"Special Needs Momma"- #Dayinthelife


Yesterday, at 3:18 am my daughter's Dexcom-CGM-Continuous Glucous Monitor, set off an alarm, that bolts me outta bed & has me racing down a hallway to get to her.
My little girl's blood sugar was dipping dangerously low.
And if not treated, she could potentially go unconscious and it could be fatal.
Without that alarm, my daughter might not have woken up. 
Some nights, when her Dexcom isn't working - It's impossible to sleep.


At 6:38 am I changed my five year old daughter's diaper.
At 7:02 am I poked one of my daughter's fingers, to get a BG reading, figured out the amount of carbs that were in her breakfast and administered the amount of insulin she needed to cover the food she'd hopefully eat all of.
At 7:03 am I gave my daughter her daily thyroid medication & waited & watched like a prison guard till she knocked it down her hatch.
At 7:05 am I made my daughter a gluten-free bagel, in a separate toaster because of cross-contamination.
At 7:15 am I packed my daughter a carb-counted-rationed-and-portioned-pain-in-the-arse T1D/Celiac lunch.
At 7:20 am I gathered the supplies needed, just so my daughter could step out of the house; insulin, a backup pump, test strips, lancets, an emergency glucagon kit and items like apple juice and rockets to treat if her blood sugar drops. 
At 7:30 am I put on my daughter's knee braces and kissed the scars on her caps.



At 7:35 am I get annoyingly irritated at the speed in which my daughter needs to get ready. Hustle up already.
At 7:45 am as I drove to the hospital for a day with FIVE-FREAKING-APPOINTMENTS, I watched my daughter beam from her car seat and yell out, "Mom. Mom. Mom - me so happy."
At 7:46 am I realized my daughter didn't care what we did, a day with her mom, to her, was EVERYTHING. 
At 8:20 am my daughter is STOKED and is in her ELEMENT. As soon as she sees the parking garage, she knows what the day holds. 
  • Pushing as many buttons as she can possibly get a hold of. Girl lives for an elevator. 
  • Greeting anyone - ANYONE - who crosses her path. She probably, proudly said, "Me Pip - Your name?" to 127 people yesterday.
  • It was a day to wait in numerous playrooms within the hospital, all spaces she loved to explore. 
  • And see nurses, receptionists, doctors and specialists, who have known her since she was born. I loved watching her be totally comfortable & confident with them. Getting right behind the desk to greet a receptionist, who once gave her a teddy bear & me a pile of snickers to get me through one of her many surgeries. Showing off her language skills to the nurses, who have loved watching her thrive despite every challenge she's been faced & have hugged me along the way. And impressing the docs with her independence & ability to remember what to do, for all the different tests she needed to have done.
  • She knew it held a day of taking silly pics & watching home videos with her momma.
  • Having a lunch "date" or a snack, either in the hospital cafeteria or a nearby cafe. 
  • And it meant she got to feel so outrageously brave the entire day. Being loved up by me, right beside her for every poke & prode. Getting high-fives & fist pumps from anyone she possibly can. And then be lifted up by her brothers & dad, when we talk about our days at dinner. She undeniably knows how strong we all think she is, on a day, like yesterday.

And yes, the day held so much more that I could have continued documenting for y'all minute-by-minute.  
Like at 9:03 am when I had to wrap her in my arms with all my strength, whispering in her ear how much I loved her & that they were almost done, as they poked around for a vein during blood work. 



Or how much it blew finding out that her ear tubes only stayed in for six months - So, most likely another surgery after summer.  
I could even get into how much it sucks to hear doctors give "wait & see" as the answer. 
Or explain, how I've learn to live in this constant-state-of-fear, wondering when something is going to "break" on her next. 


This is the life of a "special needs or whatever you want to call us" momma.
This is a glimpse of what we go through.
In just ONE DAY.
And yes, yes our children are BEYOND brave. 
But, SO ARE WE.


I went out with another "special needs momma" last night & although our stories and our children are completely different. 
Our struggles. 
Our challenges.
Our fears. 
Our worry.
Our stress.
And our absolute delight in our child, that gave us this title, remains all so relatable.
And the underlining characteristic, I see in all of us. 
Is how bloody brave we really are.








#bravepumpsallaround
#AndShoutOutfortheSixDadsthatFollowtoo
#PiptheBrave 

4 comments:

  1. You have made me cry and smile with this. Everything you go through I feel like I am there,holding with you supporting. You don't know me but we love your family,adore what you give to us. A window into strength beyond anything, a heavenly beautiful commitment to the ones you love. I adore that. I feel blessed to be offered a glimpse into your life,so much different and yet a great deal the same,a Momma's love. Thank you for all you share. Do proud of Pippy ,and you. Xx

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  2. This is so great!! I am a nee mom to a 2 year old little girl with a very bad heart defect .. all the appt and all the poking and medicine is so hard. But she vri gs such joy to me and my family. She is so brave. And my hero.. ❤❤❤

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  3. I love this. I am a new mom to a beatuiful 2 year old. She is also "special needs" as she has a heart defect.. the appts the meds the poke the worries are so hard... but she is so brave and is my hero. Youre a fantastic role model

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  4. Meg M.31.5.18

    I am always happy to see a post from you. You and Pip had quite the day and it sounds like every day has it's challenges. Thank you for being brave and sharing your challenges so openly. They help me remember to choose to be strong and brave too. Sending you positive energy.

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