LGMD L-M-N-O-P

Thursday was a day of many letters:

• A diagnosis:  LGMD–Limb-girdle muscular dystrophy, likely type 1A w/ as yet unspecified myopathy.
• A registration: You actually complete and sign papers for your child to be a part of the MDA
• A prescription:  We got an Rx for PT
• A request for intermittent leave:  FMLA request from my employer so I can take my son to his various appointments without fear of job action against me for too many absences

Yesterday I received a telephone call from the lovely Kelsie from our local chapter of the Muscular Dystrophy Association.  She actually put words around a thought I have been kicking around in my head from Day 1, and it made me feel–know–I’m not the only one.  She called to acknowledge our family’s fundraising for the upcoming MDA Muscle Walk, and ask basically who we were.  The MDA, it seems, knows its clientele quite well, and she was wondering who the new kids on the block were.  I’d told her we just had officially been diagnosed and registered the day before as a matter of fact, so her timing was uncanny.  She told me a bit about what to expect on the day of the walk, including the fact that we would have the opportunity to meet other families.  On Day 1, I said to my husband before we even hit the parking garage that we were now one of those families. We are going to learn a whole new language and meet a cast of characters we don’t want to have to know.  Because I have a terrible potty mouth, I said in my pretend meeting other MD moms introduction conversation, “I’m sure you’re lovely, but I don’t want to have to fucking know you.”  Kelsie from MDA seems like a much more refined individual than I, so her version of that was less off-color, but she very nicely captured the essence of meeting similarly situated families thrown together by genetic mutation.

One of my tribe mates, who herself has navigated serious illness and owns a remarkable tale of recovery, said this of our diagnosis day:  “I’m not sure if you got good or bad news or just the proper name of your demon. I hope it puts you on the path to help him and rest of your family.”  #nailedit

What Should I Wear?

This ridiculous question is what pulled me from the warm world of my dreams at 3:17 am today.  Spring break has just been broken.

What should I wear? somehow invaded my subconscious in the pre-dawn today.  I did fall back asleep fairly soundly after it, but I can’t shake the question in daylight.  I am not superstitious (although I do wear the same shirt and earrings for every Packers game until that particular garment brings loss upon our beloved green & gold in which case the shirt gets cast aside as if plagued by locusts–the earrings remain constant however).  I am not superstitious, but I am a sentimental observer of moments, dates, items, anniversaries of events–the annual anniversary of when I met my husband, the marking of the passing of a loved one, the takeoff of a plane as I leave and then return to my loved ones, etc.  I can tell you what I was wearing when something of note happens, and it takes a very long while to discard that article of clothing, if ever.  I attribute more meaning to these “occasions” than do most people, and realistically, more than is warranted.  I remember wearing a new dress to our first appointment with the neurologist.  I would be going to work immediately after the appointment, and had to dress professionally anyway.  I liked my new dress and felt pretty good in it, and I also thought that maybe feeling good about my appearance would somehow vaguely affect its outcome.  Not in the “Hey Wendy, nice dress–no way your kid has a disease with that superbly-cut gray dress on.  Nice scarf too!”  More like in the, “If you feel good, you carry yourself more positively and good things will come back to you with this positive light.”

I fuzzily remember thinking then that if the news came back in a bad way, that dress would be forever be that dress.  Thus have the emotional fibers been woven into what has become the diagnosis dress.  I’ve worn it since, and it evokes the morning of my son’s first appointment when I see it.  I know I will keep it always, long after it’s gone out of style.  Tomorrow is our second appointment–on January 21, April 9 felt like a lifetime away.  When asked, I kept saying to friends and family, “Oh, his next appointment isn’t for another couple months, so it’s not emergent, and the neurologists don’t seem that concerned.  We’ll see.  We’ll figure it out.”  Tomorrow is April 9.  What should I wear?  Will I always recall what I wear tomorrow with some degree of sentimental affection, disdain or sadness, or what?  Will it always be THAT shirt or pair of pants?  What uniform, what costume does a mom wear to learn about her son’s future?

It sounds ridiculous because it is.  And also, it isn’t.

5-7-5

A few years back, a friend invited me into his Haiku circle.  During the last 10-12 years or so, he has built a group of writers who are invited weekly to submit a haiku, and through it, I’ve “met” people I’ll probably never meet.  You learn about people though as you read their seventeen syllables–their joys, trials, disappointments, wry observations, dreams.  No one but Paul, the moderator, seems to craft a haiku each and every week, but I always enjoy my Friday invitations (sometimes more than the resultant haiku themselves in fact) and reading Paul’s Haiku Unity Clearinghouse (PHUC –wink-wink-nudge-nudge get it??) the following week.

I’m contemplating this week’s seventeen, but can’t winnow down to one topic.  I have a friend who became a widow one year ago this week; she’s in her 30s and has triplets.  I can’t breathe sometimes when I wonder how she has made it.  She has strength of character and a heart that beats for four; she’s smart and beautiful and hard-working, and I admire her so.  I thought I might write seventeen syllables about her, but how can I possibly capture her tale in so few words?  I wanted to leave her some type of message on THE BIG DAY, but elected not to.  I know she had a billion messages on THAT DAY, but I bet she got fewer on the day after.  Maybe I’ll write about her, but 5-7-5 seems insufficient.

My kid has another neurology appointment this week, and I’m terrified.  This begins the differential diagnosis protocol, and a part of me wishes desperately to continue blissfully unaware. PS–it’s not blissful and I’m pretty aware.  Just sayin’. . .  Knowing what to expect though means there’s something I will need to expect, and my mother’s heart still expects wants my kid to grow out of it.  I have created this forum to bitch about MD though, and clearly I could not restrain myself to seventeen syllables.  I’m already at 323 words.  325.

