Wednesday, June 25, 2008

SuperBrody has splints!

The first photo of Brody wearing his splints.

They are removeable, plastic, and as Jeremy said, make him look like a superhero!

I'm so inordinately ecstatic about these splints, and I haven't even seen them in person (Brody and Jeremy are awaiting the flight home in the Salt Lake airport). However, you will notice that they are not over his elbows, which means my little man can bend his elbows, which means that he can once again feed himself! After motorcycles, feeding himself is Brody's favorite thing!

Ordinary Miracles

This essay came to me via a Vacterl support network. I do not know who Candice Lee is, but her essay touched me and my life in ways I cannot yet describe. Oh. . . to be ordinary. It is what I wish for Brody, to be ordinary in his extraordinary ways.

Ordinary Miracles
By Candice Lee, copyright 2008

How do you choose the most important day from a lifetime of small miracles? Was it the day I should've died and didn't? The day I stood, the day I walked, despite predictions to the contrary? Graduated from college, married my best friend, or delivered my daughter? Each of these days has lighted my entire life. And yet, the most important day of my life happened in an airport bathroom.

The path to that airport bathroom started three decades before. I was born eight weeks premature in 1971. While it was clear right away that my feet and legs were not quite right, it would be months before my mother received an accurate diagnosis: a rare disorder called sacral agenesis. Despite the normal outward appearance of my back, several vertebrae in my lower spine were missing. The specialists poured out a river of she'll-nevers in front of my mother: she'll never sit, never stand, never walk, she'll never have children. . . have we mentioned she's probably retarded? Fortunately for me, she believed none of it. Instead, she took me home and commenced fighting for my life.

When a series of raging infections ended in the discovery that my bladder did not function, and was not growing with me, the only solution was a rare and radical surgery. At two years old, doctors unhooked my ureters from my bladder and brought them out a small opening they made in my abdomen, called a stoma. From that point, my kidneys would no longer drain into my shriveled bladder, but into a plastic bag on my stomach: a urostomy.

There are many things I could tell you to make the thought of life with a urostomy a little more palatable. That it can feel normal when you can't remember anything else. That technology has made the daily requirements of living with such a thing easier to bear. These things are true, but only partly; acceptance comes and goes from day to day. What is true is that it saved my life. While there was still a long road ahead of me, filled with surgeries and braces and orthopedic interventions of all kinds, my family never again had reason to fear for my life. I arrived at adulthood with stable health, but with visible differences. With one leg slightly shorter than the other, I walked with a limp, my lower legs encased in custom-made plastic braces that slipped inside my shoes. While the urostomy is easily be hidden under anything short of a bikini, it nevertheless required explanation for anyone who became close to me.

The invisible differences, however, were larger.My experiences had left me with two things. The first, a rare jewel of knowledge: certainty that I could take nothing for granted. I could never presume that the gifts many people are born to "health, self-sufficiency, mobility" would always be mine. I came to think of these things as my `ordinary miracles;' each day they belong to me, I cherish. When education, a career, and marriage came my way too, I felt doubly blessed.

But the second thing I was left with was darker: the struggle to accept myself the way I was. I was very different from most people, and a feeling of `otherness,' of alienation, weighed on me. Sometimes it weighed lightly, sometimes heavily, but it was never gone. With so many blessings to count, I couldn't bear to feel sorry for myself over some braces and a urostomy bag, so I polished up the outer-me with a layer of confidence that never quite reached inside. I never shouted "Why ME?!" into the sky from a place of angst or self-pity. But I did whisper it into the dark once in awhile, searching.

Then came the airport bathroom.

For our five-year anniversary, my husband surprised me with a cruise to the Bahamas. We missed a flight on the way, and literally missed the boat. We spent the night in a Florida airport, awaiting the plane that would take us to the ship's first port of call.

