August 2012 – Challenges and Changes

If I were to rate Marcia’s speech ability on a 1 – 10 scale, I would be hard pressed to go as high as a 3.  The progression of her speaking difficulties is in year four, and the rate of “decline” has been something my family has been able to adjust to because the change has been “gradual”.  In the beginning, helping with an occasional word was pretty simple since the context of what she wanted to say was simple to follow with the rest of the message.  Now it’s nearly every word that is hard for her to say, and she’s using her hands to point and gesture to help her get the message across.  But God bless her, she tries so hard.  For me, it’s becoming more frustrating because we can’t help her communicate her thoughts like we once did.  Marcia still lights up when she sees a friend or family member, which is so great to see.  While she can’t maintain that adrenaline for very long, she is content to be part of the crowd and listen and laugh whenever possible.

We went to Hershey Park a couple of weeks ago, meeting one of my oldest and closest friends (Tim Elder) and his family.  This is a weekend that she has always planned in the past, but I’ve taken on this year at her request.  She’s enjoyed being with the Elders and she’s always loved the roller coasters, especially since our son, Ryan, began to share Riley’s love for the thrill the roller coasters provide.  But she couldn’t handle them this year.  She tried Friday night, and again early Saturday morning and both times the rides gave her headaches.  She and I mostly followed the kids around the rest of the weekend and waited for them (and sometimes me) while the waited in line for the biggest and newest roller coaster rides.

The other more noticeable change has been with just the pace Marcia is approaching just about everything she does.  The four of us went to Johns Hopkins this past week as we began looking at colleges for Riley.  Walking the campus as part of a tour group, Marcia was usually bringing up the rear.  She does keep up, but she’s just slower than she used to be.  Same story at Hershey.  I would always walk with her, trying to keep the kids, group and destination in site.  And she is noticeably more cautious on stairs too, which is a good thing.  Marcia is clearly aware of her safety, and is patient to make sure she’s comfortable with her approach.  After our visit to Hopkins, we went downtown to Baltimore’s Inner Harbor for lunch.  As we walked around the shops downtown, Marcia seemed to enjoy the casual pace, but she didn’t want to take an escalator, saying she couldn’t do it anymore.  I held her hand as she got on and off the escalator, but this isn’t something she would try on her own.

What is becoming a consistent message and theme with Marcia is she still tries hard to do as much as she can and is still the sweetest woman on earth.  I enjoy taking her with me to the store, to run errands, etc… as she is always energized by just getting out.  I’m touched and so impressed with what others tell me about her.  Marcia just got her class schedule for the fall schedule with the YMCA and HeathQuest and she looks forward to teaching those classes so much.  And I get countless remarks from those who attend her classes about how much they care for her, love her and her classes in spite of her speaking challenges. 

Marcia knows what she wants to do, she just has a hard time articulating this as effectively as she would like.  Choices often confuse her.  Earlier this week, I watched her knock over a half gallon of milk, which also knocked her cereal bowl on the floor.  Marcia didn’t really know what to do first.  Her first reaction was to pick up the cereal bowl.  Meanwhile the milk container continued to spill mile all over the kitchen counter.

Having received Marcia’s new class schedule, I posted her transportation needs on the “Team Marcia” Lotsa Helping Hands website.  Within hours, the schedule started to fill up by countless volunteers.  If there is a bright side to Marcia’s illness, and I’ve said this many times, it’s the outpouring of support by so many busy people who so willing to support us in so many ways.  I can never adequately thank all those who help, but I try to send words of thanks every week as that makes me feel like I’m doing SOMETHING in return.  As Christine Walker posted with the creation of the website:  "Sometimes we are called to be the hands and feet of Jesus to others..." and there are so many who are answering this call for us.