BEREAVED BABYHOOD

"Has he had much peer interaction?"

I'm sitting in a meeting with Kade's speech therapist and his wide-eyed, concerned teacher. She notes that he may be a year behind, she wishes she had more time with him, he's just not ready for kindergarten. She leans forward, trying to be empathetic and asks absurd questions like, "Can he form complete sentences?" At this point, there's a lump in my throat the size of Texas and tears are stinging, forcing themselves forward when I strain my eyes. I try focusing on the clay paperclip bowl on the desk, likely made by a healthy child who was born ready for kindergarten. 

I feel like Kade was robbed. I want to shake them and show them the last four years of his life. I want to walk them through the agony of waiting; for someone to listen, for answers, for a surgery to be over, for more answers. I want them to feel the desperation of losing a job, too exhausted to get up for work, spending the night with a coughing, gagging toddler. I want them to spend months toting an oxygen tank from place to place. They should try to hold their baby down while someone forces tubes into their noses and throats. Maybe if they left their lives behind and drove away, if they traded their comfort for a chance, they might not stare at me like this. But then again, I wouldn't wish it on the most aggressive of my enemies.

I promise, I did all that I could.

I wonder if they know that kids with CHD are more likely to have a learning disability. 

They don't know that while most kids Kade's age were starting their first day of preschool, Kade was on his way to Washington. Kade was eating at Salvation Army every night and slowly tapering off his asthma medications. They don't know that while Kade was in daycare, he missed a lot of days. Viruses shared by friends put him in the hospital and often, he just slept through it. It exhausted him, that peer interaction. 

I feel that he was robbed of his babyhood. As an infant, his heart was failing; unbeknownst to us or anyone. At nine months, he was surviving and healing from a very successful but traumatic open-heart surgery. By age two, the asthma started and months on end were spent in and out of that haze of hospital rooms and wearing face masks to the grocery store. 

Two years ago, I wrote that, "The sad reality is that your children become exactly who you taught them to be. And not just with interactions at home; it's the movies you let them watch, the the music you let them listen to, where they spend their time and who with, the way you talk about your peers in their presence... They're watching and they're sponges and they're copy cats. Be mindful of your words but even more so of your actions..." 

This is still true, as a good friend reminded me today. But, the sad reality is also that Kade was tossed into a very adult world very early on. He traded his play dates for asthma clinics. When a doctor comes in to deliver the news, your baby is there, picking up on the anxiety. When a nurse rushes in to start force-flow because O2 sats are dropping rapidly, your baby is there to hear some very scary words and he can feel the stress and urgency. 

I'm afraid Kade is still being robbed. He's behind, yes; understandably so. But they look down at him and see what they believe to be an under-educated preschooler, not grasping the concepts, not interacting with his peers and not responding to their childish questions. They assume he's non-verbal, not knowing that he comes home speaking volumes. He knows every word to the Pizza Song they've taught him and he remembers the names of each of his classmates. Abigail is his favorite. 

Because Kade is absorbing the songs and rhymes, I can only assume he's absorbing this too. He plays on the colorful alphabet rug while they tell me this: He's not ready. He's nonverbal. He's not interacting. He's lashing out. They take him to the special-education wing to use the bathroom, a fact that makes my blood boil. They separate him from his peers and tell him, you are different. You go here. Trying to squeeze a square peg into a round hole. 

I believe in self-fulfilling prophecy. If you sit a child down and repeat again and again that he's not ready, not interacting, that he's shy or doesn't know his colors... then he's not, he is and he doesn't. 

Kade is growing up, fast. His legs are getting long and lean, his feet are big; baby feet no more. Suddenly, his babyhood is over. He's moved on to boyhood and I'm realizing that we aren't ready. I guess we felt that we would move through all of this and have our baby at the end. Here he is: he survived and now you can start over. At least I felt that we would move on and be ready; for preschool, the alphabet, kindergarten. But that's just not so. 

