Showering with a Super Hero

I’m reposting what I wrote last year (with some edits) when Aidan had his first orthopedic surgery. We’ll be in hospital housing again and the weird world of children in hospitals instead of at home.

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I showered with a Super Hero this morning. Two dinosaurs and a monster truck were there also, these forgotten sentries of innocence. We’re staying in hospital housing because my son is having surgery. In this case it’s a beautiful Tudor home that has been converted into shared living space. The previous night behind these closed bathroom doors, we heard typical childhood fussing that most likely accompanied a vigorous hair washing.

Not at all an unusual scenario. Except this time, the bedtime routine was the last before a medical procedure, or possibly this child has a sibling in the hospital. It’s hard to say. Every family has a different story. I wasn’t at all annoyed; it’s not like I haven’t showered with a dinosaur before. I only felt sad that this child had to bathe in an unfamiliar place and that this parent must have been physically and emotionally exhausted having to care for a medically needy child.  A T-Rex was conspicuously absent and isn’t that every child’s favorite? What if he was left at home, and how long will this child and his favorite pre-historic carnivore be separated?

The trappings of a normal life stand in juxtaposition to the world that shouldn’t be; a world of children in hospitals.

My husband Garreth and I had a very Marty McFly moment last night. We met ourselves of 12 years ago in the communal kitchen. A young couple just arrived having taken a bus from their small town up north. They had their two year old daughter in tow; she was slowly taking in her new surroundings. Garreth, a veteran of hospital houses though new to this one, immediately started showing them around and making sure they were fed. They told tales of their hometown NICU and how their newborn son had been there for 100 days before being transferred. “Can you believe it,” their eyes said, “100 days!” This doesn’t really happen in the real world. No one should be expected to go through that. Country folk waiting for a chance to be with their new son in a big city hospital. Their bodies and words held that surreal mixture of disbelief and courage. “I am surviving something I didn’t know existed.”

I get it, young beautiful innocent postpartum mom, I do. What you don’t know is that your strength will continue to surprise you; you will feel overwhelmed and then you will dig down and rise up and fight for this son you are just getting to know. And then later, probably much later, you will sit back and weigh the absurdity of your story and be amazed that you were able to live though it.

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After showering with a Super Hero, I poured myself a special cup of pumpkin spice coffee, a gift from a friend for this very occasion. We set off on our brisk walk to the hospital just like all the other morning commuters, and yet completely different. I walked with my coffee in one hand while pushing my son’s wheelchair in the other just hours before he goes under the knife.

We blend in and head to the hospital. The schedule is already an hour and a half behind. The doctor has recognized that his first patient of the day is precious as well and needs some extra time, attention, and care. We will wait.

The pre-op nurse if fabulous. There’s just something about pediatric medical folks. She spoke to my son, making small talk and asking the important questions. She noticed it was his birthday soon and I remarked that surgery was a pretty awful gift. She reminded me that when his birthday comes around next week he will be on his way to healing and getting stronger.

We will be on our way home, where we belong.

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A Letter to My Husband

I’m re-posting this letter I wrote to Garreth for our 18th anniversary because this is an important week to remember that we’re on the same team. Somehow the stress of dealing with Aidan’s medical issues brings out the best in us. I’ve written before about how My Husband is not Romantic but that he Pinky Swears that he loves me.

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Luv,

You asked me one night as we locked fingers in bed if I’d marry you all over again. I was already half asleep, this night before our 18th anniversary, and I said something quite circular and confusing even to me. I hope I told you I was glad I married you, but I think I may have also said it was better that I knew so little at the time. You figured I wouldn’t marry you if I knew then what I know now. There could be some truth to that. I’m a thinker and I like to make informed decisions. Had we taken those personality tests before we got married we never would have made it to the altar. According to scientific research, we’re not a match.

The whole commitment, marriage, trust thing freaked me out 18 years ago. In this case, I’m glad I listened to all of my friends who instructed me to stop analyzing and just say yes. I’m thankful I got out of my own way. It turns out that the Indigo Girls knew the truth when they sang, “The steel bars between me and a promise suddenly bend with ease; the closer I’m bound in love to you, the closer I am to free.” Loving you freed me from all of that fear and insecurity that almost kept me away.


