"Normalcy" - Who Needs It? Sometimes Me.

Lucy got her first Synagis shot of the season today.  For those of you who don't know, this is a vaccine against RSV.  It doesn't fully protect against it, but it should help the severity and duration of the illness if she contracts it.  It's atrociously expensive, so chances are unless your child was a preemie, you've never heard of it.

Lucy's a big girl now, and bigger Lucy = bigger dose of Synagis.  Both legs were attacked, and boy - was she pissed.  I don't blame her; someone came into our home, her sanctuary, and jabbed needles into her chunky little thighs.  I hate seeing that shocked, betrayed look on her face, and the tears that fall, accompanied by the softest - but hardest - crying.  Lucy deals fairly well with Synagis; she doesn't become bipap-dependent or require tons more suctioning.  Mostly.  She does, however, get quite a bit clingier than her usual "not in the mood to cuddle" self.

She fell asleep on the couch, and I got all ready to put the bipap on her when I realized that the metal piece that plugs into the machine was bent to the point of not fitting.  Must have happened during our recent hospital trip.  No worries; it was later in the day, and I figured I would let her sleep for 15 minutes and wake her up.  Wrong.  Lucy woke up on her own, crying hard.  I picked her up to soothe her and walked her around with her head on my shoulder (her new favorite position).  After 10 minutes - about all I can manage carrying a 24 lb baby - I noticed she had fallen back asleep.  I didn't take her back upstairs to put her on her vent.  I didn't lay her back down and put her pulse ox on.  I didn't try to wake her up.  I sat down and laid back with her, stomach to stomach.  No machines.

I know, I know - something can happen in an instant with a SMA kid, and you might not even be aware it's happening.  Even though she's breathing, her gasses may not be exchanging properly.  Her sats may be low, and I wouldn't know.  What I DID know is that she was a child who wasn't feeling the best and wanted her mama.  Twice I tried to lay her down and at least put the pulse ox on her, and she started wailing (wailing being a relative term; it was pretty quite.)  I caved.  Lucy slept on me for almost two hours, first on her tummy, then cradled in my arms.  And it felt amazing.  Something that most moms accept as a given, and may even feel hampered by at times is something that I don't get to experience, ever. 

So today I gave in - to Lucy and myself.  We were a "normal" baby after shots and a "normal" mama comforting her.  I know she needs her bipap, she needs her pulse ox, she needs this Synagis - but she needed me too, and (we) needed a break from SMA.  And I was happy to give it to her.

Clinic Day

So yesterday was our first muscle clinic in Madison for Lucy.  They only come once a year (thank goodness!), and since it's been a little over a year since her diagnosis, she was due.  Anyone who has been to clinics in Madison knows it is a LONG day, with a blur of faces and information and lots and LOTS of questions.  They have questions - "they" being occupational therapy, physical therapy, rehab, palliative care, dieticians, social work, respiration therapists, and of course, the head honcho - Dr. Schroth.  Some women open their wallets to rows and rows of credit cards; I now have the contact information cards of everyone in the American Families Children's Hospital's directory.

We have questions too, if we can manage to keep our heads straight and spit them out to the right people: are we bracing effectively?  What about stander time?  Is she gaining too much weight?  How aggressive should oral therapy be?  I began to think that a notebook would have been a good idea when they brought in the list of people we were going to see.  Yep, a list, so we could check them off as they came in to evaluate Lucy (and us). 

Our "appointment" was at 8:15.  AM.  We - including Lucy - are not morning people, so she ended up having to take a little snooze, and of course she planned that when the occupational therapist was there; the lady who really would have assessed her ability.  I came to find that it didn't really matter, because just as any other clinic day in Madison, people are coming and going through your room all day.  Lots of times the same people return to tell you one last thing, or ask you another question, or bring you more information or tools.

It was a very productive visit though - and since we didn't leave until 3pm or so, it should have been!  Lucy had a blood draw for labs from the world-famous Noni, or as I like to call her - the Blood Whisperer.  You know the saying, "you can't get blood from a stone?"  Noni could.  And fast.  It still wasn't fun, but it was over quickly and soon forgotten.  I also changed Lucy's mic-key button for the first time myself, which was far less painful (for me) than I had imagined, and a mere annoyance for Lucy.  Her AFOs were modified to be more effective, she had an xray for her hips and general alignment so they can now chart her spine curvature and her hips for dislocation, and everyone took the time to tell her how cute she was - which I think was her favorite part.  Lucy absolutely ADORES being fawned over; when she sees a smile on someone else or hears the words "cute" or "pretty," the person lavishing attention on her is sure to be rewarded with her shining grin.

Lucy is doing well.  Her movement is still pretty fair, her joints are limber enough, she's perfect as far as weight for a SMA child... and most of all, she's happy.  So, in your face pulmonologist who blandly told us that Lucy would have no quality of life and we would only be selfishly prolonging the inevitable in seeking anything other than end-of-life care for our daughter.  I don't know what the future holds in store for Lucy, but so far she's getting all gold stars. 

Musings

I wonder what it feels like to try and try and not be able to move what you're trying so hard to move.  I wonder what it's like to not be able to shift yourself when you get sore from laying in a certain position.  I wonder what it's like to spend most of your life laying down.