So, we try to move at his pace. We play hours of candyland and remind him that red and orange are different; green and blue are not the same. We read books again and again, can you help us find the letter A? What about J? We remind him that the word Butter does not have a y in the middle. Buh-TER! And he marches about the house singing, "Buh-TER!!" This is all we can do for now. We work and we love. We push and encourage, we have high expectations, we tell him again and again, "You can Kade. You can learn anything." 

Last night at dinner, Kade looked at us and grinned. He said, "I just love you Mom and Dad! You're my best guys!" I winked at his Daddy. Non-verbal, my ass.

Aurora

Our first night in Seattle, we drove up and down the hills with eyes bleak- exhaustion gripping us by the bridge of our noses and nerves shot with the stress of travel. It was maybe 2am and we were searching frantically for a hotel, a motel, a somewhere that had a room, accepted pets and would take my apparently high maintenance VISA card.

It's true- we didn't plan ahead.

Up and down what I think was the university village, all the way to Lynnwood and back, through so many freeways and byways that our heads were spinning. We had no sense of direction- which direction are we facing? Is this west? Is that water or land? We lost ourselves there. We were angry and maybe scared too. Ian exclaimed we would sleep in the car. I peeked back at Kade, already snoozing,and let out a sob. But he deserves a bed.

 Finally a hotel will take us. They have a pet room for my grumpy dog and a covered parking garage.

Running back to the car to tell Ian, a bright flash goes off in a second story room followed by a POP! Ian stares at me and says bluntly, "Great. Someone just fucking offed themselves." I rolled my eyes at him because that's just the mood I was in. Those rolling eyes turned wide as we were surrounded by SWAT vehicles. We tried to drive off and were greeted by a squad car with two officers asking questions. "Did you guys hear that?" they asked, just as shocked as we were and maybe amused. That was your SWAT team. We sort of giggled, but were frightened. Would they pull us out, search our car? Memories flooded of Ian being thrown to the ground as a teenager, mistaken as a crime suspect while walking home.

They casually turned up the radio and nodded, "You're right! Cool, man. Have a good night!"

It was apparent we weren't in Utah anymore. We drove away in a fit of giggles, the stress rolling from our backs with the sweat.

We returned to the hotel, ready for sleep and a hot shower. The awkward boy at the front desk is playing electronic dance music and remarks that this is his last night, an exciting one at that! "Well, the pet rooms are on the second floor. And the second floor is kind of... police zone right now. So I'll move you to the third! And the parking garage is full. You'll have to park in the alley behind it."

I guess that should have been a red flag. We were just relieved to have a bed to heave into.

So we slept there, with a full-blown SWAT drug raid happening right below us. When we woke, we peeked out at an industrial part of town. From the thin window, homeless wandered the parking lot of Sams Club, cheap motels boasted super low nightly rates and bars littered the small spaces between Used Car dealerships and Office Depot. The night before, in the dark, it was hard to tell where we were; what kind of neighborhood had we landed in?

Aurora.

I later told a friend that we stayed on Aurora and she gasped, "What in the living hell were you doing in that part of Seattle? Like, holy shit man."

I guess we still had a lot to learn.

Good Stuff, Maynard.

I often find myself thinking of this little space and what exactly to do with it. What message am I trying to portray here? Sometimes my head aches trying to think up grand ideas, new recipes, interesting new topics. Most days, I fall short and say forget it.

Winter is hard on me.

There are bedtime baths that lead to the massaging of wrinkled baby feet. Dinner conversations go on with Kade center stage, new ideas spitting from his mouth like little flurries of snow. Hair sprouts on Ezra's head, strawberry blonde tufts. Books are repeated, memorized. Train tracks are built, torn down, built again. Jenga games go on through nap time, in the kitchen so the crash! of wood won't disturb the finally sleeping baby. Promotions are being earned. Friends are warm and funny. Surprise packages, letters, cards find a cheerful home in my mailbox; a sweet reminder that I'm not the only one who has lived here and felt this.

