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…..in 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 takinga 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.