Parenting the Parents

My saving grace at surviving parenthood is support, the advice and experience of others who have also made gigantic mistakes but survived, and better yet so have their kids. Sometimes it’s the earned wisdom of “elders”, sometimes it’s the learned knowledge of new sciences and studies, and sometimes, now and then, it’s my gut. Most days I feel lost, unsure, and confused. We try really hard for at least a few smiles each day, no matter how bad it gets, and always gratitude, but there is also always that feeling of being unsure, at being weary of the next corner. Some days deciding if I want coffee or tea is too overwhelming a decision to make I am so bogged down by the emotional reactions I have to sift through and the major decisions I have to make as a mom. Yesterday it was do we give him the two enemas or not. Good Times. So, even with all the support out there, I wish I had on site professional parents to parent me as I pretend to know how to wisely parent my, smart, funny, tough, kind, beautiful and sick child.


I find this much more difficult because Buddha always seems to be in and out of the hospital, getting poked prodded and run around like a test monkey, not sleeping well or sleeping too much, seizing and recovering, constipated from his diet, or crying because his friends don’t know what to do with him when he’s well and then sick and then well and sick again. Or, he goes just enough days without incident that I let my guard down and BOOM! Those are the really scary days. The balance is exhausting. And all the while I’m trying to give him opportunities to develop his own self-worth, help him flesh out his passions, instill a sense of responsibility, and, oh I don’t know, maybe give him a happy childhood?  Geez!

Where are the rules for us?

Who is parenting us? Who is making sure we’re not totally screwing them up so that just when we, maybe, get them healthy enough to enter “life on their own” they are not nailed back down because of issues, insecurities and immovable obstacles we created in them trying to save them? It’s endless!

How do I prepare him for a grown up life when I feel so unprepared for mine?

As parents we have playdates to practice our parenting styles, spreadsheets to track growth and progress, Instagram to document how damn cute they are, and FaceBook to discuss everything from potty training to getting bullied in school. Add an illness to this mix and we are now running a 100 mile marathon naked while being shot at, up hill both ways… Antarctica.


Lucky for me I think I may have hit on something helpful. My husband. No, I didn’t hit him or hit on him (there’s no time for either) but upstairs today as I was taking out our Valentines decorations, pretending we didn’t just spend the last two days in the hospital and worrying over this new cough, and he was downstairs playing hockey with Buddha, I realized that of all the hats we have to wear as parents of a child with a “condition” one of the most useful, if not the prettiest, is that of a parenting facilitator.

He is there to say, “Hey are you ok? You’re being really rough on him?” And I am there to say, “Hey boys, 3 games of hockey is enough, Buddha needs to rest and drink some water.” I kid a bit of course, if it wasn’t for Dave I’d have every second of every day planned out for some healthy educational or inspirational, fun activity. He is my balance if not my reason for rolling eyes and dramatic head-slaps.

My point is that we are learning to communicate with each other in a way that not only brings us closer together and makes us better parents, but it gives us a sense of comfort. We don’t feel so alone anymore. Because this journey has made our lives more complicated and difficult than we could have ever imagined we are vigilant about seeking out advice from the pros along with trusted friends and family. And they have been invaluable, literally saving me. But it’s still left to us, day in and day out, to be what Buddha needs to keep him physically and emotionally alive. We are there to remind each other of the steps that work to calm our son or help him through a problem. We are there to give each other a break when the other one gets to a breaking point. And we are there to hold each other accountable, to remind each other or advice each other, to help each other. I’m even taking criticisms a bit better….a bit. This success all stemmed from a necessity to be better equipped to help Buddha grow physically and emotionally. We didn’t have a choice but to be there for each other if we wanted to be there for our son. And we are better for it.

But most importantly, I’ve seen a positive change in Buddha. He is less likely to scream and hit, his emotional vocabulary has grown and is being used more naturally, he has a deep empathy that blows us away, and his disappointments have gone from defcon nuclear to mildly overdramatic. (Because of his seizures his emotional filters are not as developed as they could be so big feelings can be a big problem for his spirit.)

The irony is that if Dave speaks to me like a child I will likely slice him through with a look, an active ignore, and later a tirade. (I don’t believe in half measures.) However, without him as my parenting reflection I would still be lashing out at Buddha in attempts to bury my fear for him. My demands would still be painfully unrealistic and I would be enabling him more than I already do. Dave would still be spoiling him more than he already does or nit picking his every move. The balance is still exhausting, but it’s not as hard when we do it together.

