My baby sister was born with Transposition of the Great Vessels. She lived 7 days.

I was 4 years old; I would turn 5 years old in a month.

My first memory:

I was walking around the back of our house to our cement patio with my grandmother. I was a kindergartener. But my mom missed it. She had missed my first day of school. She missed my blue dress, my messenger bag, and my blue Mary Janes. My dad missed it too, but I wasn’t so concerned about that. They were there, my mom and dad and my grandpa. They were sitting in metal green patio chairs. My mom was in the glider rocker, from the same green metal patio set, rocking, her glazed eyes staring forward. Where Amy, my 3 year old sister, was I don’t remember; probably trailing behind me, as she had a habit of doing.

And there she was, my mom. Suddenly in front of me, her eyes locked with mine. She was kneeling, her permed brown hair framing her face. Her oversized, early 1980’s glasses making her blue eyes, that were full of tears, appear even larger than they were.

And in the next moment, we were in the bathroom, my mom and I. She was sitting on the toilet, with the seat down, using it as a seat to talk to me. She was telling me something important. “Your sister isn’t coming home.” “Bridget died.”

Who is Bridget? I guessed that was the name of the child that was in my mom’s tummy. Only there wasn’t a child in her tummy anymore. The baby. The baby that I was so excited about. I helped wallpaper her bedroom, was it a Muppet Babies wall-paper? I remember the ladder, I remember playing in wallpaper goo, I remember hearing, “Stop that, this is for your brother or sister, don’t mess with it, Rebecca.” And now the “brother or sister” wasn’t coming home. Bridget was in heaven. She was my guardian angel now, mom said.

And there were presents. The living room was full of presents. Beautiful baby blankets. There was a yellow one. We could not keep that. We needed to give the presents back, I remember hearing.

I have figured out that my sister was born on my first day of school. She was in the hospital for 7 days; her surgeon was the first surgeon that would later operate on my own daughter 21 years later. The day that my grandmother brought me home was the day of the funeral. I was sheltered. I was protected. I went on being my oblivious, carefree self, because the adults in my life wanted it so.

I want to do the same for my child, my daughter. But how do I protect her and keep her from the harsh realities of life when it is her life that has been oh, so harsh? When she is the one that had the liver transplant at 17 month of age? How do I protect her from that?

 

Dear Love,*

I know that I don’t need to tell you the first part of this letter, but it’s for posterity’s sake. Translation, Natalie adores hearing about how her parent’s lives entwined and she came to be. I know that this love letter will bug a part of you…given the fact that you have zero interest in any form of social media, but, like I said…posterity and all that…

It was 1992.

I was 14.

You were 15.

Sounds like that song from the Sound of Music…

We were in Confirmation class. You noticed me. I was oblivious, as usual. I gave you my number. I spoke too fast. You were tenacious, as usual.

I couldn’t leave the house with you on an actual date until I turned 15, six months later. We spent 6 years together talking every single night on the phone, back when we only had one phone for the whole house to share.

And then one day we didn’t. You were 21. I wasn’t. I wanted to go to college parties. You didn’t.

And so we split up.

And then one day none of that mattered.

All that mattered was us. And everything fell back into place.



When I doubt myself; you are there to affirm me.

When I am scared; you reassure me.

When my strength wanes; you tell me to suck it up. You make me be a better me.

You are my partner, my best friend.

As Dr. Evil said, “Mini-me, you complete me.”

