How am I thankful? Let me count the ways

The thing about Thanksgiving is that, aside from the insane amount of home cooked food that is consumed, it asks people to stop for a few hours and take stock of all of the things that they have to be thankful for.  I'll be honest, I am a glass half empty kind of gal and so it's easier for me to bring to mind things that have not worked out so well, or worse.  And so I do my best to stop with everyone else and take in all I have to be thankful for:

7.          I am thankful to watch my parents love on their grandchildren. I have seen them smile more in the last 4 years than I can count and it fills my heart.

6.          As ridiculous as it sounds, and I know many of you will laugh at this, I am so thankful for our furry family members. My little girl loves them something fierce and as for me, Lennon is this furry little bundle of love that soothes my soul.  And Tucker, oh Tucker, even your ridiculously anxious and over the top reactions to absolutely everything make our home a little more complete.

5.          I am thankful for our friends.  I had always feared that after losing Jack, there would be casualties; people that just couldn't fit into our life as it is now, and there have been-and that had come with its own sort of heartbreak.  The idea of losing anyone after losing our son seems like salt on an open wound. And so, I thank God with every fiber of my being for the people in live that take us where we are at any given moment and love us anyway, never asking for more than we can give at the time.

4.          My siblings. I am thankful for these beings that have seen me at my worst, gotten me into and out of trouble, hugged and squeezed me when I've needed it most, and have made me laugh until the tears poured down my face and I've been gasping for air. Half of us have moved into the area and seeing them regularly breathes some youth back into my lungs on a regular basis.

3.          I'm thankful for Jack's Herd and what it is allowing me to do.  I am thankful that the people I love have helped me to build something for me to channel this great love I have for my son into. I am thankful that out of tragedy, something meaningful can grow.  We will nurture Jack's Herd with the love and careful attention we would have done with Jack himself.

2.          Sean. For this sweet man I am more thankful for than I can possibly put into words.   I have been able to make it through each day of the last 23 months solely because the love and patience he shows me has convinced me that I can.  If fate is real, and this is the path that I was destined to walk, the universe did me the ultimate act of kindness by sending Sean my way.

1.          And lastly, Kennedy. This one needs no words or explanation of my thankfulness but I will try and do my best.  My heart beats for this girl.  I look at her and listen to her talk, time slows and I think, "How will I ever repay this tiny, beautiful, little soul for all she gives me?" Each time she smiles at me or touches my face I am reminded how I have survived-her light wills me forward, allowing me to put the pieces of my life back together as best they can fit now. I am thankful for Kennedy in a way that takes my breath away.

And so, as you pile your plate full of whatever goodness is served up today, take a quick minute. Think of something or someone you are thankful for and tell them; show them. I, myself, do not stop often enough, take a step back and stop breathing in the chaos long enough to take in-really marinate in- all of the things I have to be thankful for.  The holidays make me sad now, there is no getting around that.  I cannot help but notice the empty chair that will always be there.  But I will tell you this though, my friends, gratitude goes a long way in healing a broken heart.

Putting it in Perspective

You know it's a funny thing: how drastically your perspective can change about something.  Sometimes it's simply time that changes it, but I think more than that it's the things we see around us and our life experiences that really alter perceptions.  Like my perspective of things as a parent versus the judgey opinions of a single, young twenty-something is comical.  iPad at the table in a restaurant? Sure, if it means Sean and I can shovel a semi-warm meal down on borrowed time!  Cheese for dinner? Vitamin-D and calcium are in those, aren't they? And you're eating something without me begging too hard so.....Perspective, people, it's all about perspective.

About 2 years ago, Sean and I were sitting by the phone waiting for the results of the genetic testing on Jack, praying that the first round was wrong, that we were worrying for nothing.  It felt like the world was falling apart; how could we handle a special needs child? Finding out our sweet boy did, without a doubt, have Down syndrome was devastating to me at the time.  I can vividly remember thinking, "Everything we had dreamed of and hoped for him will never happen," and believing that with every fiber of my being.  My perspective was shaded and shaped by things I knew from the past: special schools, institutions, limited life skills programs, and simple jobs to help keep busy; this is what I thought was in store for my baby boy: a limited life expectancy and a world that did not hold much promise or opportunity for him.  It's no wonder I cried my eyes dry.  As I read everything I could, scoured websites, and spoke with advocacy agencies and parents of children and adults with Down syndrome my perceptions and perspectives changed drastically and with such an intensity that I wanted to time travel and slap the me of two months prior silly.  Was it going to be challenging? HELL. YES. Tears? Most likely.  But as the mother of a beautifully bold, precocious, and lively then two-and a-half year old our life is full to the brim of challenges and mommy-tears already. 

When Jack died, the fire in my heart went out.  I felt ashamed that there had been a time where I was worried about his abilities and disabilities.  We didn't have him at all now and I had had nerve to cry over perceived imperfections?  I hated myself and could barely look in the mirror.  I thought, "Go ahead, cry, because this is really what you should have worried about all along, his health, not beautiful almond-shaped eyes, and how fast or slow he'd walk or talk, you stupid girl."  We would have taken him at his worst and loved him fiercely just to have him with us at all, again changing my perspective.

