I wrote this a while back, but didn’t publish it. Yesterday, I had someone say that me holding back with something I should have said a year ago could have changed decisions they made in their life had they read them sooner. I don’t want to keep my words to myself if they could help you. These are just random thoughts I had during a bad day as a special needs mother. But they are relevant most every day of my life. Writing is an escape. It always has been. Sometimes, the escape comes in creating fiction. Other times, it’s just trying to put all the emotions trapped inside my body into words that actually make sense...because usually the thoughts are so jumbled that the only way to cope is to see them in black and white. I’m sure there are those who will judge my words, and that’s fine. They aren’t for you. They are for me. If they help you, then that’s just a cherry on top of an already sweet sundae.
"They say there are five stages of grief. Not everyone will grieve in this order, nor will everyone go through every stage."
Some days I wish that there were not five hundred million red taped hula hoops to jump through on a daily basis, especially as a special needs parent. Our plates are already so full, and most days, we don't know how to fit one more single pea onto that plate without everything spilling over the edges into a jumbled mess.
Today is one of those days. I've had worse days and I've had worse weeks. But lately, it just feels like everything is piling up on that plate, and I'm being expected to speed up faster and faster as to not let that proverbial hoop fall, to prevent that last pea pod from being the cause of everything going overboard. The pressure to keep everything contained and from falling is sometimes crippling. So, a thought that is always at the back of my mind, put in a very special, small compartment is released and starts to move back and forth like the tides that ebb and flow. I recognize this stage. It's the bargaining phase. Why can't things just be easy for once?
This stage is so dangerous because we can't live our lives on hypothetical questions or with a false sense of reality. The alternative to this hula dance isn't a cure or a remission because there's not even an effective treatment for mitochondrial disease. Instead, the alternative - the break - from hula hooping is for it to completely fall to the ground, for your world and heart to shatter into so many jagged, irrecoverable pieces because your child or loved one lost their fight from this cruel disease.
That brings me to thoughts of my friends. Thoughts of a friend who have buried their five year old boy on the anniversary of him getting the flu one year earlier, which led to his body slowly shutting down because the mitochondria were never able to recover. My mind takes me to the photo that crossed my feed a few days ago of a young mother holding her five month old baby's ashes, and I think to myself that she probably wonders how that hoop fell to her ankles so quickly. It's not like she can pick it back up and start to twist again. Once it hits the ground, it's over. I can only imagine that looking at the hula hoop, or even seeing others who are still able to keep it up, probably feels like they are being swallowed by the largest black hole in the universe - that even the thought of touching it is probably like letting an elephant stand on their chests. Not that I know what that pain feels like. And I hope I never do. As a romance writer, I use fictional worlds to escape reality. The same daydreamer in me allows my mind to often wander to not only the 'why can't it just be better' side, but the 'what if my hoop falls', and also the 'what I would give to be able to fight to keep a red taped hula hoop up on my hips for a few seconds longer' sides. And the latter two are enough to take my breath away, make my chest heavy, and tears prick the backs of my eyes.
This all leads me to guilt. Because when I think about those people, I am relieved and thankful. Not only am I able to swirl one of those hoops, but two, and even as an author, I'm not sure how to verbalize how relief and gratefulness translate to guilt, but it does. Maybe it's the gratitude that I don't know firsthand what those mothers are experiencing. Maybe it's remorse that I'm thankful for my kids just the way they are. I don't know them any different. I don't know my kids not being sick. I wish I did, but I don't. It's not like cancer where we had years of them as healthy children, and then suddenly they were sick. Not to diminish what cancer families go through, but I have never had that experience, and sometimes anger and guilt creeps in because I'm envious of the time they had with their kid when they were healthy, and the hope they have in treatments and thoughts of remission, the hope of a break from constantly trying to keep that hula hoop up without losing the one(s) they love.
So, I go back to the first sentence. There are five stages of grief. I'm not grieving, I'm living a very blessed life. Well, maybe like the poem, Welcome to Holland, I am grieving a little. Or maybe a lot. I grieve that my plane never arrived in Italy, but I've had almost ten years in Holland, and Holland truly is one of the most beautiful places I've ever been. But I don't think all of this is grief. I'm frustrated, yet thankful. People who grieve aren't thankful for their grief. So my question is what do we call these stages that special needs parents often go through?
I'm not sure I'll ever know what to call these stages or be able to name this journey of being a special needs mother. What I do know is that each day I can keep my hoops swirling and twirling on my extra wide hips is a gift, and there's nothing to grieve or wish away about gifts.
