45 Minutes

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Preface

It’s been one year ago today (the day I sit to start this blog) that Greyson and I set off for our African Adventure.

An.
Entire.
Year.

I intended to write this blog and the ones that will follow when we returned, but I didn’t. I couldn’t. I still feel like I SHOULD have. But, frankly, I was unable to do so.  In a display of giving myself grace, I will refrain from excuses or apologies. That is another blog for another day.

Today I am simply grateful that the words waited patiently.

To each and every person who read my first blog post and who followed our trip on Facebook: Thank you.  If you haven’t read the first post, stop and do that now. For those of you who followed along on Facebook, emailed and sent text messages, I felt you with us each day. You may recall some of the stories I will share on this blog, but for the most part, I intend to share thoughts, feelings and experiences I could not adequately and did not express on Facebook.

Our trip was everything I hoped it would be. We took in the sites, smells and textures of the world. We dipped our feet in the sand and soil of  new countries and continents. We celebrated living. We made new friends. We were touched by others’ kindness. We felt the spirit of exploration and adventure…of possibility and discovery.

The morning we left, we loaded our bags into the car under dark skies, shut the car’s doors, turned on the engine and found “Africa” by Toto playing as we pulled away. Magic.

First Stop. London, England.

In London we saw red phone booths and streets that looked like those from the Harry Potter movies, pigeons, cars driving “on the wrong side of the road,” big red double-decker busses, Windsor Palace, Victoria Station, Big Ben, the London Eye, Shakespeare’s original theater, the River Thames, the London Bridge, the Tower of London and the Crown Jewels.

We witnessed the changing of the guards at Buckingham Palace. Greyson rolled down hills in the English countryside encountering a bit of sheep poop along the roll, which Greyson said was “totally worth it.” We bottle fed lambs, held guinea pigs and sat amongst a fleet of swans. We ate ice cream and dipped our fingers in the sand and the sea. We tasted “chips,” crisps, sausages, hake, and blackberries off the vine.

We saw Stonehenge. We. Saw. Stonehenge!  We saw thatched roofs, indian runner ducks and beautiful green rolling hills for as far as we could see.

Greyson declared at some point that he may permanently change his English to refer to “fries” as “chips,” “chips” as “crisps” and to use the word “fancy” in place of “like.”

All of this … in 4 days.

I could expand on so many aspects of our stay in England, but since this isn’t a book, I’m going to contain myself. I do, however, what to to take you back to our 45 minute trip through the Tower of London.  Because, even now, a year later, there is something about what this 45 minutes meant to me that I cannot shake.

We came about our tour of the Tower of London somewhat by chance. We passed by it on our double-decker bus tour, but we hadn’t planned to go in. I read that we could take a boat ride free of charge with our bus tour ticket, so after an hour or so on the bus we exited where we could hop on a boat and take a ride on the River Thames. The tour guide on the boat was funny, and Greyson enjoyed it much more than the bus ride, which had a prerecorded tour heavy on facts but low on humor. The guide pointed out the sculpted bronze lion heads lining the canal along the river, and he shared a saying he said was familiar to Londoners: “If the lions drink, London will sink.”  He then added another rhyme that Greyson was particularly fond of: “If the river reaches the duct, London is truly…” (The tour guide did not finish the rhyme, but Greyson took great joy in informing me with his signature mischievous smile what he was going to say.)

The boat docked near the Tower of London. As we exited, I asked Greyson if he wanted to go in. He did. So we made our way to the ticket booths, which were a bit of a walk up an incline on an uneven brick walkway — two things I probably would never have noticed before. But, now, they present added challenges.

We approached the first ticket booth and the cashier told us, “You only have 45 minutes. We recommend 3 hrs.”  “That’s fine,” I said. “We want tickets.”  He informed us they close in 2 minutes and his drawer had already been counted and closed, so I should go to the next booth.

We went to the next booth. A woman in front of me asked a question, and the cashier told the woman they were closing. I interrupted as only a rude, brash American could to inform her that we wanted tickets before she closes.  I was scolded for interrupting and sent to yet another cashier.

