Sunday, September 21, 2008

Blog Challenge Sunday: Public Scrutiny

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 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?

Sunday, September 14, 2008

Blog Challenge Sunday: Simple Pleasures

All of our pleasures are simple! :)

Maddy's favorite activity is watching football on television ~ truly simple. Just turn on the TV, find a football game, and our girl is happy. She is, of course, enamored of her Dallas Cowboys, but is happy watching any game.
Thank goodness for the NFL Network ~ we have football year round.

Rocking in Daddy's chair is the first, and still best, simple pleasure. Fortunately, our girl is still small enough to fit in our laps, so we rock her every day, and she loves it. I love watching Maddy and Daddy rocking together. They usually fall asleep (extra points given for rocking and watching football! lol) and then I steal her to put her to bed. The cuddles she gives, the kisses she bestows, and the pleasure of watching my sleeping child ~ those are the best things in my world.

Wednesday, September 10, 2008

Special Exposure Wednesday

5 Minutes for Special Needs

maddy colors 1

maddy colors 2

maddy colors 3

I chose these pictures for Wordless Wednesday because they show Maddy at school, doing something she's never done before ~ coloring on her own. She'll be 12 years old in November, and she still amazes me every single day. Never giving up, always learning and achieving new things ~ that's my little warrior princess!

Sunday, August 03, 2008

About those pesky test results

I participate in a bulletin board for parenting special needs children. Actually, for several years, I moderated that forum. I gave up my moderator duties last year after a long thought process ~ mostly related to my own illness and ability to participate as fully as I thought I should.

Through the years, the most frequently asked question(s) on that board were about pregnancy and test results ~ a pregnant woman would turn up with an abnormal nuchal translucency screening, or an elevated Triple Screen result, and would immediately focus on Down syndrome (Ds) and the risks associated with it (heart defects, etc.) In pain, full of fear and anxiety, she would post her questions to the board, and pray for reassurance from the "experienced" moms ~ those of us who had "the worst" happen to us ~ an imperfect child. (Of course, that isn't the worst thing that can happen ~ babies die, and so do children, and so do beloved adults ~ that is the "worst" that can happen! Still, most people don't know that, so to them, the thought of giving birth to a child with a handicap ~ or multiple handicaps ~ is "the worst case scenario".)

I wrote the following in response to such a mother-to-be. After extensive Level II ultrasounds, she decided to forego an amniocentesis, and felt resolved to love her child regardless of the outcome of the pregnancy. These are some of my thoughts on that process:

I couldn't say it any better than *name deleted* and *another name deleted* have, so I won't even try. I know many, many children with Ds (and even more with other syndromes) IRL, and the vast majority are healthy, happy kids with great lives, full of things and people that they love.

Just so you know, too ~ Ds is not the only possible explanation for test results that are "off" ~ many (most?) tests provide high numbers of both false positives and false negatives, and the vast majority of birth defects are not even *tested for* in utero. I'm not trying to scare you ~ I just want you to be aware that even if you have "perfect" results during prenatal testing, you can still have a child with differences that are noticeable at birth or later. My Maddy is 11 years old, and with the u/s technology that was available at the time, and no history of birth defects in our family, plus a low-risk singleton pg, her prenatal diagnosis was completely and utterly missed by my OB-Gyn. He was surprised by her upper limb anomolies, as well as her heart defects, in the OR during my C-section. She was diagnosed with Cornelia deLange Syndrome a few days later in the NICU. While I won't classify her as healthy (she is "medically fragile") I will call her the best, most wonderful person to ever come into my life.

I'm actually glad that I wasn't aware of what was in store for my family ahead of time. I was able to enjoy my pregnancy until nearly the end, and when we finally came home from the hospital with my much-wanted and much-loved baby girl, we were all thrilled to the core. Had we known ahead of time, I would have had anguish over her health, worry about what was to come, etc. Sometimes, ignorance is least in my case at that time. Even if I had known, I would have carried her for as long as possible (she was early ~ 34 weeks) and loved her ~ but I think that it would have been harder on me, personally, to know about the trials we had coming. Before her birth (and the sea change in my personality that occurred in the year or so afterward) I would have literally worried myself sick over the "what-ifs".

Now, I am a big believer in making the absolute most of every moment of every day ~ including really crummy days that are sometimes overfull of anxiety and fear. I can center myself no matter where I am by reminding myself of the absolute gift that is one more moment to hold and love my child on this earth. So many don't get that ~ or only get in for a few months in the womb, or a few moments after birth. We've had 11+ wonderful years, so far, and while I don't look too far ahead, I know that loving Maddy has strengthened me in ways that a typically developing child would never have done. Her life is anything but wasted ~ she attends school, has friends, has a loving family, and laughs every day. She is funny, loves a good joke, and has the best smile you've ever lights up her whole face. Yes, she is severely handicapped. No, it doesn't make much difference to her. As far as she's concerned, we're the weird ones, what with all those fingers, and why on earth should she walk when someone can carry her? She uses adaptive signs to communicate with us, and when we're a little slow getting her message, she gives a thoroughly exasperated look and sighs at us. Yes, she is a pre-teen.

Anyway, enough about my girl. I hope your pregnancy is completely textbook in every way, and that your little one is healthy and whole and has all fingers and toes. If not, and the "worst" happens ~ trust me, it isn't the worst, as long as your baby is born alive and comes home with you. There is life after diagnosis (of whatever kind), and while it may be a different life than the one you are imagining now, it's no less wonderful, I promise.

I'm thrilled to be Maddy's mom, and I wouldn't change ~ or miss ~ a thing about this life that we were given.

Friday, December 15, 2006

I think it's time to start updating this page again ~ I cannot believe how long it's been since I posted an entry!

Anyway, since the CdLS-Kids list is now keeping track of blogs, I figured I'd better jump back in. I'll post my first "challenge" entry tomorrow!

Monday, October 22, 2001

Welcome to Maddy's new blog! I decided to start here, since I don't really have time to update her web site on a regular basis. Besides, the web site seems to always be down. I'll leave it up, but for now all updates will happen here instead.

Maddy is doing pretty well right now. She has had the usual battles with ear infections and upper respiratory infections this fall, plus a really nasty bout of flu. She's on antibiotics right now, which means that she has a really bad rash on her bum, stinky gas, and general crankiness. Poor baby. I kept her home from school again today because her bottom is actually *bleeding*. I know this is normal for her, especially when she's on antibiotics, but it doesn't make it any less unnerving when you open your child's diaper and find blood spots.

Maddy will turn five years old on November 22! We're planning on redecorating her room for her birthday. Right now, she still sleeps in a crib. Nana and Grandpa bought her a toddler bed for her birthday (shhhh! She doesn't know about it yet!) and Mom and Daddy will be painting in a couple of weeks. We're also moving furniture and changing the decor (from "nursery/farm" to "little girl"). Should be really cute...Nana is making curtains and comforter for the new bed. I really want to put up a chair rail and build some shelves, but I'm not sure we have time (or the financial resources) to complete all the projects at once. We'll probably pull the room together slowly over the next few months.

Time to get back to work! Thanks for stopping by. I'll update again soon.