CLICK HERE to Light a Candle for Gracie and Any Other Soul in Need
Light as many as you would like - as often as you would like.

Wednesday, March 23, 2011

Small Miracles Blog Hop #2

If you haven't checked out Franchesca's new small miracles blog hop, head over to Small Bird Studios and check it out.

On March 12th I attended a memorial service for one of my students...a young man, almost 21 years old, with multiple disabilities, who passed away due to complications of pneumonia.  The certified lay minister that conducted the service also did our Gracie's service 19 months ago.  As I sat in the very back pew of the very tiny country church, I kept thinking about something that Becky said to us when we met with her before Gracie's service; something along the lines of... 'There's a funeral section in my book.  There are some stunning and thought provoking passages on those pages, some that I have used multiple times already, and some that I will probably never use.  But I always assumed, until you called, that I would never have a need for the children's service.'  She never expected to do a child's service, yet here she was doing it for a second time in less than two years. 

As she conducted the service last weekend, I heard those words over and over again in my head.  Thankfully, I was jerked back to reality as she read a prepared statement of appreciation from the young man's mother.  Appreciation to all who had been part of her son's almost 21 years.  But it was the number of times that she thanked the teachers, classroom aides and itinerant staff (PT, OT, speech, vision support, etc) that really caught my attention.   

My mind continued to travel for the remainder of the service.  I thought intensely about what it is I do every day.  I thought about the fact that time and time again I have worked myself to the point of sheer exhaustion over the last 15 months, most of the time finishing my days disgruntled, frustrated and resentful.  Disgruntled and frustrated by (and usually resentful of) the people the parents that are completely unappreciative of what we do for their kids...the parents that have no appreciation for the fact that two physical therapists juggle 90-100 kiddos over the course of the academic year.  Frustrated by the parents who are not home week after week when I show up for scheduled visits, even after I call to confirm.  Frustrated by the parents who use their special needs child(ren) to gain social status or keep the spotlight on themselves...parents who seem to find every reason to limit the introduction of things that will help their children improve.   Frustrated by the parents who find every possible reason to not stretch their kids for 5-10 minutes a few days a week, yet expect me to spend 30-60 minutes stretching them once a week.  Frustrated by how ridiculously difficult the PA Medical Assistance program make it to get approval for equipment necessary to maximize the untapped potential in these kids.  Frustrated by the classroom and personal care aides that are there simply for a paycheck and do the bare minimum with these kids every day.  Frustrated by the parents to instill no discipline at all in their kids simply because they are not 'typically' developing (but able to recognize the difference between right and wrong).  Frustrated by the adults that come into my office and expect me to make them better without any effort on their part...they just want to lay there while I wave my magic wand.  Frustrated by the adults who come into my office completely dependent on pain medication and oozing with gloom and doom; they come in with the mentality that they will never get any better or that in order to get better I have to cause them excruciating pain.  (Guess what?!?  Most of those people don't get better, regardless of the tactics that I employ.)  Hateful toward the parents of a teenage girl that I evaluated this week in my office; when I lifted her shirt to visually examine her back, I was greeted by multiple large, well healed scars across her back that were quite obviously the result of being severely beaten with some sort of strap. 

Then I think about my small miracles...the things that make my job worthwhile.  The parents who do express appreciation for what we do for their kids, despite the fact that the system is not perfect.  The victories over Medical Assistance that allow us to eventually get some awesome equipment for our kids.  The little girl with Down Syndrome who rubbed my pregnant belly and said "baby" with a huge smile....and the one that hugs me goodbye and says "I lub you Dudan".  The 5 year old who works on jumping for a year or two and then suddenly gets it...everything just clicks and she becomes a jumping fool.  The 18 year old girl with terribly misshapen feet and multiple other physical disabilities who 'walked' across the room for the first time year when we finally found the right gait trainer for her (and the right motivator - it turned out to be a man!).  The 18 year old young man with Cerebral Palsy (and very little cognitive deficit) that discovered (with help from myself and his aide) that he could independently use the city bus to get to the local college campus and navigate the campus with the help of a college-provided aide...and convinced his parents to let apply for enrollment.  The 4 year old with terribly limited motor skills that is finally able to roll over by himself, and the enormous smile that comes with it.  The 50 year old lady with a new knee replacement who has become terribly frustrated with what she interprets to be a plateau in her progress, then suddenly breaks through that plateau and takes off again and can't stop smiling because she's so happy with the new progress.  The 78 year old lady who came for therapy because she was weak and falling several times a week; she has been done with therapy for 2 years now, but still comes for exercise 2x a week so she 'won't get old again.'  She hasn't fallen in over 2 years, says that she is stronger now than she has been in 30 years and feels safe to live alone.  And, of course, the miracle of my own little rainbow, Jenna, who melts my heart each morning when she smiles up at me from her crib.

Wednesday, March 9, 2011

Please Pray

I cannot begin to imagine what this family is feeling after losing 7 of their 8 children in a fire overnight...please include them in your prayers.

Monday, March 7, 2011

In Retrospect...

I am starting to wonder if we made the right decision in agreeing to be the local Ambassador Family for this year's March for Babies.  In the early days following Gracie's death, my husband and I agreed, that while we certainly needed to grieve, we ultimately needed to find a way (or multiple ways) for Gracie to live on.  We needed to be able to find the positives that could come from our loss. 

Being an Ambassador Family is certainly one of those positive spins.  It is allowing us to bring the spotlight to stillbirth; the fact that we are doing so in a forum that primarily focuses public attention on ill, but living, babies is just an added 'bonus'.  But it also intensifies the normal, every day thoughts and feelings. The March of Dimes created posters to be distributed locally...

While I don't necessarily care for the design/layout of the poster, we are working on distributing them all over.  We are going for high visibility.  Of course, I have one hanging in my office where all of my patients can see it.  I also see it...all day.  I see it every time I bring a patient back from the waiting room.  I see Gracie's picture every day at home, but this is different.  So very different.  It's almost like pulling the scab off a cut every day. 

I know that my husband shares in the philosophy that we need to find/do good in our loss, but I think this Ambassador Family experience has been even more challenging for him.  He just really seems to be stuck in a dark, rotten place these days.  He loves Jenna with every fiber of his being, but with those same fibers, he misses Gracie so much that I think sometimes it physically hurts him.  Of course, he also sees the poster every day; hopefully it will be a little better for him once the March for Babies is over this year.  Until then, I wonder, just a little bit, if we perhaps bit off more than we can emotionally chew for now. 

If you would like to make a donation toward our March of Dimes fund raising initiative, you can do so by clicking on the banner at the top of the page.  If you are not part of a team walking in the March for Babies and would like to help us with our fund raising, feel free to grab my button (top left) for your blog.