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We’re not the Adventurous couple or even the Romantic one. We’re not the Best Friends couple who would totally have a blast together even if we weren’t married. I hate to think of us as the Survives Hard Things couple, because really, what a drag, even if it is a little bit true. We’re just us, without a tidy label.

We’ve changed and grown, oh my word how we’ve grown. Remember when I was always right? Remember when you didn’t have words? Remember when I could hold a grudge like nobody’s business? Remember when I had to verbally process everything and you didn’t want to process anything? Over time, we really have met in the middle, a comfortable place. I wait patiently and listen better; you’ve called me your safe place and share more; we’ve both opened windows of grace.

I love that you love me most in that early morning hour; how you never forget to spoon me before you leave for work and tell me you love me even though I’m asleep. I love that you recently told me that those are the moments you remind yourself not to take us for granted. You got me all fired up when you told you me had Big Thoughts about Big Issues and I was ready to dig in, but you just wanted to give me a preface to some conversation that may happen in the future. We’re different that way. You’ll share when you’re ready and you’ll expect all of the fervor I’ll bring. I love that you text me when I’m away from you and tell me why you love me, or remind me of some sweet or silly moment from our past, knowing I probably won’t text you back because I don’t have a real phone. I love that the things that drive me bonkers about you, because honestly they’re still there, are less significant than all of the small, simple, moment by moment ways we love each other.

Maybe we’re the Chooses Love couple. I woke up sulking this morning because of our interaction last night, thinking about all of the words I would choose to communicate with you. You emailed me and asked me out on a date. Sometimes Choosing Love is simple. I learned that from you. When it’s challenging, when it’s boring, when our needs conflict, when we’re empty; Choosing Love is always best. We’re Solid, and Longevity matters. This making of a family, this seeing into each other, the showing up, the hard work, the laughing at I don’t even know what that was the other night that made Liam have to shush us; we’re building something.

Sometimes we freak out when we look ahead; what will we be without our children and how will we spend time together? We’re really not the kind of people who need to go forth on a grand adventure. I’ll be happy sitting in your garden drinking a cold beer while you harvest the tomatoes before we make salsa and decide how many jalepenos to put in before we sit down together to eat nachos and talk about nothing…which is everything, really.

I love you. Pinky Swear.

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A Day at the Museum

Last week Garreth and I decided to have a fun, memory making time just with Aidan. These activities can be difficult to plan. What will he really enjoy? What is nearby and accessible? What would be consider a special activity, outside the norm?

We decided to go to our local children’s museum, and since we thought it best that he not run over the local children, we put him in his manual chair. Aidan was able to wheel around at a reasonable speed and participate in the cool activities at his eye level.

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Garreth and I enjoyed our time together and took a selfie to prove it:

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And because Disability World is with us wherever we go, we stepped into the EEG exhibit and joked about charging people to see us. The point of this particular exhibit is to teach you about bio feedback and calming brain waves which apparently only Garreth has. We strapped it on Aidan and watched the waves go bonkers. Good times.

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We are down to one week before spine surgery. Two titanium rods will be placed around Aidan’s spine from just below his neck all the way down to his pelvis. It will be a long day under anesthesia.

Scalpel and spine, hurt to heal.

Garreth and I are a great team but handle these situations differently. I need to name the monsters under the bed to be rid of them and then plan to be prepared for a variety of circumstances. We’ve known for a long time that Aidan would need this surgery. It’s still considered elective, absolutely necessary but certainly not an emergency. That should take the stress level down a bit, but scalpel and spine, hurt to heal, still builds tension.

My brain and body are in overdrive right now. Garreth’s work changed insurance carriers recently which has led to a bit of a kurfuffle with prior authorizations and such. It’s easy to say that the people who get paid to work this out should just work it out, but generally speaking it doesn’t work that way. I asked one wonderful man at the hospital, after he checked the records and said they had no information about Aidan’s surgery, if there was a chance we could show up to surgery and have no idea who was paying. He said absolutely not. It’s the hospital’s job to figure that out and yours to take care of your child. I love him for believing in unicorns.

And then there is the nursing care. Don’t even get me started. Really. I’m grateful to have a strong nurse advocate who is pleading my case to the state, but honestly, what is there to say? We haven’t had coverage in ages and we’re asking for so little and we haven’t received the level of care we should have.

All of that to say we really needed a day at the museum. Life shouldn’t be all about phone calls and worry and details and such. It should be about laugher and exploration and making memories. So we did.

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