Early that morning I went into the ladies' room for a last rest stop before boarding the plane. I passed by a tired-looking young mother who was placing her toddler on a changing table. She peeked at my braces, then at my face. This is not an unusual experience for me - I often draw second glances - so I smiled at her and continued on my way. By the time I exited the stall, the mother had undressed her young son. To my surprise, I saw the mom was changing, not a diaper, but a urostomy bag. I tried to explain our common bond, but it became clear that the boy's mother spoke little English. When I found I lacked the words to reach her in my pidgin Spanish, I finally just gestured at her little boy, and then lifted my shirt to show her the pouch at my waistline.

"Same!" I smiled.

"Oh!" Her hands flew to her mouth, and the emotions I saw play across her face were complex. As she dressed the boy and we returned to the waiting area, we talked in our broken fashion, and she made it plain she had thought the boy's condition serious enough that she hadn't expected a typical life for him. Her eyes traveled over my clothing, my luggage, my husband, and returned to my face. She seemed to find something there that gave her hope. "But you. . ." she said, tears springing to her eyes, "you so . . . pretty!" She was grasping for a different word. The one I supplied in my head was ordinary. She saw in me . . . weary, rumpled, surrounded by the detritus of travel - all those ordinary miracles that become so luminous when you can't take them for granted. She gently touched my cheek, then looked at her son. Was she seeing these miracles for him now?We hugged and parted.

As they walked away, I felt the beginnings of a subtle shift in the weight of that otherness I carried. I had always looked at my differences as accidents; what if, instead of accidental, I was carefully, intentionally crafted? What if it wasn't my differences that were creating my grief, but my stubborn insistence that somehow, it ought to have been otherwise? Why me? A better question might be, why NOT me? My feelings of alienation, my struggle with acceptance, did not dissolve instantly. But each year they've grown lighter. In that brief encounter, the little boy and his mother showed me that the energy I was wasting carrying around heavy feelings could be better used in service to others. While my experiences differed from the mainstream, I still shared a common bond with everyone else on the planet - it was up to me to find meaning in them. In the time since, I've sought out others like myself, and I have made my career out of helping people with disabilities to live better lives. The little boy from the airport would be about eleven years old now.

I hope his life is ordinary.

Tuesday, June 24, 2008

Gratuitous Brody photos

Yes, I am recycling photos from the weekend. I cropped and zoomed. Because mainly I want to focus on the unabashed mischief twinkling in Brody's smile. He knows. Oh yeah, he knows.

Monday, June 23, 2008

Wimbledon, Wimbledon, Wimbledon!

Today is the first day of Wimbledon!!! I love watching tennis - it seems like the older I get, the more I love watching tennis.

So many of my favorite childhood memories were watching Wimbledon with my parents, and my sister. I remember watching Boris Becker win his first title when he was 17, and I was 14. I was on vacation with my parents.

I remember watching the McEnroe - Connors finale because it was on the 4th of July, and two Americans were playing. I remember the year before that, too - when Mac beat Borg.

And now, in the age of the web, I can get live scores on my desktop, my mobile. . . it's glorious. Not the same as being there, but glorious all the same. And one day, I will take Brody there and we will walk on Centre Court and I'll get chills, and think of my mom and my dad, and probably cry, and Brody will probably roll his eyes and think I'm a lame sentimental fool.

I cannot wait.

Brody already enjoys watching tennis. He learned to clap watching the US Open last year - he would clap when the crowd would clap. Now when he wants to watch tennis, he'll look at the TV and say "Ball? Ball?" And I switch on the Tennis Channel. Then we cuddle up together on the couch, or the bed, and we cheer on our favorites.

I have even indoctrinated Jeremy into this ritual, and he doesn't even play tennis. Two weekends from now, we will have strawberries and cream and watch the final, ladies on Saturday, gentlemen on Sunday.

I pick Rafa Nadal and Ana Ivanovic to win.

Sunday, June 22, 2008

Weekend Photos

Who looks more wistful - Jeremy or Brody?

Brody's future of skateboards and scooters is fast approaching.

Is it just me, or does the pig look familiar?

