt a wave of depression hit me.  I told Alan that I needed to lay down for a while.  I was going to lay down in our bed but then realized that I need to snooze next to Erin in her bed.  It made me feel better but I am still scared for Erin’s future.  I have learned since we’ve started with our FOP journey that I need to take in information in small bits.  If I try to take in too much at one time I get overwhelmed.  I wanted to meet Sarah and Marilyn and I can’t tell them “THANK YOU” enough for allowing us (and our messy kids) into their home.  We are now a part of their extended FOP family, and they with ours.  The more I talk and meet with others with FOP and their parents, I will feel better.  Right now it’s still tough….but it’ll get better.

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