Hope

I’ve never discussed finding a cure for diabetes with Jax. Perhaps because I don’t want to raise his hopes. Perhaps because I find myself doubting that a cure will be found in his lifetime. But mostly because I want him to face this disease square in the eye and take charge of his own health, instead of biding his time complacently until a cure is found.

So, very casually, I asked my five-year-old what a cure for diabetes would mean to him. Brown eyes crinkled as a bright smile lit up his face. He fell back with a deep sigh and giggled, “That would be Heaven! I could eat whatever I want all the time and Auntie Nell wouldn’t have to freak out because my fingers have so many pokes.”

Then, he was quiet for several minutes. So quiet that I asked him if is sugar was low. “No, Mom. I’m just thinking about what life would be like without diabetes.” He accepted this disease from the start and never complained. Now here I was watching my little boy, for the first time, think about the fact that his life could be different.

I stopped asking questions. Because how much hope do you give a child, when you can’t really promise a cure?

Jax.

And because I look at every single photo and categorize it into Before or After, this was before diabetes.

What Remains

There it was. Lying on the floor, tossed aside by my son, Logan, who discovered it in a drawer while rummaging for art paper.

I stopped.

The red spiral notebook that I’d swiped from my parent’s house just days after my mom died was at my feet. Seven years ago, still aching from the loss of my mom and an unborn baby, I had tucked it in a drawer. For later.

Opening the notebook, I vaguely remember that I hadn’t been able to read her handwriting. Was it because I didn’t want to see what she had written? Or had I been just too overwhelmed to try? Mom’s handwriting had never been hard to read.

There. That familiar handwriting that had written thank you notes to me for everything. And after I’d moved to Texas, I received countless letters filled with idle chatter from my mom, keeping herself occupied.

I recognize the writing. But something really was amiss. I can’t understand a word. I flip page after page, faster and faster. Scanning for anything that would stand out to me. Nothing.

Well, almost nothing.

Amid pages completely filled with scrawled words, some written diagonally over horizontal lines, I make out a few phrases that pop up over and over. And over.

Dear Jesus. Please forgive me. I promise to try hard.

What?!! Was this MY mom? My godly, Christian mother who had prayed, travailed, hours in her room and lived her entire life getting ready for the day she’d meet Jesus? For what did my mom need forgiveness?

I scour each page. Frantic, because I want something that I can hold onto. Something that will make me smile and recall fond memories. Just a peek into the heart of my gentle mother; the mother I had been too busy to really get to know. After all, she was only 60 when she died. I thought I had plenty of time left to ask the questions that needed answered.

Help. Please have mercy . . . . Thank you. Some pages are dated months before mom died. Long before stomach cancer took her life a mere seven weeks after that dreaded word exploded like a cannon and destroyed life as we knew it.

Need hearing aid. Finally, something that sounded like mom. So I keep poring over every word, deciphering what I can and discarding the remainder.

You don’t understand. I can’t think like a normal person. You know I don’t want to be . . . or to die and go when I don’t want to go. I need you to heal . . . In between the words I can barely decipher are scratchy loops and marks that mean nothing to me. I cannot find one page that is entirely legible.

Weeping, I keep looking. Hoping I’ll find something that will tell me the source of her pain. What was she afraid of? Why did she feel she needed forgiveness? Please, Mom. Something. Anything. What was going on with you?

Memories fall around me. Sobbing, I decide this must have begun after she sat, day after day, with her brother as he was dying of cancer. Was that first time she panicked? Or, did the fire in their apartment fuel this despair? She and my nephew had gone for an afternoon walk and arrived at the apartment to find fire engines. A delight for a two-year-old and terrible for my parents, who were immediately whisked to a hotel room and lost access to everything they owned for months during the clean up.

Perhaps it began before that, after yet another hardship? Was it when they couldn’t buy their dream home and were forced to move? For what was probably close to the 50th time.

When, Mom? When? When did life throw so many curveballs that you finally became fearful of everything? When did life no longer feel safe for you? When even God couldn’t be seen as the firm foundation in your sinking sand?

Tears pour down my cheeks and drip to my neck. I wipe them away and wish I had seen this notebook while my mom was still alive. It was a peek into her heart. A heart too weary to see light. Her insecurity was scrawled here on these pages. She didn’t feel she was good enough for God. Surely He couldn’t love her, or so she thought.

