The challenge this week is to write about the most memorable experience we've had dealing with the public reaction to our child with CdLS. This is a hard one to narrow down for me! Especially in the early years, we got lots of strange comments and questions. Not so much now ~ people are used to seeing us out and about with Maddy, and she has a whole community of people who know and love her for who she is. Those early experiences, though ~ some are seared into my memory.
I think the first time I fully realized that we would have to deal with scrutiny was right after Maddy came home from the hospital. I had a layaway at a local big box store, and I had to pick it up no later than December 21 at 10 PM. Maddy had only been home for a couple of days at that point, but the weather was mild and I really needed T's help with loading the items into the car post c-section, so we decided to go as a family. We headed to the layaway department, got our things, picked up some diapers and wipes and a few other necessary items, and then headed to the front checkout. Maddy was in a sling in my arms, but just as we reached the checkout stand she started to fuss. Tom took her from me so I could deal with the checker, and was rocking her and holding her. She weighed all of 4 pounds (what were we thinking, taking her out like that?!?) and was adorable in her little pink dress, matching hat, tights, and doll shoes.
The checker started ringing up our purchases, and made some small talk. Then she glanced at T, who was still holding the baby with her head on his shoulder. Maddy was crying, but it was virtually inaudible over the noise and bustle of the store a few days before Christmas.
The checker stridently called out to Tom, "Are you gonna pay for that baby doll?!?"
Tom turned to her, smiling, and said, "We've already paid for her, ma'am!" as he turned Maddy around to face the checker.
The checker let out a gasp. She immediately started cooing over the sweet little baby girl, who was still out of sorts and screaming, silently, over being out of Mommy's arms. The checker came around the stand, calling to her manager to come look at this baby doll. Soon, we had a crowd of chattering checkers, managers, and other assorted bystanders checking out our baby girl.
I heard questions coming from everywhere, or so it seemed.
"What's wrong with her?"
"Was she born like that?"
"Is she gonna be okay?"
"I thought she was a doll! But she's a real baby!"
My face was hot with embarrassment. I was not great a social situations to begin with ~ I preferred to be low-key and observe more than participate ~ and this was definitely pressing me to do more, and be more, than I was comfortable with at the time. This crowd of 4-5 people felt like about 200 to me. Anyway, I grabbed onto that last statement and with a shaky voice said, "Yes, she is a baby, and she's crying, and I'd like to finish checking out and get her home now."
"Bless you, dear."
"Take care of her, now!"
"You be good so Santa will come see you!"
And I put her back into her sling, and we paid and walked out, and I cried all the way home.
Tom couldn't figure it out ~ he figured that we'd had a pretty positive first experience with all those questions, and I later found out that he was right! ~ but I was just totally overwhelmed. I just had no answers prepared for those Big Questions: What's wrong with her? What happened? Why? Will she be okay? I had absolutely no idea how to respond, what the right thing to say was, and how to feel about it all.
Over the next few days, I got angry. I was mad about having to deal with all those negatives, when we were trying so hard to be positive. Maddy was home on Hospice Care, after all ~ they'd told us she was dying, that she had a systemic infection and that she would only live for a few weeks, if that. We were trying to do everything right, and keep positive ~ accepting that we had only this very moment with her, and that we weren't guaranteed any others. Now I also had to deal with answering people's ~ strangers ~ questions? Unreal. Added into the constant sleep deprivation and I was a basket case.
A couple of weeks later, I went grocery shopping with Maddy. This time, she was in her infant seat, and it was just me and the baby. A quick trip through the store, and I had what I needed to get through the rest of the week. We'd been to the pediatrician, and she was having a good day, so I thought we could handle that short diversion. It was chilly, so she was wrapped in a blanket when we arrived, but the store was stuffy so by the time we reached the checkout stand, the blanket was only covering her legs. Her arms were visible, along with her shock of thick, curly hair, which I had styled with a pink and white bow, so everyone would know she was a girl. ;) The nurses at our ped's office had been so sweet to us, and I was basking in the glow of taking care of business ~ becoming a true mom to my baby girl, who wasn't exactly thriving, but was definitely doing better than anyone expected!
Anyway, we got to the checker and I unloaded my purchases. The baby was sleeping (she loved being pushed in the cart! and that made me wish I had one at home! lol) and so I didn't move her from the cart.
The checker looked at her and said, in a snotty tone, "What happened to her arms?!?" No other greeting ~ no hello, no "what beautiful hair", nothing ~ just "what happened to her arms?"
"She was born that way. She has a rare syndrome called CdLS."
"Oh. Well, will she always be like that?"
Instantly, anger flooded me. I set my jaw, looked her square in the eye and retorted, "No, she turns into a pumpkin at midnight. Now check me out and quit talking to me."
As I walked out of the store, I started to cry again. Hot tears, streaming down my cheeks, landing on the soft blanket covering my sleeping baby girl. I sat in the car after I got her situated and the groceries loaded in the trunk and just sobbed. I was embarrassed ~ again ~ at my reaction to that checker. But I was still filled with anger. What right did these people have to question me? And if they were going to question me, couldn't they at least do so nicely?
Really, it wouldn't have mattered how sweetly the question was asked. The fact that there was any comment made other than how beautiful our child was ~ that was going to hurt no matter how kindly the person went about it. I didn't really realize it at the time, though. I was so caught up in just getting through one more feeding, one more diaper, one more weight check, one more doc appointment...one more moment to hold my baby. I couldn't see the forest ~ I was too busy ducking around all those damned trees!
I sat down one day when I had 5 minutes to myself and wrote a script. After that, while I brushed my hair, or washed my face, or pretty much anytime I was in front of a mirror, I would repeat answers to myself. "She has CdLS. It's rare. Yes, it's genetic. No, we aren't any more likely to have another child with CdLS than we were to have this one." And so on. Eventually, I became an expert at the 5-second- answer-pass-a-CdLS-brochure-and-walk-away maneuver. Nowadays, I actually welcome those conversations ~ they give me a chance to talk to others about all the cool stuff that Maddy can do, and has done, and they've expanded my ability to talk to strangers. ;) I definitely have much less social anxiety nowadays than I had when she was a baby.
It was a long process though, getting to this point. And it still seems unfair sometimes that we have to answer questions at all. Why can't people just see that every single one of us is unique? We all have special needs in some way. I'd no more walk up to a stranger and ask if the child she is carrying around/walking with is biologically hers than I'd fly to the moon! but still people do that to us all the time. Even now, it strikes me as odd behavior from the "normies" out there.
Still, I carry a stack of brochures with me almost everywhere I go, and I am often the first to whip out photos if my girl isn't with me. ;) I'm ready and willing to educate you. Maybe someday we'll have a world where most people know about our kids already, and there is no longer a need to explain.
I can dream, right?