i heart mimi

In celebration of sunshine, not rain, I took a hike with my daughter, my niece, and her parents, at Ledges State Park, a favorite childhood haunt. The girls hiked like little troopers through the thick woods, picking up centipedes and interesting leaves along the way. As we approached an area of dense overgrowth, we weren’t sure which way to go. My daughter saved the day by consulting her little compass — attached to her festive walking stick, along with a Happy Meal princess doll — and proclaimed “We need to head north!” (Her navigation skills aren’t to be trusted.) We ended up walking and listening for water, and were eventually rewarded for our efforts with a meandering creek bed. Shoes came off, and little girls splashed for hours in the cool, clear water. We skipped rocks, poked at moss, counted dragonflies, and thoroughly enjoyed a lazy summer Sunday. We have another appointment with Mother Nature in a week or so.

3 Comments | In: Art and Photos | tags: Centipedes, Creek, Daughter, Family, Hiking, Ledges State Park, Mother Nature, Nature, Niece, Outdoors, Splashing, Summer, Water. | #

I’ve told stories before of how doctors once said my daughter would probably never speak intelligibly, read, or become a contributing member of society.

How wrong they were.

And how disappointed I still am because of the angst they caused almost nine years ago. I was beside myself with the worry that I would be caring for her forever, and that she would always be dependent upon me.

I’m dumb.

Or maybe the professionals are dumb and they’re so deeply invested in textbook learning and dissemination of false information that they’ve never taken the time to really know people with Down syndrome, nor have they learned that the world is composed of all types of people, and just because one does not possess an advanced degree and a BMW does not mean that life holds no value.

Sorry. Soapbox.

The beautiful creature you see above, who is standing in the ocean for the very first time in that photo, is among the smartest people I know. She’s eight. She’s wide-eyed. She’s always up for an adventure.

And she reads, writes, and, like her mother, fails miserably at arithmetic. She’s a right-brainer, a bohemian, an artist.

And today, she melted my very heart. We were lying on the bed in a futile attempt to take a cat nap, but she was just talking. And talking. And talking. About birds, and her hair, and Toy Story 3. I was getting a little aggravated because I was really sleepy and just wanted her to close her eyes for 15 minutes. We were snuggled under the covers, my cold feet wedged under her warm legs, and I was drifting off.

And then she said to me, “Mom. You are my heart.”

Wow. Right back at you, kid.

In my life, I have never loved another person as I love her. And I don’t mean that I haven’t loved my other two kids, because I have, and do. But this is different. And maybe the way I love her has contributed to the demise of my marriage. I suspect it has. But it’s something I can’t help. Because when she was born, I didn’t love her immediately. I was scared of her. I was terrified she would die. I didn’t want to get attached to this creature I didn’t understand.

Bad mommy. I know.

She was six weeks early. I wasn’t even prepared had she had been completely “normal.” So you can imagine how the words “Down syndrome” felt going down. Kind of lumpy and suffocating. Luckily … and I chose that word carefully … luckily she spent seven weeks in the hospital, learning to eat. A lot of preemies have trouble with suck, swallow, breathe. And those seven weeks were the darkest of my life. I barely functioned. My two older kids loved it because everything they asked for, they received. I couldn’t make a decision, so I said yes. I was craptastic.

But that ended, and she came home, and she blew me away. I had to adjust, and reconfigure some plans. But that kid went everywhere with me, and for the most part I molded her around my life, instead of the other way around. It was decided that she would not be treated differently. She would have to meet expectations, and work for what she wanted, and pull her weight. And she does.

And she’s amazing. Her sense of humor has recently emerged, and her corny play-on-words jokes make me both laugh and cry. Because she does come up with them, and because she can.

Down syndrome is not easy. But it’s also not a death sentence for parents. No matter the functional level of a child with Down, there is joy, and hope, and a big, bright future.

I used to tell myself that if my daughter could communicate, I would be happy. Then I said I would be happy if she could learn to read. Then it became the ability to function at the level of a fifth grader. (Jeff Foxworthy would be proud.) But I have clearly been putting limitations on a person that surpasses expectations, and laughs at me as she does it.

She’s a great kid. She takes me by surprise all the time. She’s my heart.

2 Comments | In: Family Matters | tags: Arithmetic, Birth defect, BMW, Daughter, Depression, Doctors, Down syndrome, Family, heart, Love, Mental retardation, Mother, Parenting, Read, Toy Story 3. | #

My friend is expecting, and learned today that her baby has a 1 in 2 chance of having Down syndrome. She text-messaged me this afternoon to tell me, and to say that she’s scared. And I understand why. How terrifying to A) not know and B) not know what it really means if the baby does have Down.

We talked on the phone tonight, and I tried very hard to be impartial. I even told her how hard it is for me to be impartial because parenting a child with special needs is hard, hard, hard, but it’s also wonderful and rewarding. It’s a life in which the small achievements are celebrated and the big ones are cause for a sigh of relief. It’s also a life in which plans are drastically altered, lifestyles are forcibly changed, emotions are drained and marriages are tested.