I composed myself, smiled and informed the attendant that we would like tickets. She informed me we would only have 45 minutes. They recommend 3 hours. I smiled, again, told her that we were aware but that this was our only chance to go, as we were leaving London the very next morning and “today, right now, we HAVE 45 minutes.”  She was quick and we got our tickets.

We made our way to the entrance and I asked the guard, ”What is the one thing we cannot miss?” The Crown Jewels.

We entered the massive castle and it felt as if magic fairy dust had been sprinkled over our heads and we had stepped back in time about 900 years. Greyson was wide-eyed and asking so many questions I could not even begin to answer them all.

We wanted to get to the Crown Jewels, so while clinging to my arm, Greyson told me to let him walk on the sidewalk because it was easier than the bricks and he could walk faster. We got to the Crown Jewels with plenty of time to spare, and there were no lines. Let me say that again: there are no lines. We saw swords that were 400 years old, and jewels and diamonds the size of eggs, and a gigantic punch bowl made of pure gold that holds 144 glasses of wine. (I think I appreciated this particle artifact more than Greyson.)  As we exited the building housing the Crown Jewels, we saw cannons and artillery memorialized along the sidewalks.  They had specific names. I did not know them but he did.  He told me he missed his dad.  “Dad would love this. But,” he said, “I bet Dad has been here.” And, in fact, he has.

Then, we stumbled (Literally. Stumbled. That is what we do.)  into a gift shop. Greyson found the plastic swords and axes.  He picked one out for himself, and one out for a friend, and then we walked and talked and discussed how he couldn’t wait to share his gift with his buddy.

Our time was about up, so we started toward the exit. But, wait! We had our two LEGO traveling companions with us, and they had not yet seen the Tower of London. So, on the sidewalk, we laid all our stuff down, dug out the guys and placed them on an iron fence rail so they could take a good look around before posing for a picture.

The walk out was full of wonder. There were gigantic stalls where African elephants were kept and a sculpture of a polar bear representing an actual polar bear that lived in the tower in the 1200s. The exit is near the side of the fortress that flanks the Thames, so we saw several walls with arrow slits and winding passageways.

We peaked and peered into each nook as we slowly made our way out — talking and imagining what life was like for the people (and the animals) who walked within these walls almost 1000 years ago.

After making our way all the way back up, past the ticket booths and across the street, we got a cab and spontaneously decided to go have a lemonade and a Guinness at the pub not far from Shakespeare’s theater where the famous playwright frequently tipped his glass. [Disclaimer: the actual pub has been torn down, but a new pub has been erected in the same location.]

We toasted as we often did, recounted our day and played with the plastic swords and we stumbled and people looked.

We spent the last few days in England in the countryside with my sister’s in-laws, John and Dorian, whom I have always adored. After being spoiled and hugged and brought breakfast in bed, Greyson decided that it felt like Dorian could be his grandmother. John and Dorian were the perfect tour guides, and they knew exactly what to do with an 11-year-old boy. So much so that Greyson declared that England might be his new favorite place in the world and that we weren’t staying long enough. I chalked this up to a very successful start to our adventure.

In addition to being wonderful tour guides, John and Dorian have a wonderful ability to sit in the present and talk and just be. In our down time, while the rest of us would linger at the kitchen table, Greyson tucked his ax in his sock and his sword down the back of his jacket, walked out to the backyard and went somewhere his imagination took him…it looked as if he were in battle and he was winning.

And THIS is where I find myself standing on the corner of joy and grief.  As I write this and remember, I realize that one year later he cannot walk out a door alone anymore. He cannot stand with an ax in his sock and a sword down his shirt and fight. He has lost that ability.

When you have 45 minutes, take it. Grab ahold of it and enjoy every second. When the ticketing agents kept trying to discourage me to enter the Tower of London because we only had 45 minutes, I wanted to scream at them. They were simply informing me that we had 45 minutes and that more time was recommended. I, however, heard: If the time you have is short, it doesn’t matter. Don’t bother.

