Thursday, March 4, 2021

Our new normal

11 days.  So much has changed in 11 days.  I am going to write about it here so years from now I can look back and see how far we have come.  12 days ago I had no idea.  Blissfully unaware, we were dealing with other problems that were already enough to say- "I can't handle any more right now," and "God, my plate is overflowing with worry, and appointments, and sick kiddos- please take some of it away."  Saturday night, the 20th into the 21st, I could not sleep.  Not unusual, my brain kicks into high gear when I am finally quiet and I over think and over worry about life.  I usually recite Psalm 19:14 - "Let the words of my mouth and the mediation of my heart be acceptable to you, oh Lord, my strength and my redeemer."  But I could not, for the life of me, remember that verse.  The verse I have recited one thousand times.  Instead, Psalm 56:3 is the only verse I could remember - "When I am afraid I will trust in You."  And I remember lying in bed thinking - I am not afraid, why is that verse in my head?!  Sunday morning we served at church - opening doors and greeting people, and then we came home to do virtual church.  I'll never forget - I was doing yoga and Noah told me his mouth felt like I had shoved a bag of cotton balls in it.  We borrowed a glucometer from a neighbor (thanks Lisa!) and 530 showed on the screen.  After packing multiple bags, we headed to Hopkins peds er where he was promptly diagnosed with type 1 diabetes.  Two days filled with needles, and doctors, and carb counting, and dietians, and information overload - all the while I felt like I was going to wake up any minute and it would all have been a very bad dream.

Quick side note here - I called my twin sis Liz when we were packing for the hospital.  Her son Ben was diagnosed one year and two days before noah with T1D.  And we would not be were we are today without her.  By the time we made it to the hospital, she had virtually ordered all of Amazon and sent it to my house.  Things I would never have been able to find, things I didn't know we needed.  Low carb snacks, peanuts, skinny pop, protein bars, zero gatorade, juice boxes, sharps containers, fruit snacks, glucose tabs, a bacon pan, a kitchen scale, a diabetic organizer, and pages upon pages of foods with weights corresponding to carb content.  She has taken my 100 calls a day without hesitation, and she and Ben have talked Noah through injection site problems, dexcom issues, and carb questions.  I am a hot mess, but without her, I am not sure I would be functioning.

Fast forward 10 days.  Our lives have forever changed.  More specifically, Noah's life has forever changed and we are along for the ride.  We have a new vocabulary and nifty new gadgets sprinkled throughout our house.  There are sharps containers everywhere, and a diabetes snack drawer in our island.  Our refrigerator has papers hanging on it with carb counts, what to do if he drops under 70, or is 70-100, what foods are "free", and what his current insulin ratio and sliding scale are (these change almost daily).  We say words like dexcom, cgm, insulin pump, tresiba, in a language we hadn't used prior to 11 days ago.  Momma bear appeared with the insurance company, spending hours fighting for an item that is standard of care for T1D.  And through it all, Noah has been amazing.  Let's be honest, he has many days when he is not happy, is frustrated and angry, is mourning the loss of the ease of life he once knew, mourning being able to eat absolutely whatever he wanted whenever he wanted without thinking about it.  But he has taken total control of his diabetes and counts all of his own carbs, figures out his insulin requirements, and pokes that needle into his arm, leg, stomach 4 times a day.  We often hear, "That's not worth my carbs":).

So many people have asked how we are doing - here is a glimpse into our daily life. I wake up 45 minutes before the kiddos, and start my day being a short order chef for breakfast.  What used to be a meal filled with cereal and fruit has turned into bacon, eggs, waffles, and fruit for noah, and a combination of that for the rest.  He calculates his carbs for breakfast, injects his insulin and eats.  With his continuous glucose monitor he is able to see if he is high or low during school, prompting either a snack or a quick run around the cul de sac (thanks virtual school:).  Then carb counting for lunch, weighing the blueberries, choosing what carbs he wants and then finding other foods to fill him up.  More needles.  Then sports - the cause of even more gray hairs on my head.  Exercise burns energy resulting in plummeting blood sugar.  So he eats carbs before tennis or swim, and then has to check his blood sugar every 30 minutes during practice (so much easier with the CGM - a flick of his wrist and his current blood sugar pops on the screen).  Then he stops practicing and goes to grab a snack, and then repeats the process every 30 minutes, until he drops too low and has to stop practicing.  Home for supper, carb counting, insulin, trying to figure out how many french fries are in 20 grams of carbs (not enough- that's for sure!).  and throughout the day, he will go high or low for no apparent reason - like last thursday when he almost passed out during his ap calc class with a blood sugar of 72!  and I just have to keep reminding myself to breathe.

We have been so blessed with a village of friends who have loved and supported us with food, and cards, and wine:), and balloons, and flowers, and texts, and calls, and prayers.  And I am breathing, and sometimes eating (the feeling of dread is constant), and hardly sleeping.  And I am trying to be real with people when they ask how we are doing, which throws many people off because they are so used to me saying we are fine!  But we are not.  We are coping and adjusting, we are angry and sad, we are hopeful and thankful.  Thankful that this happened now and not next year when he is 5.5 hours away at college.  Thankful we caught it so early. Thankful for amazing doctors and nurses. Hopeful for new technology.  And through it all, He is faithful.  Not going to lie, I have been very angry with God.  My plate was already full, overflowing, but now I have an elephant standing on my plate.  A large elephant who won't budge.  My kiddos go through so much pain, and I look around at other families who do not struggle with childhood diseases and I try so hard not to covet their lives.  But through my anger, I know He is there.  He is the reason I can breathe, the reason I find things to smile about.  He is behind every hug, every ray of sunshine, every meal brought to us.  I have heard so many times in the last week, "God never gives you more than you can handle".  Not so big on that statement to be honest.  I can't handle any of this.  If you think I can you are wrong.  I know I seem so strong on the outside, but just breathing takes effort most days.  But I will handle it with God carrying me.  I will be the mother my kiddos need because He equips be, not because I am strong.  Isaiah 40:31 is my life verse, and right now I am waiting on Him to renew my strength, to be my strength.  I will run, and I will soar, not because of me, but because of who I am in Him.  Not today, not tomorrow, but soon.


Doretta said...

You are an inspiration. So thankful that God never leaves us or forsakes us. He understands our anger and frustrations and so thankful His mercies are new every morning. My grandson has TYpe 1 and I know that is is frustrating for his parents as well. I get to experience that when he comes here and eats a meal with us. You got this, day at a time, Sweet Jesus. Praying for you all

Jodie Eberhart said...

Beautifully written. You got this Becca!

Suzanne Sileno said...

Praying for you all! You are such a warrior! I have always felt that saying “God won’t give you more than you can handle” is biblical untrue and insensitive. (I know many mean well) but Life absolutely hands us more than we can handle and it’s only by God’s love and desire to often carry us when we cannot walk ourselves , that allows us to survive and at some point thrive. Walking out this incredibly hard stuff changes us - we will never see life the same again, it’s gut wrenching, yet we can see more like Jesus. I feel your pain as you write and can say the ebb and flow of anger and gratefulness is where it is at many days! I am just so thankful for a God who loves us no matter where we are in it! Praying for you all as you find your new rhythm and new peace!