We were having morning coffee, my friend and I . The two of us were visiting with a third friend. All of us had helped each other grow up as girls, before, during and after college and this was a long talked about, finally arrived, reunion. I was just off the phone from a series of calls to my husband, my daughter’s doctor. her housemother, the school nurse, and my daughter herself, sobbing and frightened. She had had still another life threatening medical emergency the night before and while all was now well, I was trying to pull all the pieces together while I was sitting on a porch in a foreign country, very far away.
I put down the phone at last and my friend approached hesitantly. “I don’t know whether I should say this or not…” she said.
Now in my experience, when someone starts with this, the only wise response is “Well, then… you probably shouldn’t .” I have in fact said this in similar circumstances and more than once too. I mean…nothing good is going to come from such a beginning… right? No one after all says, “I don’t know whether I should say this or not … but these ginger scones you baked are the most heavenly thing I have ever tasted.” or “I don’t know whether I should say this or not … but you look like a fashion model with that new haircut!”. No . “I don’t know whether I should say this or not…” generally does not bode well for what will immediately follow.
Not to mention, as the mother of a now adult child born with frank brain damage (which over the course of her first year would in some ways become the least of our worries for her), I have heard a very lot of ignorant remarks from an awful lot of people. Many kindly meant…and some not. And many, many of those remarks began with , “I don’t know whether I should say this or not…”.
But I looked up to my friend’s face, this face that decades later still holds for me that of the eighteen year old friend with whom I had pored over lyrics of our favorite band’s latest release together looking for meaning. The friend who had known my deepest secrets. The friend I had had countless adventures with… and I decided to let her go ahead with whatever it was.
I squared my shoulders and girded myself..I could almost feel my very molecules stacking in crystalline formation as I prepared myself for what would come next and said “Yes?”
“When I first heard about M_ being born, ” she said “I thought to myself. ‘ Oh No! Of all people…’ You were so delicate, so creative, so happy-go-lucky and I thought ‘How is this ever going to turn out?'” She paused and her eyes began to fill with tears and she said “I am so proud of you.”
I told this story to two other friends back at home a couple of weeks later. Both also have children with special needs, roughly the age of my daughter. Both of them laughed when I got to the delicate part, they have only known me as a mom and both would use the word strong and never delicate to describe me (as I would them). And I am, it is true . I am strong and I wonder if I would be without this amazing life entrusted to me… the strength was always in me, but I never developed it, never had to.
The countless ER visits (literally..I could not tell you how many, I have no idea how many..there have been SO many), running down the streets of NYC with a toddler in my arms to get her to a hospital when there were no cabs in sight, the surgeries, the evaluations, the conferences , the ignorance, the advocacy…raising a child with special needs who is also medically fragile in this world is undeniably hard, it just is. And then there is the parenting itself, helping your child navigate a world that has a higher than average amount of prejudice, bullies and ignorance. Making decisions for your child no parent should have to make. Being the one your child can count on to tell them the truth when it is far easier not to… all of it. Strength is called upon and grows in these circumstances… that is, it does if you are one of the lucky ones and I have always been lucky.
And I think people, on some level, know all this when they see from the outside the parenting that is involved for parents of children with special needs.. What is less easy to see are the things that make strength possible.
When I got back from my trip I drove out to the farm where my daughter lives for a “girls weekend”. On deck for we two : dining and shopping and a stay in a lovely old B&B nearby. The trip was unscheduled but the medical scare of the previous week had made me urgently feel the need to see for myself she was now well (even though I had been thoroughly assured that that was the case ).
That Friday night, in the middle of the night, her long and beautifully tapered fingers gently tapped my wrist. “Mom, Mommy?” she whispered. “What is it Honey?” I managed to get out from under the weight of sleep. “Can I hold your hand?” she asked. “Um, sure you can Hon.” I croaked out in a sleepy voice. I felt her hand firmly and gently in mine. A moment passed and then she said , still whispering, “Isn’t this fun ?” . I smiled widely at her in the dark, even though she couldn’t see me, my heart as light as the down in our pillows, “Yes. Yes, kiddo, it sure is. It sure is”.
It sure is.