Brody making a chicken sound at White Fence Farm.

Moments later, Jeremy and Brody watching the chickens.

GQ at Johnny Rockets

Enjoying milk and sugar packet sorting at Johnny Rockets.

Brody's favorite things, in order: motorcycle, bus, truck, car.

"Is he handicapped?" No. Are you?

Yesterday Brody and I went for Brody's first trip to Johnny Rockets, the 50's diner.

I was very excited because my mom used to take me out for lunch just the 2 of us when I was little. I still remember Coachlight restaurant, and how we'd order cabbage soup (I thought I was so very mature) and then I'd get grilled cheese, and stuff potato chips into the cheesy meltedness.

Brody was in a booster, because he is so very mature. And obviously, he still has casts on both arms. He was happily playing with the sugar packets, taking them in and out of the holder.

The waiter dropped off our drinks, and then asked me, after looking curiously at Brody, "Is he handicapped?" Just like that. And no, he wasn't some teenager either, which I might have forgiven. He was in his 40's. He may have just come from a correctional facility.

I just stared at him for a few moments, and carefully replied, "No."

But really, where the hell does a complete stranger, who is there to SERVE US, get off asking me a question regarding his medical status. It ruined the whole meal. And yes, the management team at Johnny Rockets will hear about this episode.

I wish I wish I wish I would have replied, No, are you? But I did not. But I will next time.

Thursday, June 19, 2008

Then and Now

The first photos of Brody, in the NICU, after we were finally able to hold him. All 3 pounds of him.

God he was little. Everyone said so at the time, but I didn't think so then.

The photo we sent to every single person we knew.

Resting at home, at last, after spending the first 8 weeks of his life in the NICU.

The first time he was casted he was about 3 months old - November 2006

More then and now. . . .

Then, I didn't tell strangers about Vacterl association. When they would ask, I mean. I didn't want to think about it. I would get sick to my stomach when someone would ask me how he was doing, health wise. Especially about how his kidney was doing. I stayed on Paxil an extra few months because I thought he'd need kidney surgery in May 2007.

Now, I tell people about radial club hands, vacterl association, and Brody's upcoming 8th surgery all the time. I even have a carepage for him to talk about his medical issues.

Then, I worried how Brody would hit all his milestones, walking especially. And talking. I actually worried that he didn't have enough words.

Now, having been shown by Brody -- repeatedly -- that he can figure out every single thing he needs to do all by himself, I no longer worry that he will be hindered in any way. The truly astounding part of this journey is that he has taught himself every thing. Sitting up, scooting, eating, using his hands, adapting with casts, adapting with fixators, standing, cruising, walking, stairs . . . the kid literally one day just looked at the stairs and started crawling up them, the whole flight, without either Jeremy or me helping him.
With external fixators on.
Four pins in each arm.

I always remember when I was pregnant with Brody and in the hospital with preeclampsia, that I got the feeling whenever they'd put the heart rate monitor and movement monitor on my stomach, and I'd sit there anxiously watching his heart rate and feeling him kick, that he was saying "Look at what I can do, see? Look at me? I can do it! I'm going to be okay, mama! Look at what I can do!"

The thing is, when I felt he was telling me that, we didn't know anything about Vacterl association or that Brody had any of the medical issues he has. Hell, I didn't even know whether he was a boy or a girl. I called him Zoe Brody, because Zoe was his girl name.

Tuesday, June 17, 2008

I wish I was here. . .

or here. . .
or here. . .

Monday, June 16, 2008

Just when I thought I was out. . . or, brought low by Thumbkin

I suppose I brought it on myself. I asked my group of women friends for ideas on other finger plays. Brody adores Itsy Bitsy spider, and Bear Hunt. I asked for others.

And in walked Thumbkin.

Thumbkin is a little ditty in which you sing, to Frere Jacques, about all five fingers coming out and talking to each other and then going away again. The song has silly names for all FIVE fingers, and the title character is, as you cna guess, named Thumbkin. Because he is (they are?) thumb. Then Pointy, Tall Man, Ring Boy, and Pinkie.