I will always bother. I will always fight. Even if we don’t win. I still feel that voice deep at my center, the same one that said, “We HAVE 45 minutes.”  It is defiant and grateful and angry and hopeful. In those dark moments when I feel time slipping away, I still whisper to myself that I HAVE 45 minutes, and I remember our 45 minutes at the Tower of London and all the joy we packed into each second we were there.

 

 

To Africa…

In a few days I will board a plane with my 11 year-old son, Greyson, for a three week adventure that will span 3 continents and 5 countries. We will visit England, South Africa and Mauritius (a small African Island in the middle of the Indian ocean) with a touch down in Canada. We are excited.

It’s just the two of us.

That’s the answer to the question I get most when I tell someone about our trip. We are two of a family of four.  My husband and son will be with us in spirit.  But they will be holding down the home front. And, let’s face it, somebody needs to make money. (Answer to the second most asked question I receive: Yes, My oldest son was invited. He didn’t want to miss three weeks of school and football season. He doesn’t feel left out.)

So, why Africa?

Let me start where the story begins. Just over three years ago, Greyson was diagnosed with a rare, neurodegenerative disease called Friedreich’s Ataxia. Life as we knew it ended that day. Friedreich’s Ataxia (FA) is a life shortening and debilitating disease. You can read more about it here.

Greyson’s has hypertrophic cardiomyopathy, meaning the muscles that are the walls of his heart are thickening. He has difficulty maintaining balance and walking is becoming more difficult. I don’t think he has been able to run in well over a year.  The disease causes scoliosis and it is progressing.  His hearing is getting worse. I notice he has trouble hearing in groups. He prefers an iPad to the TV because it is closer and he can wear headphones. His handwriting is slow and nearly illegible. His speech is slurred but he is still easily understood. His hand shakes when he picks up a glass and he often modifies how he chooses to take a drink. I could go on but honeslty the list is too long.  It consists of things that most of us simply take for granted. The basics.

On the ride home from one of his cardiology appointments, Greyson asked me if he was dying. I answered, through tears, that we are all dying. He responded, “I’m dying faster.” And, frankly, he is.

Greyson started wearing glasses a few years ago. Last January, we learned his optic nerve is thinning. Yes, that means what you think it means. The good news is that it should be a slow progression. I was in my garage cleaning something when the ophthalmologist called me. I recall sitting down after I hung up from  the call and thinking: Really? You are going to take everything? That night I handed Greyson a travel book and said how about you and I go on an epic adventure? You pick. Anywhere.

The next week my sister sent him a travel book specifically for children and he read it from front to back and made lists on where he wanted to go. He read it until it started to fall apart. Bali was in the running but he finally settled on Africa saying, “I’ve wanted to go there my whole life.”

And so we are setting off to hear sounds and see and smell and touch and put our feet in the sand and soil of the earth. We are off to experience and celebrate living. We are off to feel the spirit of exploration and adventure — to feel that part of life that is about possibility and discovery.

Greyson is, like all our children, a remarkable human being trying to navigate life. He loves his friends. He has a wonderful imagination and still enjoys playing within it. He is wicked clever with a potent sense of humor. He is determined and stubborn. He is doing the best he can to sort out where he is and what is facing him with a limited ability to even give words to his feelings.

I’ve spent the last three years learning how to stand on the corner of joy and grief. Raising a child with a chronic illness, a rare disease or a terminal diagnosis asks us to live at the intersection of these two emotions. There is still life to be lived and fun to had. There is still plenty of joy to experience.

This blog is for all the parents like me who wake up every day with a broken heart but love fiercely anyway. It is also for the people who love us and who maybe, just maybe, have the guts to sit with the complexity and pain of our situation. This blog is for caretakers. It is for anyone who finds themselves trying to navigate the corner of joy and grief.

Our circumstances and our children are no doubt as different as we each are as individuals but I believe we have common ground – a common ground that needs a voice.

If you want to follow our trip feel free to follow my personal page on Facebook or “Frankly” at fb.me/thecornerofjoy.

If you would like to donate to the Friedreich’s Ataxia Research Alliance (FARA), you can find out how here.  I believe a cure will be found. I hope it comes soon enough for it to help my son.