Wednesday, April 30, 2008

This I Believe

I recently submitted this essay to NPR's This I Believe.  It's a really cool project and I enjoy reading all the essays.  They archive every one they receive on their website.  Mine should be posted in a couple of months.  If you have read my blog you will see I've repeated many of the same things, this time just all put together in a way that tells what I believe.  It's a good question to ask ourselves.  Which is probably why Edward R. Murrow started this project in the first place. Sometimes it seems we don't even know what we believe until we're forced to examine it in the light.  So here's my belief all opened up and under the light:

I am haunted by a photograph.  It's a picture of me in the nursery standing proudly beside the crib we had just put together that day.  Fourteen months after our son was born, he was diagnosed with Williams syndrome.  The girl standing in that nursery is now gone.  I wish I could go back to that moment and gather her in my arms, that ghost of myself, and warn her that her heart would soon be broken into a billion pieces.  I would let her know that she needed to hold on while her life whirled around her and reassure her that when it settled, she would find the person taking her place would be much more sensitive, compassionate, and in a way, more alive.  

Louie will be three in June.  He doesn't yet walk or talk.  The parents of children with special needs live in a constant paradox between realism and hope.  I have let go of many of the expectations parents typically have for their children.  As I drive by soccer fields on a Saturday morning, families scattered about with folding chairs and coolers, I realize yet again, that probably won't be us.  I have accepted that we won't go car shopping on Louie's sixteenth birthday.  Maybe it's a defense mechanism triggered when one cares for a child with special needs.  It seems negative to those on the outside, but to me, it's my suit of armor.  And I need it for the battles I fight as I advocate for my son and of course, the battles I fight within.  

This tiny child, with starry blue eyes and a lopsided smile, looks to me to meet his every need.  Many times, it's a guess.  And other times, it's what I believe he needs, what he undeniably deserves.  My voice does not waver when I let people know that when they use the word 'retard' as another word for 'stupid', what they are really doing is insulting an entire group of people - those with the medical diagnosis of mental retardation who simply cannot organize themselves and fight this offensive use of the word.  

Now I sit confidently at the head of a conference table during school meetings.  I ask the hard questions.  I require accountability and endure the awkward silences of confrontation.  I document things.  I follow up.  I learn special education law and memorize Louie's rights.  I am an advocate for someone who deserves an education, to have a chance at independence and above all, to live a valued life.  

I've come to realize that there will always be those moments when I revisit the hurt.  Graciously, the pain subsides and I am reminded of who I am.  I am Louie's mother.  His voice.  His advocate.  This I believe.  More than anything, this I believe.  

Tuesday, April 22, 2008


We visited Dr. Mervis in Louisville weekend before last.  It wasn't a terribly positive visit.  She said Louie is not typical of someone with Williams syndrome and that he is lower-functioning than most.  This information makes us flash forward and the future is not usually a place you want to go when you have a child with special needs. Nothing has kept me more grounded in the present, which is a good thing so I hear.  But still, after the meeting, the unknown seems a little more unknown, the dark a little darker, the reality a little bleaker.  I try shaking it off and remembering that I will feel the same way about Louie when he's sixteen as I do now. Even if he's not talking.  Even if he never says a word.  I will still love him then as I do today.  

I've been struggling with a lot of guilt lately.  Guilt that my blog is almost entirely about Louie and special needs parenting.  What about Ace? Because he is perfectly developing, a pure joy and the most contented little fellow around does that mean he doesn't deserve the same thought, the same encouragement and patience?  Yes, he does!  He deserves a million blogs over!  But the fact is that Louie needs more attention and probably always will. I can't imagine what it must be like to have a sibling with special needs.  I am certain it has potential to be a tough place.

I just read somewhere that a child with special needs never has to compete for his parents' attention.  He just automatically gets it.  It's true.  Ace hasn't had near the amount of attention and encouragement Louie has.  Even when Ace reaches a milestone, it somehow comes back around to Louie.  I guess because I can see the way it's supposed to be.  Everything people told me a baby would do, Ace does; a constant reminder that Louie didn't.  But I do enjoy it.  I really do, sometimes, guiltily, I enjoy it more than anything.

Last week Louie's therapist sent us some cell phone video footage of him walking. He won't walk for us at home but in that video he is cruising along like it's nothing!  Looking around, giving high fives, struttin' down the hallway.  That stinker.

Ace started crawling last week, a milestone slightly overshadowed by Louie's Shaking His Bon-Bon video.  How many times did I hiss at Chris while he was on the phone talking to people calling about the walking video, "Hey, hey, Chris, tell them Ace is crawling.", "Pssst...tell them about Ace."? Sounds annoying, huh?  I'm sure it was.

