
Ah, Memorial Day Weekend--the unofficial start of summer and a time to honor those brave souls who made the ultimate sacrifice for our freedom. For many it's a weekend filled with a frenzy of activities that usher in the impending carefree days of summer--BBQ's, beach days, ball games--a three day preview of the season to come. As we leave behind the the burdens of winter with its frigid cold and warm our faces to the sun, an energy spreads across the collective that whispers, "you've made it...it's time to let loose and feel free."
It's ironic then that for us, the invisible, yet ever present shackles we drag around as parents of a child with complex special needs feel extra heavy on this holiday when we're all feeling grateful to be free. You see, in our family, holidays and celebrations usually translate to dashed hopes and lowered expectations.
We are almost thirteen years into our battle with Dravet Syndrome, a rare form of intractable epilepsy that stole our family's freedom when our first born son was just four and a half months old. For us, the arrival of summer means one seizure trigger after another. Heat? Seizure. Fun? Seizure. Excitement? Seizure. Late nights? Seizure. In what is perhaps one of the more cruel features of our son's condition, the things that bring most people joy bring us to our knees.
You can probably see why I have invited you to this pity party. It's so easy to lose yourself down the rabbit hole of sadness and despair when facing the daily realities of life with medical complexities. Just yesterday I found myself at the neighborhood pool with my kids. However, unlike the rest of the families who were there to splash around together and enjoy the joie de vivre this time of year brings, I was resigned to the parking lot, in the comfort of our temperature controlled family van. It was the best I could do because my ten year old daughter desperately wanted some pool time, but with my husband at work and my son in tow, it just wouldn't work any other way. So I drove over to the pool, let my daughter out and parked strategically in a spot where I could watch her while she played. There I sat for over an hour while my son sat contentedly with his favorite YouTube videos in the back and I up front with my pity party of one.
However, dearly beloved readers, I must admit that I have gathered you here today under false pretenses. For you see, though the occassional pity party is inevitible for all of us, a hospitable home it does not make. If I have learned anything from this decade's plus journey it's that though these feelings of sadness, resentment, frustration and hurt will inevitibly rise to the surface, we can't swim in them forever. At some point we have to pivot from pity to P.I.T.Y.
From Pity Party to P.I.T.Y. Party
If you've ever been in a situation where you have felt slighted, ripped off or cheated out of something you were entitled to, you know how quickly the spiral can take over. First you're in denial, then you're angry, then you're indignant, and then, well, then you start to feel those feelings manifest in your body. Your back hurts. You get a headache. Your stomach is off. You start to lash out at those around you. Lose your temper. Despise your own company. These feelings are not unique to parents of children with complex special needs. They're universal. However, the gift of having to battle these feelings every day for years on end while simultaneously fighting for your child's life is that eventually you get tired of your own you know what.
Over the years I've learned that moving from pity to P.I.T.Y. is a practice. Just like a great yogi is always in practice, so is the medically complex parent. So just what is this P.I.T.Y. that I speak of? Let's dig in...

P- Pause for
I - Introspection and
T - Thankfullness to
Y - Yield a New Path
The journey from pity to P.I.T.Y. starts with a well-timed Pause. The key here is to recognize when you're headed towards the low vibe pity state and stop. Stop the spiral. Stop the negative self-talk and R.S.V.P. "unavailable" to the same old ish. When you intentionally pause, you allow yourself the space to embark upon Step Two of the P.I.T.Y. party protocol, Introspection.
There is a theory in the self-help space called "Radical Acceptance" and while its merits are many, I'm not going to go too deeply into that in this blog. What I do want to emphasize though is the premise from Radical Acceptance that Pain + Resistance = Suffering. That's right, the more we resist our pain, fight against it and push it down, the more we magnify our suffering. It's critical that we take the time to be introspective--to not only sit with our feelings and acknowledge them, but to also choose to focus on gratitude and all that we do have to be grateful for.
Yesterday, as I sat in the car overlooking the Memorial Day shenanigans ensuing at the pool just out of my reach, I wallowed in the woe is me-ness of the moment for a bit, but then I remembered to be P.I.TY.ful. So I intentionally stopped that train of thought and hopped on another one. The train of Step Three, Thankfullness.
I looked around and saw my beautiful neighborhood, one that I dreamt of long before I moved into it. I heard my son giggling in the backseat, blissfully uninterested in what was happening just twenty feet away in the pool. I caught sight of my daughter splashing with a new friend she made five minutes before (because she is amazing and makes friends wherever she goes). I thought about my husband who was at work on this beautiful day, providing for our family while I got to be home with the kids, making sure that our son was well-cared for and safe and that our daughter was experiencing some Memorial Day fun of her own. Less than ten minutes of introspection and thankfullness completely shifted my perspective. I let go of the resistance I was feeling and dramatically lessened my self-imposed suffering. From there, I was able to embark on Step Four of the P.I.T.Y. party, Yield a New Path. It's a practice. It's a process, but I'm telling you, it's worth it.
As my daughter hopped back in the car with a sopping wet beach towel and satisfied grin, I made the drive back home in a totally different headspace. To be honest, the last thing I'd ever want is pity and the last place I'd ever invite anyone is to a pity party I was hosting. When I stop to think about it, we are blessed. We are free (or as free as our thinking allows us to be). And in the end, I got my pool day, albeit the day after Memorial Day and I used the whole experience for good...to write this blog and hopefully help you and others find their way, over and over again, from pity to P.I.T.Y.

That was beautiful you guys are amazing. Love you all to the moon and back.
Carinne, you amaze me. Your intelligent, thoughtful writing is so professional and polished. I know you will help many people with your sensitive and insightful blogs, 1 on 1 help for other parents.