Sunday, October 30, 2016

Follow Your Own Recipe

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Noah's specialized diet results in time consuming endeavors in the kitchen.  Nearly eight years later Noah still cannot eat anything else other than purees, puddings, cheesecakes and meltables.  And because of his high tone and athetoid movements Noah is on the move all day - burning lots of calories.  He's on his own individualized exercise program!

Noah's treating providers have always encouraged high calorie foods, healthy fats, no preservatives, no artificial dyes, and organic to give his brain optimal opportunity to keep his mind and body as healthy as possible.  So my chef skills are sometimes on hyper-drive and I'm always looking for yummy things that Noah would enjoy.

Now that we're into fall, all those warm and cozy meals are on my field of vision.  One day I woke up wanting a culinary challenge - (really because I don't have enough challenges to my day right?) In hindsight I was likely looking for a diversion to the outside stress that comes along with special needs parenting.

What's something that I could master?  Julia Child's Beef Bourguignon came to mind.  So I googled it.  I spent way too much time peeling pearled onions and braising beef... but I did it anyway.   It was okay, I mean I followed the recipe - it turned out - but it wasn't like the choir of angels I thought I'd hear singing when I took my first bite.  Noah ate it, he liked it just fine, but I could tell by his expression that it was just mediocre in his world.  Luke did his best to fish out the mushrooms and anything that could be remotely identifiable as a vegetable.  Chris - easy to please had seconds because he's just that kind of cool guy. 

Yet, even though I did everything right in the recipe I expected so much more, and I felt in some way incredibly let down by Ms. Julia Child. 

I decided to give it a second go.  But this time I decided to follow my own recipe.  I took elements from Julia's recipe.  I still braised my beef, I ditched those time consuming pearled onions, and instead I added celery, homegrown gold beets from our garden, garlic, less carrots, garlic, only 2 sliced mushrooms, I kept the bacon but changed Julia's ratio of organic red wine to beef broth, increased Julia's recommendation of flour and threw in a bay leaf and said you're all mine! 

And then angels sang at the dinner table. 

Now you're all probably out there thinking why on earth have I followed along about Noah's mommy discussing her attempts at Julia Child's Beef Bourguignon?  But really I do have a point here, I promise. 

Sometimes we're always itching to follow in someone else's "personal best" that we fail to consider that we each have our own personal best within us.  Why isn't it okay for us to follow our own recipes in life?  And have them be the best for us?  The same lessons carry over onto much of the special needs parenting journey.

Why must we measure our children against another child's personal best?  Against the recipe of milestone timelines that therapists dish out?  Compete for the same success one family found doing a particular therapy or treatment?  Allow others to tell us how our recipe should look like? I swear if I have another therapist tell how they think I should be putting my typical child in public school to offer him the experiences of a "normal" childhood implying because he has a severely disabled older brother that we've somehow short-changed his life - or insinuate that because I don't take Noah to a all day camp where they push him for 8 hours a day, cause him to cry and be in pain all in the name of "therapy" I'm libel to explode in verbal direction that I'm sure they won't appreciate.   

Our recipe can look like our own.  And that's so awesome.  In fact it's more than awesome, because we're being authentically true to ourselves and to our own children's needs.  Our form of preferred therapy for Noah can look different from traditional forms or methods, or philosophies about parenting or teaching both a typical child and a profoundly disabled child alongside each other can look different than sending our children off to public school. My recipe and your recipe can look similar or different, but the fact that they aren't exact is a wonderful and beautiful thing.  


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, October 10, 2016

A Fall From Nowhere

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A little more than forty-eight hours ago, Chris and I went downstairs to try to troubleshoot a new storage plan for Noah's adaptive equipment.  Cumbersome and bulky there is no really easy way to just tuck in a corner until it is needed in Noah's day.  After less than a five minute conversation about it, we turned around to see this little grey spot on our blond tiled floor.  As we approached it was pretty evident what it was - a baby mouse only days old, with fur but it's eyes still closed.  I thought for sure it was deceased - it wasn't moving, still and quiet it just laid there.  Until I got closer and realized it was breathing. 