Beyond the special needs aspect of that scenario, there is another element at play; and that is a mother's never-ending pursuit of fairness, whether the child is typical, has special needs, twins, whatever, we want to be fair, equal, 50/50.  Some moms can drive themselves a little nuts over this.  Using Chris' mom as an example, "Now, I got Blake a pair of socks so to make it even I got you this shirt and then I got you another tool so then I had to get Blake this flashlight." You can only imagine how long it takes to open Christmas presents.  A long time.  A very, very long time, bless her equally-loving little heart.

Dr. Mervis commented that she could tell, based on Ace's personality, that he would choose to be a support for Louie, that he would want to be a part of Louie's life. Our pediatrician said that Ace would have the benefit of growing up with a certain sensitivity and compassion.  But while these attributes are important, my greatest hope is that Louie and Ace develop a bond.  Maybe not your typical brother bond, but something, some semblance of a connectedness only felt for each other.  Right now Ace is Louie's shadow.  He follows him around, sometimes just to touch him.  It's sweet but I wish Louie would acknowledge him.  Or even just look at him.

We've only had this diagnosis for a year and a half.  I realize I am probably still grieving.  I am not yet the veteran special needs parent that I know I will be someday.  I know I will adjust and maybe even find something else to write about one day.  But for now, my posts always seem to dig a little into the hurt of it all and then bounce back with some twist that spins it into a light that is more bearable, more humorous or more loving.  I have to do that. Otherwise, I might lose myself in the why, why, why of it all.  

Thursday, April 17, 2008

Echoes, Friends and Bravery

It's been one of those weeks. The echo came back normal. We are relieved for now - until the next one. Louie did fairly well...we made fools of ourselves singing "Old MacDonald", blaring Elmo on the DVD and putting a spinney, flashy light thing in his face the whole time. The endocrinologist was a different story. Louie's veins are tiny which makes drawing blood excruciatingly difficult. His cry said clearly "You are my parents and I can't believe you are letting three nurses hold me down and stick needles into my arms. For crying out loud, how could you?" I have never heard such distress in his voice. I felt sick to my stomach. What a pitiful sight on the way home - in his car seat, his hair all matted with tears, and his Winnie the Pooh "I Pitched a Fit" sticker haphazardly stuck to his shirt.

I told my friend about this string of doctor appointments and she commented that she could never do it and that I was brave. But I'm not. I'm not brave at all. We just deal with what we have to deal with. It's hard to know what to say to someone when you ask how their week went and the person goes on and on about violent blood work episodes and echo cardiogram reports. Seriously, what do you say to that? "Ummm...I'm sorry? That sounds crappy?" And what she said was perfect but the thing is, she has twins. I think she's pretty brave herself. I can't imagine what it must be like for her. Just as she can't imagine what it's like for me. But we try. We try our very best to put ourselves on the other side, to relate, to say the right words at the right times. But when it comes down to it, I think the most important thing friends do for one another is to press their ear against the phone (or in my case, iPhone - sorry I just had to say it. I freaking love that phone!) that is balanced on a shoulder, trying to feed one child while the other runs around the house completely naked because she has learned how to take her clothes (and diaper) off. It's amazing how much time goes by without seeing or sometimes even talking to our friends and it further amazes me that they are still there when you come up for a breath on the other side. I love that. I love knowing they are there and they understand when I might be swimming underwater for a while.

To live in this world, we all have to be a little brave. For those moments we turn a corner and boom, there's that stomach-sinker when we learn we didn't get the job. And we thought it was the perfect job. When our children are sick and one is throwing up on you while the other's diaper leaks all over the place and you're eight months pregnant and you have 20 emails to return and 4 estimates to complete before work tomorrow. There are those bring-you-to-your-knees devastating moments, when we discover we've had a miscarriage or a parent has been diagnosed with Alzheimer's or when you learn your child has Williams syndrome. And all the while, we try to be strong. We have to be. There simply is no other choice. And fortunately we have these friendships, whether new or old, far away or close, blogger friends or best friends, who help us get through it. And remind us that we are brave.

Friday, April 11, 2008

Matters of the Heart

Chris has been out of town for work this week so the conversation around here has been, well, little to none in terms of the real back and forth meaningful type. It was more like this: "Louie, do you want milk?" I ask. "Eeeeeeeeee!" he responds. Ace shrieks in the background. Or there's me trying to be the language modeler "Let's get undressed. Bath time. Shoes, OFF! Socks, OFF! Shirt, OFF! Pants, OFF! Diaper, OFF! Ok, now what do you want?" "Eeeeeeeee!" he responds again. "You you want in! You want INNNNNNNN the tub!" I shout back and plop him INNNNNNN the bath. By the third day I'm so sick of hearing myself that I give in to the if-you-can't-beat-them-join-them type of thinking and my communication dissolves into grunting, babbling, shrieking and crying.