Where is Thumbkin, where is thumbkin?

(one thumb comes out of hiding) Here I am!
(other thumb comes out of hiding) Here I am!
(one thumb to another) How are you today sir?
(other thumb to first) Very well indeed sir!
(sing) run away, run away.

I know this is a stupid, meaningless song.

And yet, it made me cry. Because Brody doesn't have fucking thumbs.

Just when I thought I had accepted it. It's like a slap in the face. Because the thing with the song is that the little kid you're performing for will, eventually, mimic your hand gestures. But if I sing it to Brody, he will know he doesn't have thumbs.

I know he will know he didn't have thumbs. And I know that he will, in a matter of a few months, have thumbs. But then the question is - which other finger from the song will he not have? Pointer is going to become Thumbkin, and then Tall Man will be in Pointer's position. Which do I sing about to Brody?

It just brought all the injustice of this back to me. Growing up is hard enough, if you remember. Remember all the shit that happens to you in grade school, middle school and high school? And here is this fucking song that reminds me what Brody will have to operate as an 8 fingered kid in a 10 fingered world. Everything counts to 10 in school. You use your fingers to do that.

And I know his life wil not be shattered because he is missing 2 fingers. I know that. He already does everything without thumbs and with only 8 fingers. But goddamnit, he's going to have to think about it, and deal with it, and at some point, he will have his own Thumbkin moment (or moments) and I don't want my beautiful, breathtakingly witty, courageous boy to have one second of misery and yet I can see it coming I can see it already happening, and I won't know what to say to him or how to comfort him or make it better because I can't make him ever have 10 fingers, he will never have 10 fingers, and even though if I lost 2 fingers right now it would be hard but not crushing, I didn't have to grow up like that in the cruel world of children in school. He will be all alone in that school yard, or class room, no matter what we do for him before.

Fucking Thumbkin just brought it all back up to the surface. It's not enough for his skull to be fused, his throat to be narrow, his kidney to be absent, his having to endure seven surgeries before he's 22 months old, live in casts for over half his life at this point, miss out on swimming and baths and climbing and sand castles and walking earlier. . . but the previews have arrived for me.

And then I am at this moment even angrier at myself. Because Brody does not need or want pity. Still, I think some days I can feel my heart breaking and I can't stop it and I can't get it together to figure out how to make it better for him.

Oh, and yes, I did perform Thumbkin for Brody. Only I just do it with my 4 fingers, so Brody won't ever think that he is less than. But then I think I'm patronizing (matronizing?) him. Back to feeling inadequate. Maybe I will be the one to make him feel less than.

He asks for Thumbkin all the time now. He looks at me and puts his fingers together and says "More? More?" in that adorable new person-pitched voice he has.

This is the thing. I noticed tonight he never flinches. Jeremy was faking throwing a ball right in front of Brody's eyes tonight (to make him laugh) and Brody did not flinch. Bright eyes wide open and smiling. But one day he will learn to flinch.

And I do not want him to ever feel that fear, that isolation, that loneliness. And I am completely powerless to prevent it.

Wednesday, June 11, 2008

Photos from Shriner's in Salt Lake

Brody, on the day we left, moments before we actually left. Wearing my sunglasses, and sick of waiting for me to get the suitcase, diaper bag, return all the toys, return all the movies, give away the balloons, unfold the stroller, return the cart. . . .
View of the mountains in Utah from the hospital grounds. Not bad, eh?

In the play area, Brody's favorite moments were spent in the storage for the balls. He would walk back and forth, and back and forth, over the balls. He never would have left that box but for my insistence that we eat something.

Post surgery. The shower cap actually has shampoo and conditioner in it, and there is no rinse required. First - what a great invention! Second - his hair wasn't that dirty, but just look at how cute he is wearing it!