I slam the book closed and hit the cover with my fist. How could my precious mother have never experienced the blessed peace I feel from knowing God loves me unconditionally? Why did security in God remain so elusive to her? Who stole the trust?

I want to blame the hellfire and brimstone sermons that were pounded out every Sunday. Fear Hell. Work to please God. You aren’t good enough. I silently curse her mother, my grandmother, for the damage she hurled with her abusive meanness.

Grasping the notebook in both arms, close to my heart, I wonder when I got too busy to sit down next to her, hold her hand, and talk. I took her to doctor’s appointments. I bought groceries. I called her to babysit. I remembered every birthday and holiday. I helped her buy her medications. I researched the best way to deal with anxiety. I encouraged her to take her medicine. I prayed. Took pictures of everything so Logan would remember her. I hugged her tight and told her I loved her.

But I never sat down and took time to see her heart.

Except for the day she died.

It had been seven weeks since her surgery. Seven weeks since doctors told us there was nothing they could do. Just seven weeks. She was staying at our house so I could care for her. And when I heard her shallow breathing that morning, I knew it was the day we’d say goodbye.

I called Hospice. Convinced her to call my siblings to say goodbye. Took pictures of her and Logan eating popsicles on the bed. Called her sister, friends and pastor. Painstakingly went over all her medications with the nurse. Answered the phone and relayed messages. Scooped up my then two-year-old Logan to give hugs and kisses as she whispered “Goodbye, Logan. I love you.” Then, In the middle of the madness, I stopped.

What would I want if this were my last day?

Bible in hand, I slipped into her room and smoothed back her hair. And I sang. She was afraid even then. “Help me, I’m dying . . I've been rebellious. “ I sang about the Blood of Jesus. I read aloud every scripture about Heaven that I could find. I sang as peace filled her room. And then, as her breath took longer and longer, I curled up next to her and told her to go. She was leaving a legacy and was the best mom a girl could have. I’d take care of dad, the kids and we’d see her in Heaven in what would seem like minutes.

I open the notebook one more time and flip it over to the last page. Still hoping for something that makes sense. And finally, there it is:

To my wonderful family,
Remember the good times. Never the bad. The days we went to church as a family were my happiest times. I love each and every one of you the same and very proud of you . . .

[The page is ripped here and I wonder if she tore it out because if anyone found this, we’d say she was crazy or acting doomed]

But her signature diagonal scribble is scrawling up the side . . .

. . . baby I love . . . good daughter and Mom [that would be for Janelle]. Kim, the good mom and wife. I love you. Tristan, I won’t get to know but I love you. Logan, you’re a great kid. Johnathan, Grandma will miss you. John, the faithful father. Andy, I love you . . .

Thank you, Mom. For the notebook. I love what remains.

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

They Can't See

They always ask, “How is Jax?”

And I always reply, “Jax is doing good. It’s his momma that’s on her last leg.”

And then they smile and change the subject.

If anyone actually asked, would I mention that I’m barely hanging on? That while my alarm is set to check Jax at 4 am, most nights I wake up at midnight. At 1am. At 2 am. Sometimes I stay awake until 4 and just turn the alarm off before I go in to check Jax blood glucose levels. And if I do manage to stay asleep until 4 am then I normally have trouble going back to sleep.

Could I actually tell someone that I’ve been light headed for nearly two months? That, two weeks ago, I woke up in a panic, feeling horrible and headed off the emergency room, all the while wondering if I should just call the ambulance so someone could take emergency measures to keep me alive?

How would they react if I casually mentioned that I just finished wearing a 48 hour EKG holster monitor because I’ve been having irregular heartbeats and what feels like panic attacks, but could be something worse? That my blood pressure has been elevated for over a month and I just started taking medicine to lower it. That I tried an anti-depressant for two days and didn’t sleep the entire time; just lay in bed and twitched.

They never ask about me. So I never mention how afraid I am. How mind altering exhausted I feel during every waking hour. No one knows that Jentry works over 70 hours a week, so I’m taking on diabetes by myself. And I’m still working 30 plus hours a week.