My heart sank.  What on earth was I going to do with an infant abandoned mouse?  And I knew where there is one there is usually more. A thousand things ran through my mind.  Mice can carry viruses  - and what do I do with a breathing baby mouse?  In the moment I asked Chris to get a Tupperware dish and poke holes in it.  Deep down knew I only had one real option for someone like me - I had to try to save it. 

There was absolutely no trace of any other mice in the basement.  Because Noah is so medically fragile our home is pretty spotless - or at least I break my back trying to make it that way for him.  There were no droppings - no signs of anything.  It was as if he fell from the middle of nowhere - and so he did.  Upon dragging out a ladder and evaluating the top of the wall, we found a small hole in a gas line that led to the fireplace, a likely source of entry and another deceased litter mate on the ledge.  This little mouse had fallen eight feet to the hard tiled ground and survived against all odds.  A miracle in itself - I convinced myself that was a sign that this mouse had a bigger destiny - and that without a doubt it was meant to survive.

A rodent - but one with a purpose. 

Is there such a thing?  My mind said there was.

A tremendous detour in my day I rushed to the pet store, quickly threw down $25 that we needed for weekly groceries, for a critter keeper, puppy formula and paint brushes for feeding, I came home to save the day and accepted the adoption of the orphaned mouse challenge.  I figured the first twenty-four hours were critical.  If I could make it past that, then he'd be home free.  My goal:  To nurse it to independence and set it free.   I could do this.  After all I'm an expert caregiver.  Internet research said feed it every two hours, use a paint brush dipped in formula, rub its belly with a q-tip for digestion... not too bad.  And I can't deny it - I added extra tender loving strokes so it didn't feel lonely and knew that it was in some way cared about.

Although I was slightly worried as I thought maybe it might have a bloody nose, I decided it had just scratched itself accidentally and was minor.  It was very active, healthy, thriving and strong.  A fighter.  Feeds were going really well, and I faithfully woke up in the middle of the night - even in between Noah's needs in the night, which further contributed to my level of already existing sleep deprivation - just for the mouse.   Last night the mouse seemed a little bit more lethargic - but I assumed it was tired and sleeping, still active but slightly more time to get it excited.  The morning still active I gave it breakfast and then without warning it started to gasp, and have labored breathing.  Immediately I was fearful that I had done something wrong - had it aspirated while feeding? And then it just passed away in my hands - just like that.  It was over.

And then this incredibly crushing feeling of failure.  And an immediate question of purpose.  If the mouse had survived falling eight feet, only to pass away two days later, then why did God allow him to survive the fall in the first place?  I told it's little lifeless body how sorry I was.  I ached for it to come back to life. A silly mouse - that I would never want for a pet - yet I was mourning the loss or trying to foster and care for this tiny little life - less than an inch big.  his head no bigger than a fingernail.  A small helpless, blind life.  Gone.

So what is the lesson in all this?  Besides outing me as an overly sensitive and compassionate, if the end result was that it didn't make it - then why did it survive that fall anyway? 

I'm still guarding Luke and Noah's childhood.  As they both inherited their mother's sensitive nature and the overwhelming feelings of the disclosure of death is too much for either of them to process at this age for who they are.  And if I can spare their childhood just a pinch longer from true understanding of it all, then I've bought them a little more time of not to have to worry about thinking about mortality.  That lesson comes all too fast for all of us anyway.  The mouse went to be with it's family is how I explained why it suddenly disappeared from the top of the refrigerator.  A completely acceptable thing for Luke.  He only asked once and it was fine - out of sight out of mind.   Noah looked a few times for it, and then that was fine too.  And as fast as the mouse came into the picture, he left. 

Because of the circumstances I didn't have time for a proper burial - yes I did actually think about it.  I think I felt sorry for myself for most of the day in fact - that looming sense of failure - and because I really put in the effort and thought I'd be able to save it and release it.  Although in reality I worried about that too wondering how it would find shelter in time before it snowed... and perhaps I wouldn't have been able to let go of something so easily that I essentially raised... till let's say spring of next year... who am I really kidding?