This being that despite the good stuff, I feel sort of like a glob of tar.

Seasonal depression is no joke. It's a sticky, black tar bubbling in my brain. It's hot on my skin, it fogs my peripheral and it pulls me downwards towards the floor. My limbs feel heavy, my feet too far away, my saliva sticking my tongue to the roof of my mouth. A friend recently came over for dinner and stated that his writing voice sounded nothing like his speaking voice; it was more eloquent, more put together and wise. I nodded and rubbed at my own shoulder. Of course I understood.

On the phone with my mom, she issues the question everyone has: How are you handling the rain? I twist my hair a bit, glare around the house and reply, "I'm fine." I'm just bored. I'm stuck inside. I need to meet more people. If we had a car, we'd be good.

This isn't always. There are mornings with pancakes and coffee, afternoons of Pez dispensing and rough housing. Long walks are sacred when the sun comes out; we gulp up the air and stand directly in the sun, closing our eyes.

But there are also stiff, groggy mornings. When the babies cry is like a vibrating buzz in my brain and Kade's requests seem complicated and infuriating. The pile of dishes in the sink diminishes and rebuilds faster than I can keep up. The laundry piles high and it can all feel very suffocating.

I'm grateful for friends.
I'm learning that things don't have to be perfect to be written about. My favorite writers scarcely drone on about sunshine and lollipops. That can all seem pretty plastic.
I'm grateful for my babies.
I'm learning that they love me, no matter how forgetful and groggy.

I hope you all had a very merry Christmas and have an exciting new year celebration.
Hopefully, but not promising, you will see more stories soon;
plenty of them sunny but many of them rainy.

Shake It Off

Kade started asking about money. He started asking if we were out of money, when we should pay rent and whether he should (no joke) go to work to help out. My four year old is concerned about our finances. We've assured him, profusely, that he has nothing to worry about. We have plenty of money Kade, we're taken care of. You're taken care of. We've done our best to discuss bills privately, out of his ear shot. But still, it's become a normal conversation to have with him. Going for a walk the other day he panicked, "Mama did we forget to pay rent? We need to go pay rent Mama. Hurry." The rent was easily paid weeks ago but still, he stressed. Then, while taking a bath one night, he responded to Ezra's exuberant splashes by sternly stating, "Stop it Ezra. This is no time for fun."

This doesn't portray the fun-loving, giggling and sweet baby that belongs to us. The tantrums were getting out of hand and it became very clear that he needed to get away; out of the house, with kids his own age, doing kid stuff. Since we moved to Washington over a year ago, he has been with us. Glued to our sides through everything; the stresses of moving to a new place, a new job, being away from family, five homes in 12 months. He was always with one parent of the other, being brave and especially patient. 

Now it's time to relax, to go be a kid, to love learning and playing and forget the rest. 

This wasn't easy for me; letting Kade slip snugly into his own, very independent skin, squeezing him one last time before guiding him to the hands of a stranger on a school bus. We talked about this for weeks and I was sure we had prepared him the best we could. But there was still that moment, at the top of the stairs: he looked back and realized that we meant by himself, by himself. I could feel the uncertainty radiating from his skin. I gave him a smile and a nod and he was buckled up; my baby, off into the world.

At home, I was a very happy and very nervous wreck. My house felt eerie. It felt quiet and hollow. I kept looking at the clock and thinking about what he might be doing right then. After spooning globs of pears and oatmeal towards Ezra, I glanced at the clock. To my horror, it was only 8:15, meaning he was still on the bus. He wasn't even there yet.

To be honest, I slept most of the time he was gone. Ezra was taking advantage of having the bedroom to himself, took a long nap and I followed suit. When I woke up, I was ready to get my baby off that bus.

