Sand Castles

Jax gasping for breath with a tight, barky cough. Frantically grabbing sleeping bag, coats and hats. Sitting for what feels like forever in the cold night air.

Croup.

We went through the drill just days before Jax was diagnosed with Type 1 diabetes. Then, he progressively got worse until finally, five pounds lighter and with blood glucose levels over 1000, we ended up in PICU.

So, it’s no surprise that as I sat outside with croupy Jax two nights ago, memories of the past 12 months bit me like the cold night air hitting our cheeks.

2009 began with a glorious, sunny family hike in Palo Duro Canyon. Then a bout of croup. 11 days in the hospital and months of fear, learning, praying, waking up every night, finger pokes, treating low blood sugar, injections and the hope that somehow life would get easier with time.

2009 ends with the yard blanketed in snow, sparkling as the sun reflects off God’s white outdoor carpeting and lights up our house. Another bout of croup. Less fear. More learning, hoping and praying. Still waking up every night. Finger pokes. Treating low blood sugar. Five injections every day. And the grim reality that life will never get easier than it is right now.

Dealing with grief takes me back to the ocean. Sometimes quiet and calm. Peaceful. Then at High Tide, loud, raging waves wash over the sandcastles we built yesterday, leaving only a smooth, vague imprint of what used to be. And as my bare toes trace over what remains, I cry because I’ve lost what we worked so hard to build.

I am stronger than I ever thought I could be and somehow life is moving on. Jax, brilliantly happy, brave and strong, still tells me how much he hates diabetes. Still flinches in his sleep when I poke his finger every morning at 4 am (he’s learned to eat a ZBar in his sleep). Still sometimes whispers “ouch” and rubs his tummy after an insulin bolus.Friends and family still don’t understand what happens in our household on a daily basis. Ignorant remarks still slap across my face that is trying so hard to smile, ringing in my ears. Only friends who have experienced deep pain and live with disease can understand the toll this has taken on our family.

As my memories of 2009 play like an old, scratched record, I see God’s Hand everywhere. In the middle of so much bad, He keeps pushing in so much good.

Knocking woke me up a few weeks ago to catch Jax’ blood sugar of 60. Our sweet, amazing diabetic alert dog, Keeper, smelled Jax’ 57 bg (through his closed bedroom door during naptime) when I wouldn’t have checked him for another two hours. We’ve become new members of the Type 1 diabetes family and love every single person we’ve met. I work for amazing people who bring out the best in me and let me take care of Jax first.

Jax got sick the day we left on vacation to San Diego. Scared, armed with enough diabetic supplies to stock the shelves at Walgreens and excited beyond belief, we conquered every scenario and actually relaxed and had fun. We were on a plane for 6 hours. I fed Jax dinner and bolused insulin at 40,000 feet. Jax’ eardrum burst on the flight home. The next morning, we dressed our amazing little boy (with an ear infection) and headed off for the JDRF Walk for Diabetes. I felt as if I’d conquered the world. After that vacation, God and I can do anything.

I’m exhausted. Clinging like a little girl to God’s Hand. Knowing that wherever He takes me, we’ll go together. And we’ll get through. I’m happy, because I know I’m His child and He can be trusted. He’s proved it time and time again.

The sun is perfect. Sky is blue. I close my eyes against the blinding snow and pretend my bare feet are caked with sand. I’m soaking in the sun and building new sandcastles. They will be better because now I have experience. Stronger, because I know what I’m doing.

But please, God. Could it be Low Tide this year?

San Diego 2009

Temporarily Single in New York

My first view of New York City was from the ground looking up.

I was six years old and lying on my back, shoulder to shoulder with my two brothers, gazing out the back window of our family’s orange hatch-back. Honking horns. Sirens. Blue sky. And incredibly tall buildings. Of course I fell in love.

27 years later, I returned. This time at the invitation of my beloved boss and joined by a group of co-workers. One handsome co-worker asked me to marry him from the observation deck of the Empire State Building. Honking horns. Sirens. Dark night sky. On top of one incredibly tall building. Of course I fell in love. And I said, “I’ll marry you someday.”

Eighteen months and one honeymoon in Paris later, I returned to New York. At the invitation of my beloved boss and joined by my husband, Jentry and a group of co-workers. And exactly nine months later, we welcomed our first child into this world. Of course I fell in love.

Many trips to New York later, Jentry and I returned by ourselves. I was there for business. My former beloved boss is now a very dear friend.

This last trip to New York was difficult for me. Emotionally and physically drained from surviving the most challenging year of my life, I made preparations for childcare and typed detailed instruction sheets on how to care for Jax, our five-year-old son with Type 1 Diabetes. It was the first time we’d left him since his diagnosis just 13 months earlier.

I desperately needed the time away, but really just longed to stay home. Ken, my beloved former boss now friend, must have sensed that I needed a good push and something to look forward to. So in his dear, generous way, he arranged for tickets to the Broadway show, Wicked and to the NYC Ballet, Swan Lake.

We arrived exhausted after long travel delays. The City felt familiar, easy. We hailed cabs. Walked through a snowy Central Park. Meandered around the Met and Museum of Natural History. Ate dinner at midnight, then argued like New Yorkers all the way back to our hotel when Jentry actually stopped and searched his pockets after being approached by someone asking for subway money.

Then Jentry left to care for the boys while I worked for three days. I was temporarily single in New York.

Ken pushed me to see another show, Billy Elliot and attend the Westminster Kennel Club Dog Show. Since he arranged for the tickets and because nearly every monumental experience in my life has been spurred by Ken (that’s his Gift), I willingly obliged.

I cherished every single moment of experiencing the city by myself. Standing in the street hailing cabs. Feeling perfectly alone while walking in huge crowds of people. Meeting the lovely former dancer from South Africa who sat next to me at Billy Elliot and then watching the show through her eyes. Keeping a straight face as I realized that men actually wear tuxedos to a dog show. Further keeping said straight face as the local men in front of me argued about seating arrangements with another set of locals. And finally, losing my war with the straight face when one of the sparring locals finally shouted, “Life’s too [bleep]ing short. Sit in that seat and smile.”

But the magic for me was walking out of the theater after Billy Elliot. It was 11pm and snow had just started to fall. Huge wet flakes stuck to my eyelashes and jacket. The noisy city was quietly insulated by fresh snow. I walked the twelve blocks to my hotel, relishing the empty sidewalks. While others found transportation to escape the weather, I walked in much-loved silence." This is how it feels to be alone in New York." I thought. "This is how it feels to be surrounded by millions of people and yet be completely alone."

Home is where two boys and their daddy wait for me. The place where I’m loved without stipulations. It is noisy, mostly chaotic (how many times will I tell those children to leave the dog alone?). My days are spent making breakfast, counting carbs, drawing insulin, giving injections, preparing lunches, carpooling children, playing Uno and chess with Logan, working and meeting friends for coffee. Busy, wild, demanding. It’s my world and I love it.

But for three days, I roamed New York by myself and pretended it was home. Walked in the snow to my heart’s content. Had Starbucks for dinner in a very tiny hotel room where no one needed me. Found my seat at the show and met delightful new friends. Ate at the deli and pizza joint down the street. Didn’t make eye contact with anyone unless I wanted to. Slept to the lull of traffic, honking horns and sirens.

Three gloriously quiet days alone in New York. Of course I fell in love.

Central Park, February 2010

The Met