We were not this cohesive before Buddha’s illness but now when we can reflect each other’s fears in a loving way we parent each other’s parenting so that we are more confident, if not better, parents. That may sound new-agey, but thank God for it! We are learning what Buddha needs by helping each other name our fears and counter them with love and communication. (We have a lot of therapy.) But it’s working! It’s helping. It’s even strengthening our relationship.

Necessity is the mother of invention, as they say, and until Rosie from the Jetsons gets here to pick up some of the slack and make me mother of the century, I am grateful for the knowledge of all who have come before me but mostly for Dave. I am grateful that Dave and I will continue to help each other be the best parents we can to the best kid we know.




Are You Lost Too?

Mom Disability Lost


I know how it feels to be lost. To wake up one day and realize you aren’t who you were or who you thought you’d be. It’s as if over night you have become a depleted blob, robbed beaten, and sad. Viewing the street from the corner of your swollen eyes, I know how it feels to be blindingly terrified of much of ourselves we’re capable of losing. Once, of course, you realize you’re lost to begin with. It’s an epic blackout that plays more like a bad TV pilot than life. How is it that the rest of the world can go on humming forward as it always has without anyone noticing that you are not the same, that you are stuck?

I remember exactly where I was when I suddenly awoke and realized I was still here after months of numb periphery existence. I awoke in the same life but a different world. A sadder harder world, a world that took me in but didn’t give me a place to be, to feel, to live as the me I used to be…before diagnosis.

I was walking to”my” corner coffee shop, as I had done a hundred times before, and I noticed how when the light hit the pavement it suddenly felt like a decorated set on which the director just yelled action from some unseen on-high chair and not my daily grounding of repetition and caffeine. I remember thinking how the people I passed didn’t seem real, they were 3 dimensional but had no substance. I kept wanting to reach out and touch them to see if in fact they were the unreal ones or if, as I suspected, I was the out of place character in the scene. If I was the one without substance.

This new observation was an awakening to a hollow existence. I became overwhelmed by a sudden aloneness and everything felt off and everyone apathetic. A Twilight Zone land perfectly designed to subtly tear away at my sanity. To undo me slowly while some maniacal overlord played tick tock with my demise by making everything look and feel real and normal, but ensuring that I knew, in my bones, the neither the world nor I was or would would ever be the same again.

Awakening to life but with the knowledge that I would never feel safe again was both humbling and biting, a relief and a despair.

The, I-have-a-child-with-a-lifetime-illness world, is a world where you spend your days sprinting from one place to the next in a mass of panicked mania only to instantly drop and drag your soul from place to place, immobilized with your too heavy burdens. It is a place where fight or flight mode lasts for days, months, years while you try desperately to just hang on, only to finally awaken one day and realize you’re lost. Your innocent child’s destiny, all too starkly presented, is not yours to design and while you were coming to grips with that hateful truth, you’re body has changed, your passions washed out, at best, your friends don’t know the new you, your husband is a ship passing in the night, and it seems you have aged eons. It’s difficult to find words for adult conversations that don’t include medical jargon or prayers scheduled carefully around daily appointments. Your mind is numb and your soul is tired and you just want to rest and catch your breath. And your heart? Your heart is just flat out broken.

your heart has not forgotten you image

And yet, still, always, you are pulled along by an instinct, a drive, as old as evolution itself, maternal, searching, trying to understand this new foreign-illness-language.

You’re not who you were, you’re not who you thought you’d be, nothing is as it “should” be and you’re not sure you’ll ever be real again let alone rediscover your own spirit.

We’ve been there! We are there! We’re trapped here in the hell of being there and we too are dying to be found.

Please don’t give up, you are not alone! You will not be lost to yourself forever. You are STILL a wonderful, beautiful, unique individual. In so many ways, deep important ways that really make you more than you ever were before, your spirit shines brighter because you’ve made it here! You are a grown up with your own, feelings, dreams, thoughts and aspirations. With your own road to travel, not just your child’s. I know how it feels to be lost. I know how it feels to think you’ll be lost forever. I know you! I know how hard you’re trying but that times are hard because the kids are sick and they may never get better so there isn’t the luxury of self.

I know how it feels to be lost.

But…… even with all that, we can be found.  We can!