Finally, there he was, at the top of those stairs. He had a somber, worried look on his face, maybe wondering if I'd abandoned him or maybe just tired. When he saw me, he lit. I squeezed him and breathed in his little neck. He told me excitedly that school was his "favorite day ever." He spent the afternoon telling us about his teacher, his new friends and how he learned a new song: Walking Down The Hallway. I exhaled a chest full of not-knowing and worry and inhaled his beaming sunshine.

Today was easier. He woke up thrilled to get back on that bus and this time, he grinned all the way up the stairs and rushed to his seat. When he got home, he asked if I missed him and squeezed my hand like he knows this is harder on me than him. He requested Taylor Swift (his favorite right now) and wanted me to rock him, like when he was a baby. Half way through Shake it off, he was sleeping soundly in the crook of my arm. For a moment, he was an infant again, rubbing my fingers. I wanted him to stay just like this, to be a baby again, and to grow up. All at once.

In the bath, he sang The Days of the Week to the chime of The Adam's Family jingle and tried to tell me, through a fit of laughter, about his teacher playing "a stomping game." Before bed he told me he wants to be, "a bike rider, a firefighter and a superman drummer." And he laughed. Oh boy did he laugh... fits of giggling erupting from deep inside his belly, just the way they should when you're a kid.

I can tell this will be good. Hard on my Mama heart, but soothing for his Kade soul.

Go on baby, Shake it off, shake it off.

Homesick at Home

We've lived here for seven months without hanging pictures on the walls.

Anyone who knows me, or has been in a previous home of mine, could tell you that this is just plain crazy talk. I guess the events of the last year leave me feeling "half-packed," even in our own home. From living in a motel, to being in a very hostile roommate situation- I suppose we've got ourselves wound in an uncomfortable knot. The fight or flight instinct is still stuck in high gear.

I didn't realize how this last year of travel had really affected me until one afternoon in summer, when I got new neighbors across the hall. I was sitting on the couch when I heard them right outside our door. I heard them back up to our door, likely moving a piece of furniture. They touched our door. And I had a panic attack.

I tried to come up with escape routes from our third floor home. My brain, unreasonably thought, they can get in and you can't get out. I expected them to knock and then open. I expected them to bang and then yell. I couldn't breathe or move. The rest of the day I was exhausted- sore from being tense, head aching from holding my breath.

The truth is, we had a roommate who was sneaky. We plugged in the webcam and caught him coming in our room while we were away. We knew he was taking things. He came home at crazy hours, spent our rent money on alcohol, refused to let us turn on the heat in January. On top of this, he was a veteran with post-traumatic stress; an absolute loose cannon. I often laid awake listening to him rummage about the house. He would go in our bathroom, he would walk by our door. It was scary. One day, he demanded extra money on top of our rent. He had spent our rent money on God-knows and was in a bind and acting very unstable. We packed the car in the dead of night. We ate breakfast at Shari's and came up with a plan. We never went back.

So, maybe I have a little post-traumatic stress of my own.

You could say we were irresponsible. I would agree with you. But my baby needed to be healthy and I was willing to do whatever I had to. If we had to eat at Salvation Army every night, so be it. I watched Kade gulp up clean, ocean air. I watched him run without growing tired. I watched the treatments lessen and then disappear completely- the O2 sats rising and then staying.

It was worth it.

Now, seven months later, we have a place of our own, Kade is healthy and Ezra is here. I was so excited for this; I thought I would decorate and get settled and be comfortable. Instead, I've been "half-packed" for seven months. I've been slow to get pictures on the walls, I've been avoiding making friends, I've been agitated and waiting. The closet is piled with cardboard boxes, waiting.

And now, I'm tired. I'm tired of being stressed for no reason, tired of thinking, "what's the point?" I'm tired of living half-way between here and somewhere else.