And so I thank you,

For doing the laundry, for taking the dog to the vet, for taking the dog to the kennel, for picking up Natalie from Tiger Den, for taking Natalie to swimming, for coming to her swim meets, for supporting her in everything she does, for watching her dance lessons, for coming to her school stuff, for cleaning up the dog poop, for changing my oil, for replacing my brakes, for noticing the bare threads on my tires, for filling my wiper fluid, for fixing the roof vent, for installing the weather vane because it looks cute and you are up there already and you look cute in a tool belt, for cleaning the toilets, for vacuuming, for making spaghetti, for killing deer and filling the freezer, for being a good dad, for reading Harry Potter to Natalie even though you hate it, for changing the house filter, for keeping the water softener full of salt, for loving my family, for loving me, for sleeping in the waiting room of the hospital so I didn’t have to leave Natalie’s side, for all the errands you run while we are at the hospital so I don’t have to leave her side, for holding my purse, for making me a planting box, for my garden and all the back breaking work, for installing the new light fixtures, for replacing the light bulbs every time they go out, for installing the swing set, for putting the swing set to the curb once you discovered the bees, for teaching your daughter to fish, for your patience, for helping Natalie with her homework, for being active at church, for your faith, for your caring heart, for being the kind of stand-up guy every girl dreams of marring, for your convictions, for your sense of responsibility, for planting ALL 88 of the trees in our yard, for making our house a home, for loving me, for taking time out for your family, for making your child kneel during church, for teaching her to pray, for finding the lost blankie or mamabear or babybear at night when you know that she is stalling bedtime, for getting ice chips for her, for drawing up meds, for still carrying your girl to bed when she asks, for anything I forgot, for loving me…thank you.

I love you. I believe in you. I am blessed to have you in my life.

Love,

Me





*Of my life.

She swims.

She never gives up.

She grins from ear to ear, her eyes twinkling under her pink goggles as she exits the pool. She knows she rocked it. She knows that she swam her best. 

1. I like lists.

2. I also like to swear. I try to keep it clean because this is Natalie’s page. I am writing about her medical miracles, tribulations, and all the assorted bullshit that comes along with having to grow up too much too fast, to help her remember it later on.

3. The goals of this website are simple. To record the life and times of a liver transplant family. It says so, right up there in the byline. I am not aiming for anything lofty, like world domination. If you are sick of reading about our liver transplant family close out of the page, now. You do it by clicking the little “X” at the top right of your computer screen.

4. Keeping track of the medical shit helps to fight the “good fight” with insurance companies. Because I journal everything, right now someone is reading this and nodding his head, I can prove up when we were and when we were not in the hospital.
    a.  When the insurance argues an extra $12 container of diaper wipes, we can remind them of the rotovirus episode of March 2005.

5. PTSD is a powerful bitch. But she can be controlled. Writing, journaling, recording the memories both good and bad, helps.

6. The world is full of assholes. I know that not everyone that reads this page is doing so with our, or even Natalie’s, best interest in mind. I can only control me. I can only control my own reactions to the poor actions of others. I will continue to take the high road.

7. I love my husband. He rocks. If ever there was someone that would be a side kick on the road to world domination, it is me. That’s right. I’d be his side kick. I’d be Pinky to his Brain.

8. I love my daughter.

9. I love my God.
        a.   I’m also a big fan of my Religion, thankyouverymuch.

10. I need more cowbell. 

(Click on each picture to zoom)

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This is a really hard week for me, PTSD loves to rear up and kick me in the behind this week. Actually the whole month of February causes fits of tears welling up in my eyes and me choking them down. They are those kinds of fits where I remind myself to knock it off, because I am incredibly lucky. 

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I am talking about these tonight at Religious Education:
THE EIGHT BEATITUDES OF JESUS

"Blessed are the poor in spirit,
for theirs is the kingdom of heaven.

Blessed are they who mourn,
for they shall be comforted.

Blessed are the meek,
for they shall inherit the earth.

Blessed are they who hunger and thirst for righteousness,
for they shall be satisfied.

Blessed are the merciful,
for they shall obtain mercy.

Blessed are the pure of heart,
for they shall see God.

Blessed are the peacemakers,
for they shall be called children of God.

Blessed are they who are persecuted for the sake of righteousness,
for theirs is the kingdom of heaven."


Gospel of St. Matthew 5:3-10