Does she wonder why she can't put food in her mouth when she sees us eating?  She watches intently when we feed her; I wonder what it feels like to have food enter your stomach directly.  I know what the bipap and cough assist and suction feel like - but what does it feel like to sleep a whole night with a mask strapped to your head?

What's going through her head when I can see that she desperately wants to talk but instead we have to suction a throatful of secretions out of her?  I know I wouldn't want to open my mouth after that.

I know she feels loved.  I see her smile everyday, hear her quiet squeals of laughter when daddy spins her around, watch her wiggle in anticipation of her favorite parts in songs and stories.  I know she has the attitude of a toddler; she can go from calm to tantrum in less than a second if she doesn't IMMEDIATELY get her way (we're working on that!).

But what I don't know, is - what does SMA feel like?  As it is, I'll never be able to relate completely to her, never be able to say "When I was your age..." because nothing in my life could even begin to compare to what she goes through every day.  Even on her best days. 

Every once in awhile I think back to my childhood, my adolescence - school, summers, dates, dances and everything in between.  Little fragments and snippets of memories, compiled to comprise the essence of me.  Feelings, emotions, experiences.  I'm selfish; I don't just want Lucy to be able to breathe without a machine, or eat by mouth, or even walk (though I would take any of these things and be eternally grateful.)  I want her to have sleepovers with friends in a tent in the yard, go to football games to cheer for her school, be whisked off by a boy to the dance.  I want her to go on late night walks with her best friend, go to the movies with her boyfriend, go to the mall with her mom and shop for hours.  At Christmastime (aka the height of flu season.)  I know that theoretically any of these things are possible, even with SMA.  Remotely possible, but unlikely.

No one can take away my dreams for my child but me, and I refuse to do that to myself, or her.  I refuse to hope for anything less than the best for her, the best being what so many people are granted everyday without a miracle.  I will never stop hoping, dreaming and praying that someday I can say to Lucy "When I was your age..." and be able to follow that up with a statement that is even slightly comparable to what she is going through in her life.

You're not going to win, SMA.  You can kiss my ass.

The War on SMA

This month on facebook (of which I am an avid user; being sequestered at home has made this necessary to retain a modicum of sanity) there is a little activity called "30 Days of Thanks."  Really, we should count our blessings every day all year, but November's big holiday seems to bring out the gratitude that can otherwise fall to the wayside.

There are many things I am thankful for.  I think if I listed them all here, I would go from a handful of followers to zero faster than a SMA mom sprays hand sanitizer at a newcomer in their home.  So, I'll go with something that is new for me to be thankful for this November: my SMA family.

Last November, we were only a month or so post-diagnosis, so we were still stumbling through what it meant.  I was directed to an online community by a very devoted SMA caregiver/grandmother.  This online resource, SMAspace, has been a Godsend to our family.  Through SMAspace, we were introduced to other SMA families living all over the world.  Suddenly we did not feel so incredibly isolated, so freakishly alone.  How is it that I'd never heard of SMA before - there are hundreds of families on here (actually, well over one thousand)!  Having people who are extraordinarily knowledgeable - moreso than most doctors on the subject of SMA - and compassionate at our fingertips has made a stunning difference in how we perceive the disease.

Our kids can go tobogganing and skiing; they can swim and run marathons and write books and make straight A's in school.  They are shining lights, and the one thing every family has in common is that they would do anything for their child.  Leave no stone unturned, no mountain unmoved in the pursuit of what these kids deserve out of life, whether they feel that's making friends in preschool or a cure for this disease.

Every family has different views on how to attain what can sometimes seem unattainable, but we all have the same goal.  Whether we come out and say it or not, every family wants a cure or viable treatment for their child, in their lifetime.  Some families may not feel this is realistic; this doesn't mean they don't dare to hope.  Some families refuse to believe that this isn't a possibility, and they are not wrong.  ANYTHING is possible.  The healthiest person in the world could have a plane land on their house tomorrow and kill them, and the weakest child could have a lifesaving therapy performed on them next year and outlive their parents.  No matter what studies say, parents say, outsiders say, organizations say is going to happen tomorrow, a month from now, a year from now - the thing is, we will never be sure of what the future holds for us.  And our human nature sometimes cannot handle that.  We want desperately to be sure of the future, and what it holds for us and the ones we love.

Some channel that want into fundraising, because at this point, there's really not a whole lot else us as parents and supporters can do to move towards what we want for our children.  Some channel it into raising awareness, getting the word out there, letting the world know that this IS preventable; it IS realistic to hope (and all the while, that hope is becoming more and more of a reality.)  Some (all, really) put everything they have into their children, fulfilling their needs and wants as best they can, adapting everything about life to suit their needs.  A quote posted recently sums it all up: "I thought I would have to teach my daughter about the world; turns out I need to teach the world about my daughter.  They see a girl who cannot talk, I see a miracle who doesn't need words."

Whatever your stance, however you approach this disease, whichever road you take in the pursuit of your dreams for your child, please know that we ALL want to end up at the same destination: the end of SMA.  The wounds left behind will always be felt, like battle scars, but the war will be over - and we WILL be victorious if we fight it together, remembering the slogan "no man left behind."  We must fight for the weakest of the weak, EVERY child with SMA, because every child is precious in God's eyes.  It's only a victory if it can be savored by all.

Love to everyone in my SMA family, I am forever thankful for each and every one of you.