I don’t envy the position my friend is in. I had the luxury of not knowing. I believe that God understands the extent to which I can be a complete basket case, and therefore had mercy on me by concealing my daughter’s extra chromosome until birth. The moment I saw her, I knew, but I didn’t have an inkling before that.

Tomorrow, my friend visits a genetic counselor, who will walk her through the ins and outs of tests she can have, things she can expect. And while she’s in that meeting, I will be thinking of and praying for her. And hoping that the person helping her make decisions that will completely alter the course of her life offers a balanced perspective, not just a clinical checklist of all the problems a child with Down syndrome can have. I hope she won’t feel pressured to terminate, but instead will be presented with factual information so that she can decide with her head and her heart. Doctors, nurses and social workers mean well, but in many cases they just cause more despair.

And I hope that if the baby does have Down, I hope she will carry it, nurture it, love it and raise it. I won’t tell her that because just as I don’t want medical professionals to influence her, I don’t want to influence her. The last thing she needs is pressure from me to choose something I want, rather than what she knows is right for her. So I will only tell her that I love her, and I will support her in any way I can.

I hope that when she sees the ultrasound tomorrow, she will see the big picture. Not just the markers they’re looking for, or a problem with the heart, but the flesh and blood and bones that form a baby. Growing inside of her is the product of a man and woman who fell in love and made new life.

For more information about Down syndrome, please visit the National Down Syndrome Society website.

No Comments | In: My Unsolicited Opinion | tags: Baby, Decisions, Down syndrome, Family, Friend, Genetic, NDSS, Parenting, Scared, Tests. | #

I used to cry all the freaking time.

Honestly.

Barely a day passed that I wasn’t blubbering over one thing or another. I cried in my car. I cried at work. I cried in my beer.

OK, my vodka and cranberry. I don’t like beer.

I recently cried every day for 33 days straight. Some days it was just a few tears, caused by stressful circumstances. Other days it was full-on bawling because my world felt so out of control. And it wasn’t just a feeling. It was out of control.

Then I moved. Out of my house. Away from my husband. With my daughter.

This is the first time I’ve said it aloud, to the world. Not because it’s a secret, but because I just haven’t been able to talk about it until now. I moved out of my house.

It was the hardest thing I’ve ever done, yet it was long overdue. I paint my husband in a pretty positive light on this blog. In many ways, he’s a great person. But things between us have eroded, and he made a conscious decision to stop coming through for me. Which caused me to stop coming through for him. (Although he would argue that I went first, and he followed suit.)

But since this is my blog, I get to tell my side of things.

The gory details do not matter. Honestly, they infuriate me to the point that rehashing them will only make me … cry. So let’s not go there. This post is about not being a crybaby.

My first week out of the house was horrific. I was a robot, going through the motions, plastering on a smile for my daughter. When she wasn’t around, I was crying. In my car, at work, in my therapist’s office, in my beer.

I felt completely lost, alone, and terrified. I was concocting ridiculous schemes in which my husband and I would cohabitate in our house, raise our daughter together, and keep our money pooled so that neither of us would suffocate under the weight of our financial obligations. I was figuring out how we could be under the same roof, but not “together,” and analyzing how I would feel when he started dating women I don’t approve of. Ugh.

And my therapist must have been pretty concerned for my emotional state because he was thinking it was a decent idea. Or maybe he just knew I needed that (imaginary) lifeboat that week, so he played along.

Week two was a little better. My landlady is an enormous pain in the ass, and my dog’s separation anxiety is off the charts. Every morning, I haul his tiny butt to my house, which is just around the corner (I know) and stick him in the house so my landlady, who occupies the other half of this depressing duplex, won’t get sick of his howling for me, kidnap him again, and stick him in her compost bin. Not lying. Black dog. 90 degrees. Compost bin.

Where am I going with this?

To the place, I guess, where I’m starting to adjust. I now have blessed Internet, and two pieces of art are hanging on my wall. I have rooster glasses from World Market in my cupboard, and nobody to blame but me if I binge eat, or drink too much, or don’t put away the laundry.

I am not happier. I am not glad things worked out this way. I miss the man with whom I tried to build a life. I miss my home. This is not my home.

But I don’t cry every day. I cry some days. But not every day.

And I’m kind of proud of myself for doing something, rather than sitting around in my misery. We both needed me to move. We both needed to figure out our lives. Lives that are now even more hectic, and the true victim is the 8-year-old that is getting bounced around, and misses Dad when she’s with me, and misses me when she’s with Dad.

And I’m a little scared because I can feel myself moving away from the desire I once had to make this broken, shattered, destroyed marriage work. The fact that I wanted to was simply a testament to my ability to feel hope in even the most dire circumstances. That I believe God can heal hearts if said hearts are open to healing.

But I had to shut that down because I was drowning in my own tears. I was feeling terrible every second of every minute of every hour of every day.

Maybe one day the clouds will clear, I will have an “a-ha” moment, and the rainbows and fairies and unicorns will dance once again in my heart. Or maybe I will have to do some hard work, and look realistically at my life, and decide that despite how bad I feel and how much regret seeps into my every thought, I have to make the choice to be happy. Even if I don’t feel happy.

For now, I’m just getting by. But I’m not a crybaby anymore.