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.