I kept peeking in on it kind of hoping that death was not a final diagnosis, wishing for a resurrection - a chance for me to try again - a chance for me to do better.   Issues that I know still haunt me from Noah's birth - a redo - if only I can go back in time I tell myself - it would all be so different.  I could have saved Noah from this fate and birthed at a different hospital, insisted he not go over his due date, insist on an instant c-section not just a 13 hour, natural delivery delay, without a notarized birth plan for hospital staff to hide behind as an excuse for not meeting the standard of care - and the mouse perhaps I could have too also influenced the final outcome. 

But that's the recipe to how we carry guilt.  We carry guilt because we convince ourselves we are somehow to blame for an adverse outcome.  Even when we had nothing at all to do with the end result and it was ultimately out of our hands.

Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, October 3, 2016

Speechless: More Than a One Hit Wonder

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Many of those in the special needs community (although were already rooting for Speechless) were waiting to see if the show would have ongoing and amazing content after the much anticipated first episode aired.  I must say I was as pleased with the second episode as I was the first.  Maybe even more so, as there are a variety of subjects, situations and discussions that are centered around a special needs family dynamic. 

In episode two, the viewer got a preview into what I like to call the "special needs mom push back," caregiver topics such as toileting assistance, financial strain homestead issues, and the independent thinking and personality that many assume who are non-verbal don't have, and the hardest one - trying to let go - "when he is your entire world."

The classic mom push back was hilarious to watch.  While most of us are not privileged enough to have the opportunity to lecture the school principal on how the "push back" actually works, the scene provide a sense of authenticity to the real show down that really exists and occurs quite frequently when you are advocating for your child with a disability.  The dad, whom viewers may think is along for the ride, with his head flipping backwards and arms crossed, simply signals that he knows that his wife's inner bitch has been unleashed and he just stands back to watch the show  - a show he fully supports. 

Two parts although still light-hearted in their presentation still had a way of pulling on those familiar heartstrings.  When JJ's new aide, Kenneth, is about to embark on a solo journey for the day with him, and his mother is having a hard time trusting and letting go.  (And not without undue concern as the aide temporarily drives off without him) - and knowing that you at some point have to trust another stranger and human being with the most precious and protected person - that sweet child that has indeed become your entire world.  Certainly as Noah gets older, my mind has not gone there a time or two.  For the most part I don't go there often because those feelings of ever being able to trust someone else to care for Noah with the same safety, tenderness and care that I do - feels unlikely and impossible at the moment.  But, that doesn't mean that I don't remain open for the right person to walk into his life one day who might come close to fitting my long list of caregiver requirements.

An equally touching yet complicated moment was when JJ's mother, Maya, walked in on a conversation between JJ and his aide in the bathroom.  A moment that gave her some hope - not total trust - but a glimmer of hope that perhaps she indeed had made a good decision for her son.  A patient and understanding aide, Kenneth, does a superior job of reassuring JJ that he can assist with his toileting needs and would be there to help him. Fair to say that pretty much is on every special needs parent's wishlist - someone that will be there for their child who genuinely wants to assist them and give them every possible feeling of dignity that they can with what is required in 24/7 daily living needs, personal hygiene and care.

Perhaps one of the most comical parts were when the DiMeo family approached their neighbors with a realistic picture of how they'd be voted least likely to keep up with their property.   While that part of the episode may have come across snooty, careless, or unconcerned, to the average viewer - to a special needs family it's representative of the financial constraints that really limit a family to have the resources to keep up with home repairs, remodels, and time constraints like household tasks like mowing the lawn, gardening, and snow shoveling.  And in the end the perception is from neighbors is that we are stupid, lazy, or in the words of JJ's little sister, Dylan, "idiots."

Speechless hit another second episode home run - one in which has scored the show an entire season pick-up by the network.  And special needs families everywhere are celebrating.   What disability topic would you most like Speechless to cover this season?


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.