Tuesday, June 10, 2008

Favorite photos

Baby got back. May 2007

Spring 2007
Easter 2007

September 1, 2007 - 1st birthday
The day he learned to use a spoon. With no thumbs, hands at 90 degrees, and missing radius bones in forearm. Try eating yogurt with a spoon but don't use your thumb. See how happy you are when you manage to finally eat the yogurt. I don't know who was more proud at this moment - Brody or me. Pretty sure me, but my sister thinks Brody.

Monday, June 9, 2008

I will never stop being amazed at how cute my son is. Seriously. He even looks good in orange. How many people can say that?!?!

Thursday, June 5, 2008

Two week post surgical update

I thought I'd send you an update on how Brody is doing. We're coming up on 2 weeks post surgery.

New date: June 25 - Jeremy and Brody travel to Salt Lake for a cast change. Actually, a cast to splints change. Not too excited yet because the splints still have to be on 24/7. However, once the splints are on for a month, then they only have to be on at night. And no, I don't know for how long that goes on. I wish someone would give me a pad or notebook and I could write down all the questions I have. Oh wait, someone did. More than one person did. I just choose not to use them. Excellent thinking, that.

Thursday, August 26 - this is the day (currently) that Brody is scheduled to have the thumb pollicization surgery (if you think that word is hard to pronounce, try spelling it). What is thumb pollicization? Click here - or here:

I am told by reliable sources that mercury is in retrograde, and therefore that it is possible that dates and plans will change often in the next 4-5 weeks. But I'm pretty sure this is when the left thumb surgery (his 7th surgery) will occur.

Brody is doing well, all things considered. The poor little man is still soldiering on in the world of walking. I now know what "baby steps" means. So much of walking involves using your hands and arms to pull up. Before he got the fixators, he was on his way. Then the fixators slowed him down. Then just when he was starting to take many steps, he had the 2nd fixator surgery and was very ill. Then 3 weeks later, he has another 5 hour surgery and wakes up with heavy casts - which weigh almost two pounds. That's around 10% of his body weight.

However, when I picked him up from daycare yesterday, they told me he took 10 steps, by himself. His teacher said the whole room stopped and watched and cheered him on. Brody did a repeat performance last night, walking to his toy box in the living room, Jeremy and I looking at each other, then at Brody, then at each other again, surprised grins on our faces.

So while Brody's walking is improving ever steadily, his eating is reverting slightly backward. He's hitting the bottle hard. I think he is incredibly frustrated that he cannot feed himself (his casts are over his elbows, and the elbows do not bend and we cannot change the position of the casts because that would cut off blood supply to his hand). Brody did not like anyone feeding him before the casts. With the casts, he will deal with it for a few bites, but then refuses to eat more. So he is drinking a lot of milk. I think it gives him comfort.

Just imagine if you woke up, and suddenly you had hard casts over your arms and hands, and could no longer bend your elbow (and had a rod drilled through your ulna). And you had no idea why. I'd be angry, depressed, confused, terrified. Not Brody - he is frustrated, definitely. But still mostly his sweet self. He doesn't even know the casts are temporary. And yet still manages to have fun - he discovered last night that hitting his casts on our glass coffee table makes even more noise than hitting his fixators on our glass coffee table.

He also likes to "clap" - meaning, he likes the noise that hitting his casts together makes. He claps when we watch the French Open on t.v. - he applauds when the audience does. Sometimes if he does it too hard, he says "owie" but mostly he is off the pain meds. If only I could go on them!
Brody has straight wrists! The tendon transfer, or relocation, was a success. He also has a rod screwed into his radius bone from his wrist to his elbow to help stabilize everything. Casts til June 24, then splints.

Three: the number of patients at Shriner's Salt Lake the Memorial day weekend.

The deserted hotel in the movie The Shining: What the hospital felt like during the deserted weekend.

3: the number of people who swore to me that Brody does already have thumbs. Of course, 2 of these folks were children, but not little children. They couldn't believe they had been playing with Brody, and had never noticed his absent thumbs.