I was browsing through pictures yesterday and found some of my apartment in Utah. The abundance of photos on the walls, fresh flowers on the table, colorful rugs, candles burning... it left me feeling sad and homesick. I used to buy myself flowers, "nest" every Saturday, bake constantly. My home smelled like banana bread, felt like granny squares, tasted like coffee. Now, it's empty. The walls are huge and besides Kade's haphazardly hung art projects, they're also bare. I told Ian last weekend, "I feel like we live in a hospital."

So, we printed pictures. I ordered a candle. I made plans for shelving and rugs and baked two loaves of bread for good measure.

We might not be at this apartment long- but it's okay now to accumulate things. It's okay now to buy frames, vases, furniture. Because even if we rent a house next, we can take it with us.

That's a new feelings- one I'm trying to get used to. It's time to get comfortable and confident.

Kade isn't the only one who can breathe a little easier; we're home now.

1in100; Our Relationship With CHD

Kade was six months old when we finally heard his diagnosis. Although, his cardiologist didn't say, "He has Congenital Heart Disease." She told us, quite simply, that he had holes in his heart.

I knew the names of them before she spoke them because I cheated during the echo-cardiogram. I watched the tech type in the letters V S D with her gloved middle finger and later, A S D. Jabby little pokes, spelling out Kade's future. When we got back to the waiting room, I googled it. I had already read the definition, symptoms, treatment and all sorts of scary statistics.

He's one in one-hundred.

We fought hard for this and the news washed over me, a wave of relief. We finally had an answer. And it wasn't that I was " new and over-protective." It makes my insides twist to think of what would have inevitably happened to Kade if we had quit fighting.

So, there was the digoxin. There was the lasix, making him wet through his bed every night. There was panic bubbling in my chest because I could tell they weren't working. He was sweating, profusely. He was sleeping too long.

And that term kept coming up in conversation- the one I would see on every medical record he has- the one that makes me cringe and ball up my fists: Failure To Thrive. 

At nine months old, there was the surgery. We held it together until I put him in the arms of the surgeon. It was like a movie- swinging doors with little circle windows. He was crying and reaching towards us as they walked away with our baby. I lost it in the cafeteria, sobbing to my family, "It's not fair. He doesn't understand."


 Then there was the recovery. The moment I saw him, he looked better somehow. Even with all of those tubes, wires and bandages, his color was improved. His skin was finally getting oxygen. And the days that followed were remarkable. Kade improved more each day and was home within the week. The check-ups went from every month, to three, to six.

"A small residual leak," says the Doc, "But nothing to be worried about right now. His patch is intact."

So, now what?

We are the lucky ones. Congenital Heart Disease is a bully and a killer. It takes more children a year than every childhood cancer combined. It is the leading cause of death in infants. 32,000 children in the U.S. are diagnosed every year. It steals vacations, first days of school, Christmases, graduations and birthdays.

I try my best to connect with other CHD moms. I'm active in CHD groups, I follow a lot of stories, I offer up my support the best I can. I'm told a lot that Kade is a beacon of hope for them and that makes me very proud of my warrior. At the same time though, I weep for these moms. Kade will likely lead a very normal life. Considering the severity of heart defects, Kade's was one they have success in mending. He probably won't ever be able to play sports but he will live. Others aren't so lucky and multiple defects leave them in a scary place, literally clinging for life.

Can I really relate to them? It's hard to find where we stand in the CHD community. Because so far, we're done with surgeries. We're off the medication.

Even though we're likely done, I worry. When Kade is on the playground and is hit in the chest with a ball, I gulp up air and go into a tizzy. I worry constantly about his chest wires snapping or that his ASD's aren't closing. Some of my worry is warranted, a lot of it is unnecessary. I guess this is where we relate with the CHD community- even after the recovery, there is the worry. I think every Heart Parent knows that worry.

But through the worry, there is the hope. Heart defects are becoming more treatable. Our kids are fighters- unbelievably resilient and so incredibly brave. We have each other- a tight knit group that can lean on each other for support, shoulders for crying, coffee runs and late night texts. And, we have you; our family, friends, acquaintances. With your help, we can keep fighting back against CHD.