It’s Easter tomorrow, and though we are not religious, I do enjoy the fellowship the spirit of rebirth and the Easter Bunny bring.  My husband and I plan to burst the big kid’s bubble and tell him that the EB is not real next week.  The notion of a mysterious critter sneaking in under cover of darkness leaving treats for good little girls and boys is magical and sweet.  I feel somewhat murderous in intentionally shattering that notion.  Will I feel worse for him when my kid’s friends torture him mercilessly when they find out he still believes though?  That is the conundrum.  Conundrum has three syllables and would fit beautifully in a haiku.  So maybe this is my theme.

The snow has finally (probably) melted for good, so I began running again this week,  The best way I know to describe my relationship with running came from my friend Sally, the wife of my haiku moderator as it happens, and a dear friend.  I know for a fact I couldn’t dream of capturing my gratitude at meeting her and gaining a life-long friend early in my 40s in 5-7-5 formatting, so that’s off the table today too.  The first time I began running (the first time since high school that is), she told me, “I hate running, but I love having run.”  Word.  Here are seventeen syllables that capture my love-hate relationship:

Hate, hate, hate, hate, hate

Hate, hate, hate, hate, hate, hate, hate

Hate.  Love.  I did it.

 #nailedit

Baby Steps

I can walk.  I can even run, but I really, really hate running, so I prefer to walk even though I do run.  Don’t overanalyze me here.  There is NOTHING like the feeling of accomplishment experienced after having run any distance, but the whole time I’m running, I’m pissed. These people–frauds!–who speak of “runner’s high” and endorphins rush and all that?  Lying liars, the whole lot of  ’em.  OK, what I’d really prefer is to eat as much as I like whenever I wanted while maintaining a super athletic build with slim, ripped muscular legs and a rock-solid core flanked by arms so toned they bring a tear to your eye.  As luck would have it, I didn’t win the genetic lottery either, so I am forced to be extremely mindful of nutrition and activity in order to weigh fifty pounds less than the number from which my DNA shouts, “Over here, you dope!”  Oh, to be genetically predisposed to be thin.  *Sigh*

Today I put one foot in front of the other and took baby steps into acceptance.  I signed our family up for the MDA Muscle Walk on April 26.  I can walk, and so can my sons and so can my husband.  I can walk to help others whose spin on the genetic wheel of fortune landed them on neuromuscular disease.  Lose a turn.  Do not pass go.  Do not collect $200.  So while we are new to the “MDA Family” (man do I freaking hate the term “family” when used precisely in this context, and semi-related:  I hold “journey” in equal disdain when describing someone’s sad experience of health-related issues, and I have already begged my husband not to use the phrase “lost her courageous battle with ____” (insert hideous disease here) in my obituary should I endure said hideous disease.  What just happened here?  Did I get a bit off topic?  LOOK!  Something shiny!!).  Ahem.  So we are new to the “MDA Family,” and will be attending our first family function and walking, all four of us, walking for friends, loved ones and strangers who can’t.  Team Baby Steps.

The Importance of Being Earnest

I sat on an IEP Team meeting today for a young man whose cognitive disability is so severe he lives in a residential care center.  An IEP is an Individualized Education Plan; it’s the plan that details what special education and related services are required for students with disabilities.  A ‘residential care center’ is what was once known as an institution.  ‘Cognitive disability’ is what most people think of when they hear the words mentally retarded.  As a speech-language pathologist from the district in which this child resides, I was asked to be on the team to represent communication.  The 16-year-old boy we talked about today cannot do anything for himself; he cannot feed or toilet himself, he cannot hold a book or color, he cannot complete a project which requires the use of both his hands at once.  When I say ‘project,’ I mean he cannot hold an object midline or open a container using both hands together, so severe are his disabilities.  He would starve to death if no one fed him.  He is a 16-year old who functions like an infant.

The infant (she sounded very young anyway) speech pathologist at the residential facility believes she can ‘train him to develop communicative intent.’  Those were her words today.  We operate under two different sets of rules, public school speech pathologists and private sector SLPs.  There may be something to admire about the hope she has under her system of rules, but I cannot abide the cruelty she inflicted upon this child’s mother today under the guise of hope.  Never in my career have I ever, in a meeting with a parent present no less, said to another professional, “you and I have a fundamental philosophical difference of professional opinion.”  Til today.  The baby speech pathologist has been experimenting with a voice-output communication device for this child.  He likes this one musical toy and will hit it to activate it.  Occasionally.  So will a baby.  Occasionally.  Baby speech path seems to think that this boy is going to make a meaningful choice from a field of four pictures (pictures?? not even concrete objects, which by the way he doesn’t even comprehend–would you ask a 4-month old baby to do this?) to express what he wants because he bats at a cause-and-effect toy.  Guess what the mother’s take-away was?  This magical speech generating device is going to make him talk.  “When can he start using that?” his mother asked.  I died inside.

Mrs. G, I ache for you.  My eyes mist as I write this evening.  I am so sorry.  I cannot begin to imagine a world where my child’s greatest accomplishment is walking a distance of about 30 feet once.  Yeah, once.  But I cannot offer this false hope.  I will not.  It is unethical to offer services when there is no reasonable expectation of progress.  This child has not had speech-language services for several years already because his abilities are at a preverbal stage.  Many years and many SLPs before me, this mom’s heart was broken because she had to hear that horrible message, and I’m so very sorry that is the case for your son.  Three weeks ago, I looked our very young neurologist in the eyes and said, “so you’re saying my son has muscular dystrophy,” and he said, “yes.”  Thank you.  I hate it, but I thank you.