I've also spent the week trying to figure out everything around Louie's ear tube surgery originally scheduled for Monday of next week. It has been documented that there can be complications in kids with Williams syndrome and anesthesia, specifically those with heart issues. When the anesthesia nurse called yesterday, I told her about Williams syndrome and the WS website "for doctors" section which discusses the risks and recommendations. We hung up with the plan that she would give the information to the anesthesiologist and call me back. When she called back today she told me that Louie's cardiologist would not sign off for the surgery until he had an echo cardiogram since he hasn't had one in the past year. So now we're trying to schedule the echo.

I'm glad we are taking this precaution. But of course I'm somewhat shaken. I have already been preparing myself for the echo he is scheduled to have in October of this year; I have almost talked myself into looking forward to it since it could be the one that puts Louie in the clear, as far as heart problems go. If he hasn't developed any issues by then, it is doubtful he will. And I guess the echo we have in the coming weeks could tell us the same wonderful news. But I haven't been preparing for this one. It came seemingly out of nowhere and smacked me in the face with the weight of an incomprehensible world where babies have heart surgeries.

Louie's first and only echo took place a few days following the diagnosis. I knew little about what I was facing, what to expect, what Williams syndrome even was. I took Louie from appointment to appointment to check his heart, kidneys, blood pressure, eyes, ears, all in a daze of confusion, electrifying shock and a strange and unfamiliar relief (to finally have a diagnosis). I didn't know how high the statistic was for heart problems. I didn't even know to be afraid.

The heart scares me sometimes, I suppose because I don't completely understand it; I can't get my mind around the sheer beauty and science and how it all comes together and works to sustain life. There have been times when resting my head on Chris' chest and I hear those rhythmic contractions, ba boom, ba boom, ba boom...I decide I can't listen anymore, the thought becomes too big, the sound too fragile. Like when you're little and trying to understand the concept of forever, and ever and ever and ever and makes you dizzy.

This involuntary muscle that pounds our blood in and out of all the places its supposed to be is also the place we think love comes from; though in reality we all know the heart really has nothing to do with the emotion, the feeling, of love. Love is concocted in our brain. But the heart is much prettier, a much more poetic organ, a much nicer place for love to live. So we conclude, Heart = Love. And I conclude: Love = Heart. Heart = Louie. Louie = Love. Be well, my love, my Louie, my heart.

I'm so relieved Chris is home. For many reasons. Tonight the house is still but the winds are strong. The boys are sleeping hard. It's late and we're about to go to bed. I hear the clocks ticking, a dog barking a few streets over and the occasional creak of the house settling into night. And while I can't hear them, I know there are four hearts under this roof drumming out a beat of love. Ba boom. Ba boom. Ba boom. Goodnight. A good night, indeed.

Thursday, April 10, 2008

This Little Ace of Mine

I'm gonna let him shine, let him shine, let him shine!

Friday, April 4, 2008

These Ankle-Foot Orthosises are Made for Walking

Louie took his first independent steps yesterday. It was in physical therapy and it was all for the mailbox. I can't quit you mailbox! Anyway, the therapist said not only did he take steps, he did it four or five times and went the distance of 20 feet or so. I was only able to get him to take a few steps at home, no 20-foot stretches, but still, he did it! Definitely awkward, he holds his left hand up in the air as though he is still holding someone's hand and with each step you think he's going to fall.

Walking has been one of the big ones for me. One of the delays that has brought the most sadness. If I stop and think about it, I realize this is probably my sadness, not Louie's. He doesn't know what he's missing out on. But I do. The park, the playground at school, outdoor birthday parties with water games. Of course, he can go to all of these but he can't really play, let go, be a kid. Last summer on vacation we were down at the hotel's lovely pool...there were fountains to to play in; children shrieking and splashing through the water, little chubby one-year-olds walking about. And there sat Louie in his tropical fish sun hat and swim diaper at the edge of the pool. It was one of those startling moments that, ironically, sitting 100 yards from the beach I felt as though I were 10,000 feet above sea level. An altitude where the air felt thin and I couldn't catch my breath. We told the waitress to make our food to go and I let the moment get the best of me as I cried behind my sunglasses. It was startling because I thought I was beyond all of that; all of those comparisons to typical kids, all of that grief about the child I thought I was going to have but who turned out to be someone completely different. Now I've come to realize that there will always be those moments where I revisit the hurt. Knock, knock, it's me again. Can you please mend my broken heart?

The parents of children with special needs walk a fine line between realism and hope. I've given up the soccer games, the idea of Louie driving and on many of the expectations parents usually have of their children. Often people say, "Well, you don't know...he might play soccer. You're being so negative!" It does seem that way, doesn't it? And they may be right. He could very well play soccer. But that's what I mean about the paradox between hope and real life. Maybe it's just some defense mechanism triggered when one parents a child with special needs. It seems negative to those on the outside, but to us, it's our suit of armor. And we need it for all the battles we fight as we advocate for our children and of course, the battles we fight within.