I drop Logan off at school at 8am. Jax at 9am. Drive to work. Wait for the preschool to call at 10 am. Back to Jax’ school at noon to check sugar and bolus insulin. Return to work. Pick Logan up at 3pm. Jax at 3:30pm. Sit the kids in front of the TV to snuggle with me while I attempt a power nap. Get up and work for 2 hours. Make dinner. Bolus insulin. Get the kids to bed so that I can squeeze in a couple more hours of work.

Should I tell them I snap at my kids nearly every single morning because they are so loud? They have a hard time eating their healthy oatmeal with flaxseed, which is literally one of the two things that Logan can have for breakfast because he is allergic to wheat, eggs and soy. And so I bark, at least 25 times every morning, “Eat, Logan. Eat!!” The boys sense my tension that comes from my waking up with a horrible headache, bone tired, and so they push my buttons, just because.

What if I cried when I told someone, anyone who might care to ask, that the world no longer feels safe to me? That after you lose your mom to cancer only seven weeks after her diagnosis and when, after a simple illness your child is diagnosed with a chronic disease, you can no longer ignore anything your body is trying to tell you. Even if all the symptoms could simply add to up just exhaustion.

They don’t know that we’ve had very little support from some friends and family. One person suggested I stop reading books on diabetes and start trusting God. Another showed up at a dinner a bit tipsy and spent the evening belittling my experience and the seriousness of diabetes. The rest say nothing, except a handful of comments about how they have prayed for Jax and they KNOW he’s healed. One, with whom we have had very little interaction, said that the “coolest thing about you guys going through this, is how it’s touched our family.” I can’t imagine how it’s touched their family. They’ve never once even asked how any of us are doing. One heartfelt comment, “We see how difficult this is, we know how you struggle and we admire and pray for you,” wrapped itself around my heart with deep, deep comfort.

I don’t need anyone to tell me that it’s all in ignorance that these foolish things happen. Family, friends and acquaintances don’t understand and so they don’t know what to say; how to act. I do realize that. But it doesn’t ease the isolation I feel because no one comprehends what this has taken from not just Jax, but his mommy; his big brother; his daddy.

The past twelve months have stretched me. I have stood in my closet and shouted at God. I have sat at Jax’ bedside at night and claimed his healing. Because my God is a healer I’ll never stop asking.

I have read my bible out loud at the top my voice, weeping as I plead, “Hear my cry, O God; attend to my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy. I will abide in thy tabernacle forever: I will trust in the covert of thy wings.” (Psalm 61:1-4)

I have come face to face with faith. With darkness. With hope. I will not stop asking God for my miracle. But I now accept that His ways are not my ways. With a newfound compassion, I know what it feels like to believe with my entire heart that God heals and yet be forced every day to manage a horrible disease.

Like tightly stretched wool lay across a weaver’s loom, colors and patterns are beginning to form the fabric of my life. Everything that I am has been turned upside down and shaken. The contents scattered. A heap of wool waiting to be put back together. Woven by the Master as He lovingly uses His body weight to tension the loom.

I see differently because my heart is looking. That girl at Sam’s Club. The one who always growls at me and throws my groceries into the cart with blatant disregard. What does God see when He looks at her? What is her story? Does she go home to a husband who hurts her? Or a child who needs her constant care?

During a women’s conference a few months ago, I watched hundreds of women file across the front for prayer and I wept. I heard God, “This one is my daughter.. . I love that lady. . . . She is mine.” He reminded me that every single woman belonged to Him. That He cares for them in ways I couldn’t understand. Each woman had a story.

What if, instead of never taking the time, we stop to look through God’s eyes? If, instead of worrying about the dishes, or what to wear on Sunday, or how we will pay the electric bill that we ask Him to give us eyes to see. Could we minister to families who are hurting by simply stopping to embrace a friend in distress and tell her we are praying? Could one email of encouragement speak God’s goodness into a hurting heart? Could our smallest kind gesture become His hands?

I fight everything that has happened. I still want to kick and scream. But I love what God is doing in me. I cherish new found compassion and the ability to minister to others who are hurting. He’s given me the right words to say at just the right times. I am amazed that He still finds layer after layer to peel away in me as He works so hard to expose something beautiful.

I can’t quite say I’m thankful for this year. But I’m almost there.