As two yearly has ticked by, sometimes painfully slowly and others flying by in a blur, this gradual shift in perspective has surprised me the most, probably making others think 'yea right, easy to say that now in light of everything that happened'.  But as I continued reading and following the lives of other families and parents touched by Down syndrome, still feeling connected to them despite the absence of my son, I couldn't help but feel something that I couldn't put into words until last night, when it hit me like a ton of bricks reading something another mother said about her own little boy.  Jealous.  I feel jealous.  And no, it's not a jealousy in that they have their children and I don't, that unfortunately is inherent in our situation and is not something I can rectify-that will ease up only with time and acceptance, I'm afraid.  No, it's not that.  It's a jealously in the utter fullness of their lives and the people in their lives, forever changed by the their amazing babies, children, and grown adults with Down syndrome.  I believe you can only be made better by being in the presence of individuals that work so hard for every single thing they achieve.  These parents, siblings, family members and friends, changed for the better in a nothing-short-of-magnificent way by their experiences of watching the challenges that are overcome and the achievements that are reached by the amazing, determined individuals they have the honor of loving.  I root for them, cheer them on, sending all the love and positive vibes I have within me.  But I would lie if I said it was not without a pang of jealousy and longing in my heart.  And this, all because of perspective. 

So yes, my perspectives have shifted. They have, in many cases, absolutely exploded and been reborn; as a parent, as a parent of a special needs child, as a grieving parent.  I don't know what the future holds for me, but I'm sure it will involve some sort of change.  After all, if things are not changing, we aren't really living. 

Perspective, my friends, it is all about perspective. 

Let Me Check Her Calendar...

You know everyone thinks babies are hard work.  While they are no walk in the park, it’s really once they are old enough to start keeping a social calendar of their own is when the action really starts.  I don't know about you people,  but my days are pretty jam-packed and so, to now have to work into them things like hockey practice and dancing school and birthday parties, things have reached an all time high on the chaos scale.  When I see this kiddo smile though, as she asks, “what’s after this nap?” and we run through it all, I suck it up and take it like a mom because it's so worth it. 

Growing up we always had handmade costumes.  My mother would stay up into the wee hours of the morning finishing our costumes the day before we would proudly walk to school hallways for the Halloween parade.  I remember, not so secretly complaining that I wanted one from the store, failing to realize that far more effort and money went into mine and that she would have saved herself some time and exhaustion.  Now, I inherited zero sewing skills and far less patience and so while I never make Kennedy’s costume I scour the web for people that can and delegate that responsibility.  This year I stepped way out of my comfort zone and gave my kid what I always asked for: A mass produced, store bought costume.  A Shimmer & Shine costume to boot-which I learned was a pretty hot-ticket buy this Halloween (but man oh man do I loathe that show).  If only it was as cheap as it looks.  I cringed as I put it on her and it literally crunched but God, was she ever happy and so as I sent her off to her preschool Halloween party, so was I.

We were pretty jazzed up for hokey practice this past week for a few reasons.  One, we did an extra practice skating session last weekend and she was excited to show her coaches how much better she got, using two feet to skate and everything!  Second, we came across a hand-me-down jersey we got from Sean’s  cousin.  She was so excited to wear a really hockey jersey; I was just excited that we were able to cover up the “hooters” part of the autograph that read: Hugs & Hooters –Lee.  The kid looked legit and Sean and I had a good laugh watching her skate away from us! 

After dance this weekend we quickly ran home for a costume change to give Shimmer another go-around for the costumed bowling birthday party she had been invited to, swapping  the wig out for spray painted hair   This was her first invite to a school friend’s party and so I was stressed because, well, I’m me.  Also, when we were getting changed Sean noticed her pet fish, Nemo, died.  We had the thing for almost 2 years and so we’d really become invested in keeping him swimming.  We debated back and forth about telling her versus just buying a lookalike to slip in the tank.  Honestly, I didn’t think she’d be too broken up about it and so we told her.  Boy was I wrong.  Total mom-fail.  I miscalculated, forgetting that death is not an abstract concept to my little one.  But as she cried and cried what really did us in was when she stopped sobbing and just sniffles and said, “well he can be Jack’s fish now, I bet that will make Jackie-boy really happy.”. She and I both got ourselves together in time for the party and she excitedly said hello to the kids from her class while I introduced me and Sean to their parents.  Each time I was met with some version of “oh we hear about Kennedy all the time!” A thousand scenarios ran through my head about what they must hear and that was only intensified when during the pizza break Kennedy brought up the death of the fish to the kids she was sitting with. Really though I was horrified about where the conversation was going to go thankfully it stopped with just poor Nemo’s passing.  The party went on without further incident except for me trying to ensure my kid was not an absolute maniac.  

As that party wrapped up we packed it up and headed on to the next round of fun.  Sean and I planned a grown-up Halloween party for my co-workers and Kennedy was going to stay at my parents house with my nephews and have a birthday party for my dad.  Everyone seemed to have a good time.  I love throwing myself into planning something and an opportunity to sabotage a diet so mission accomplished all around.

“What’s after this nap?”

 School, work, and then trick-or-treating with the neighbors.  

Inhale the chaos, my friends.  Breathe deeply.