Titanium Tooshies and Summer Grass

I just got back from a drive with Aidan.

Yes, five days after major reconstructive surgery and Aidan is driving. There is nothing simple about that statement.

Last Wednesday, Aidan’s spine was straightened. It took eight hours to place two titanium rods which will hold him upright and give his back a natural sway. This was the hardest day. My siblings came to the hospital and fed us chocolate and read trashy magazines and helped me pick out lip gloss. The possible complications for this surgery are no joke. It’s a long time to be under anesthesia. Doing nothing but passing time can be quite draining and by time we saw Aidan at the end of the day, Garreth and I were exhausted.

At the end of the day the surgeon came down and told us, not only did everything go well, but the one challenge he anticipated (Aidan is too skinny to hide the rods) he successfully dealt with. Aidan spent two and a half days in the ICU before he moved up to the recovery floor. He has a thick bandage over his entire spine.

Garreth and I split our time in the hospital. He took the first four days. He called me at every shift change to tell me about our new nurse. He kept notes about who came in and said what and distributed what meds. He was amazing. We made the switch yesterday and the nurse made a remark about what a great team we are. For whatever reason, this is our strength. Garreth and I are great at self care (eating and sleeping and breathing fresh air – which you would be amazed at how many parents don’t do that) and communicating and managing stress. Apparently hospitals are our sweet spot of marriage. Yes, weird, I know.

Five days later and Aidan is driving. This means he’s sitting upright on his little titatium tooshy and using his recently cut muscles in a new way. He’s had some sudden seizures that have, of course, caused him pain as does turning him, but he recovers from each of these moments incredibly well. Aidan is absolutey amazing. He is patient and brave.

As I’m sitting here in our hospital room, with our personal belonging sprawled all over the place like we’re taking over, I can’t help but reflect. We were on this very floor just over a year ago with Aidan recovering from double hip surgery. At that time, every move he made left him crying. He was dehydrated resulting in an increased heart rate. His meds made him hallucinate and left him somewhat vacant. Comparatively speaking, this is a walk in the park. Of course, I’m not the one who performed the surgery nor endured it, but still, a walk in the park.

Which is weird when you think about it, because just a few weeks ago, anticipating this surgery, Aidan and I walked at the park. It was a gorgeous sunny day and we drove for a bit, walked a little, and then lay on the summer grass. That seems much more in line with how life should be. Aidan sat at the window today, separated from the sunshine by a colorful decorative pane of glass. Pain control is the name of the game now, balancing wake time and healing sleep.

The nurses don’t want to see him go, because, of course. But we will be home in record time, walking in the summer grass.

Welcome Monkees

According to Glennon Doyle Melton of Momastery, Monkees are like monks,

in that we put our faith in something beyond ourselves, we find value in quiet, and we practice living peacefully in community – here on the internet and beyond. We’re unlike monks in that we curse and watch trash tv and become annoyed quite easily. So we settled on Monkees. 

I’m honored that my post, “Wishing Him Gone” is featured today on Glennon’s blog and I’d like to give a warm welcome to the Monkees visiting my little corner of the internet.

It’s a strange day here.  Aidan is having major orthopedic surgery. Eight hours under the knife to straighten his spine and secure it with two titanium rods and a sprinkle of cadaver bone. Eight hours we wait, each moment under anesthesia coming with increased risks. Eight hours when we’ll receive six phone calls from the operating room to tell us that Aidan’s surgery is progressing just fine.

I’m most nervous about the waiting, not about the cutting and fastening and stitching. It’s just a long time to purposely not think about the one thing you can’t help but think about.

It’s a strange day to share with the world that there was a time I believed myself incapable of this kind of fierce love and protection, that I looked at my boy and felt only fear and discouragement, that I thought carrying Aidan through a world of doctors and therapists would crush me.  It’s all so different now.

On this strange day that I’m wholly focused on Aidan’s surgery and recovery, on making the time pass, I’m also grateful to be embraced by the Momastery community that believes that We Can Do Hard Things. I want to hear your stories, I want you to stick around to hear more of ours (which will be more joyful soon I promise), I want to read and appreciate all of your comments, I want to say thank-you for joining our journey.

That probably won’t happen until sometime this weekend, when I’m home in the stillness and Garreth takes the first shift at the hospital. But know that on this strange, tense but quiet day, I feel your presence and I’m grateful that We Belong to Each Other.

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To my dear readers, I’d love to introduce you to the Monkees. Glennon is a community builder, encourager and teacher at heart. She taught and loved many children including our kids with disabilities during her professional teaching days. Glennon has used her voice and platform to help others in need, including a special purpose school and families who needed an accessible van. How many ways can we love that?

On occasion Glennon hosts Love Flash Mobs to raise money for these projects. To promote inclusion, and you know how I love inclusion, she caps the donations at $25. That’s the maximum gift. Here’s what’s so beautiful about that – it makes room for more people to give because we know that in giving we receive. I would encourage you to follow her blog to part of her Monkee community.

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Regarding surgery, we are expecting no real news until the very end of the day and we will most likely not see Aidan until the evening. I will do my best to keep FaceBook updated at some point. Thank-you for being part of this journey. 

With love and gratitude, Heather and Garreth

 

 

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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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