Perla (with a rolled "r"): The adorable little girl, age 10, who played with us over the weekend. Perla was there for surgery on her foot. I think she had a club foot, based on her mom's gestures. She spoke as much english as I speak spanish, which is to say, none. And whenever her mom would tell Perla (I am assuming) that I don't understand spanish, Perla would then just repeat whatever she had just said, but more slowly, as if that would help. Then she'd look at me like I was crazy for not understanding her. She was quite charming. Perla and her mom and Brody and I were essentially on a 3 day long double date and I am so thankful for that. It's amazing how much you can understand another person through essentially charades. Brody was Perla's little doll - and she and her mom made him belly laugh so hard that he couldn't breathe. I'm pretty sure Brody understood most everything Perla and her mom said to him.

Blue & purple: Brody's cast colors. At Shriner's, it is quite gauche to have only one cast color. It is a rite of passage when a Shriner's kid picks his or her own cast colors. There are about 10 colors to choose from. I picked red and blue for Brody, to continue the Superbrody theme. They were out of red however. So purple, for royalty, was chosen.

David & Trevor: The 2 teenagers staying at the hospital who adopted Brody as their little pal, amazed at how cute Brody is, and letting him wear their baseball caps and play with their cell phones.

Two: Number of words Brody said for 36 hours after surgery, which were "No!" and "Owie!"

My inspired parenting moment: Brody says please, in sign language (rubbing his side) when he really really wants something. So when he refused to take his pain meds, I said "Please?" and signed him "please". It worked twice.

Favorite moment: Brody and I on the swing in the playground. I held him while we swung. He promptly fell asleep on my shoulder. Then later in the afternoon, we returned. And this time we just swung for about 30 minutes. It was quiet, and we could hear the birds singing. Then Brody started barking, and a discussion of various animal sounds ensued.

Beso: this is "kiss" in spanish, which I learned from Perla. Brody is at the stage where he likes to kiss everyone. Which, for you out of staters, makes this an exceptional time to visit Brody. One day he kissed me 7 times in a row. And I didn't even have to ask.

Moment I started to cry: Saying goodbye to Perla's mom. Whose name I never knew. Perla was in surgery, and Perla's mom and I hugged goodbye in the hallway, and she kissed my cheek. I am astounded at the connection I had with this woman, whose language I did not speak. But we both knew what it feels like to see our child suffer, worry during surgery, and take pride in their triumphs.

B: Ball? (pointing at ceiling)
Me: No, that's a fan
B: Ball!
Me: No,that's a FAN. Can you say FAN?
Brody: Ball!(pointing & smiling)

Then I noticed that he was pointing to the ball, at the end of the string on the fan. Brody only sees the good in life. A lesson for me.

Wednesday, June 4, 2008

The highest compliment

I had a very very bad day the other day. And then I got this from my friend Stacy. Stacy who is a stay at home mom, who is an incredible woman, friend and mom herself, who has taught me so much about parenting and life. And short of memorizing it to myself, I am posting it here.

I am really glad we got together this weekend. Brody is so lucky to have you both as parents (and I know you are thinking NO! WE'RE the lucky ones--and of course you are). He is such an adorable and loveable boy. So of course loving him and enjoying him comes very easily. But it is still extremely stressful to basically be in this revolving door of hospital visits, follow-up appts., surgeries, etc., etc. I know you are one to just say that you do it because you have to, and that there is nothing heroic about that. What is special about what kind of parent you are is that you haven't let the stress and worry interfere with what kind of mother you are to Brody. You are a fun (and funny), relaxed mommy and your son is totally in love with you. Of course you will always tend to his medical needs and worry every time he goes under general anesthesia, and desperately wish you could take away the pain he endures with every procedure, the frustration he feels dealing with those cumbersome casts, and so on. You are meeting all of his needs, not the least of which is his need for a mother who is not stiff and distracted with worry and fear. I think every parent wonders at times if we are doing enough for our kids or if we are doing it right. Assuming you are one of these parents, I want you to know you are an awesome mom! Stacy