If you would like to know more about spreading CHD awareness, please click: http://www.chdinfo.com/howtohelp.php

Do you have a heart hero in your life? Request a hero cape for them, here: http://heartheroes.org/heart-hero-capes

If you would like to donate to the Children's Heart Foundation, click here: http://www.childrensheartfoundation.org/donate-now

I'm controlling.

The title of this blog post is simple, straight forward, to the point. I did that on purpose because what I'm about to write about is not simple. It's complicated and frustrating. Complicated is a good word for describing my life. I once had a friend tell me, "It's complicated? Of course it is. It always is with you." That's because I'm a super human. Super Sensitive Jessica to the rescue!  I attach a feeling to everything and sometimes, that includes my kids and whatever they have their hands on. I like to have things done a certain way and that stifles creativity, learning and even nurturing.

I know, I know. That escalated quickly.

Let me set a scene for you: My kitchen table, in a rain storm; markers, construction paper and scissors are scattered and Kade is banging his hands on the table and growling (yes growling) at me. This week we're learning about the letter D. I planned a craft for Kade to make a dinosaur in the shape of the letter D and in planning, had an idea of what it should look like. It should have spikes on the top and feet on the bottom and a smiling face and it will look like a dinosaur because D is for dinosaur.

Kade disagreed. He wanted the spikes in the middle, the feet in one group in the corner and the head layered over top of the spikes. I kept pulling the paper away from him and showing him the right way to do it. I was getting frustrated because I had this grand idea of how adorable this project would look and he was ruining it. It hurt my feelings. As if my feelings should be at all tangled in a piece of wrinkled construction paper and a sticky smear of paste. By the end of the project, we were both grumpy. Mean Mom won the battle and Kade caved and did it my way. Afterwards, I was even more emotional (because that's what I do). I stared at the D dinosaur on the dining room wall and wanted to cry. The truth is, I would love it more if he had done it his way. Hind sight is, after all, 20/20.

This is where Ian comes in, normally. I know he would put his hand on my shoulder and say, "Babe, it's his project." It's hard to have him working late- not here to remind me to chill the heck out and just let things BE. We're a good balance in this way.

Somewhere deep beneath my skin is an anxious, obsessive little gene that insists on things being a certain way. I need my towels tri-folded and I organize Kade's room meticulously.

I remember being a kid and being furious that I didn't get to set up my own room. When we moved to a new house, my mom did that for me. This is fine; she was trying to help. But now I'm doing the same and somehow not understanding why Kade knocks things off the dresser or dumps out toy containers. He wants things in his space to be done his way and of course he does. He's my child.

It's hard to stretch myself from this comfort zone. It's hard for me when a project goes array, things are out of place, Ian doesn't completely empty the sink. It makes my skin crawl and my blood boil.

But of course, it's complicated.

Because on the other end, I have always been one to let Kade experience things. I let him soak himself in puddles, wear his underwear all day, get muddy, paint his face, whatever he wants as long as he's learning, stretching, growing, experiencing.

What, exactly, is the difference here? I'm still trying to figure that out. In an attempt stretch my comfortable little pocket, there will be more open-ended projects. It's not going to be perfect. I'm sure there will be plenty more Mean Mom days. But we have to start somewhere because Mean Mom is bully and I'm tired of her controlling crap.

Today, we received a package from IKEA. It came with all sorts of fun packaging cardboard and Kade saw it and said "Oh mama, I think we should paint it!" I pulled out everything I could think of- paint, crayons, markers, glue, scissors. And I let him at it. I haven't walked back in there yet because he's in his zone and thoroughly enjoying a project without my help. This is just another lesson of letting him be him.

We'll keep practicing and hopefully, he can be patient with me.
Thanks for being my gunieu pig, little bug. I'm sure your baby brother appreciates it.