Our pediatrician's daughter passed away from complications of Rett syndrome. He recently said that one of the many things he misses about his daughter is how she made them a better family - a little more empathetic, a little more caring and sensitive and a lot more compassionate. I've heard it said that life does indeed break us at times, but when we heal, we heal stronger where the break occurred. I find comfort in that.

When the therapist called yesterday to say "Oh by the way, your son can walk" I had a hard time holding it together. Sitting in my car, in the grocery store parking lot, I fell apart, fell piece by piece into the sweetest joy and it felt so good. While it never doesn't hurt, I believe it is we, the parents, who carry this burden of pain because our expectations won't be fulfilled. But, the kids, while they sometimes have to endure physical pain and health issues, I believe they are happy. Happy to push buttons on the microwave, to spin a wheel, to hear their favorite song. Happy to be alive.

Your joy is your sorrow unmasked...
The deeper that sorrow carves into your being,
the more joy you can contain.
- Kahlil Gibran

Louie, keep on walking. Whatever your reason may be...the mailbox, the vacuum; it doesn't matter. Because you've got parties to attend, playgrounds to play on, slides to go down and fountains to jump in. The miles lie before you and the road is yours to walk. Stand tall, my boy.

Tuesday, April 1, 2008

Save the Lasagna

I drove through a parking lot yesterday with a lasagna on top of my car. A man walks out of a store and waves his arms back and forth above his head while looking straight at me. I think, "What's with this crazy man? Why is he waving like that at me? Is he looking at me? Do I know him? No, no I don't know him." Then, he points and gestures to his own imaginary top of the car with his own imaginary lasagna.

This is not my first absentminded mistake involving vehicles. There's the time I unlocked my car only to proceed to lose my keys. Traffic lines up behind the car waiting for my parking spot. Oh, but before I realize my keys are missing, I can't find my cell phone which turns up conveniently behind the back right tire (as pointed out by the passenger in the car waiting for my spot). Back in the car, seat belt on, no keys. Back out of the car. Open the trunk. Look through bags. Open all four doors. Decide to no longer make eye contact with the people in the waiting car. Find keys. Quickly drive away. Another good one in recent memory is the backing over of the oh so well-researched double stroller. Diaper bag, keys, kids secure in carseats, reverse, crunch. For good measure, I put the car in drive and run over it again. This crazy, blissful, losing-my-mind life.

I say to Louie tonight, "Time for bed. Let's go upstairs." He crawls towards the stairs or more like hops, sort of like a frog, because he has something in his hand. He wants me to put whatever item he's picked out 4 or 5 steps up and when he reaches it, I am supposed to move it up again, out of reach. This is his new thing. I suspect he picked it up in physical therapy when he was learning to climb stairs. The therapist had to provide a toy incentive to get him to continue climbing. I am almost positive that he thinks that's simply how one climbs stairs. Tonight he chooses a small plastic ball. Ace is on my hip. We begin our journey, literally one very slow step at a time. Chris calls. I answer. I move the ball 3 steps up. It rolls down. Note to future self, a ball is not a good option when one needs it to stay put on a wooden step.

Chris (on his commute home with the dialies): So, I just had this moment, this huge reality check.
Me (Phone balanced on one shoulder, Ace blows raspberry in my other ear, ball bounces down one step, I put it up 4 steps): What's that?
Chris: I'm going to be 35 soon which is only 10 years away from 45.
Me (Ace is trying to wiggle out of my arms, move the ball up 4 steps): That's true. Crazy, huh?
Chris: I'm shocked. It just hit me. Maybe I should buy a convertible. Or a new boat? Kidding, kidding...
Me (Realizing he was just chatty and this could go on and on and that he probably doesn't know I'm in the middle of a stair climbing event): Boat? Good idea! Ok, see you in a few. Stairs, balls, babies, bedtime, gotta go!

Sometimes the best conversations we have are by phone. If we happen to catch each other at a time when we're both captive such as driving, waiting, well, mostly driving. Because sadly by the time Chris gets home, we make and eat dinner (we once made a noble attempt at eating together at the table but ended up being lured in to the cozy American tradition of eating by TV-light instead), clean up the kitchen and then crash out with our bodies in this somewhat-sweet-somewhat-strange contortion we get in so we can share the couch. I scratch his head. He tickles my feet. And most every night this is what we do. While the list sits on the desk. And all the plans I had for "after the kids are in bed" are shoved into the corners of my procrastinating mind. The light of the television dances around the room . My boys are sleeping, Idol is on, my lasagna is safe and all is right in the world.