“And Me, Mommy?”
“Can you PLEASE just stop asking me things? Can’t you see I’m changing Isa’s pod? You’re making me lose my concentration!”
“Just wait! I’ll get you your drink after I check Isa.”
“Why does Isa get a juice? Because she’s low, that’s why. Just have one already.”
“Okay, you just made me lose count. Can you please just wait until I add these carbs up before talking to me?”
Wow. Just writing those phrases stings. Reading them out loud sends a little shot of pain right into my heart. Even worse is having to admit that these are the norm in our house. These are staples in the communication flow I have with my kids.
But not all of my kids.
I remember one time a few years ago when I had decided to do “special days” with each one of our kiddos. They were in preschool and I surprised them one by one at school and said “TODAY is YOUR special day with mommy! Just you and me!”
They were so excited. I wish I could have kept bottles of those giggles and smiles of joy.
I remember sitting in Pizza Hut with Max, his little 4-year-old hands barely able to hold a whole slice. He was going through his firefighter stage, even adamantly refusing to take off his firefighter costume before heading to a doctor’s appointment one day. I just knew he would be over-the-moon excited about where our special day would take us.
As we pulled into the station, I could barely contain the surprise.
“Do you know where we are, buddy?”
His smile was huge.
And then I heard it.
I pulled my phone from my bag, a ball forming in my stomach before even seeing that familiar number on the caller ID. Why today? Why right now?
Isa’s insulin pump had failed and was alarming. The school needed me to come in and change her pump site.
I looked at my little boy’s face as he impatiently pulled at the child-locked-secured car door handle, ready to burst from the thought of meeting real firemen and seeing actual trucks up close.
In that moment I made a decision. A decision I’m sure that many reading this might view as irresponsible.
I turned off the car and we went into the fire station.
Max went on every single truck. The firemen picked him up and let him ring the bells and honk the horns. He wanted to take pictures standing on the front of the trucks and with each crew member. They happily obliged with this 4-year-old wishes. They gave him a cheap plastic firefighter helmet to take home and a gold “Junior Fireman” badge.
He was in heaven. My little boy had his “special day” with mommy and it was perfect.
But the happiness in my heart by seeing the smile on his face was very quickly replaced by guilt as I glanced at the clock on my dashboard, my foot heavy on the gas pedal, the pressure of panic supplying the force.
Twenty-five minutes. We had been in the fire station for twenty-five minutes. Isa had been without her pump for 30 minutes by now and it would be another 15 before we got to the school, maybe 20. As we drove along all of the joy I had felt watching Max run back and forth through the fire station and hearing his high-pitched toddler laugh had disappeared. The devil perched on my shoulder telling me it was fine. Taking one hour away from diabetes was no big deal. Why should the other kids be constantly placed in a holding pattern for my attention? Didn’t they deserve to have the it be about them for once?
Or was that the angel saying that?
See, that’s the real issue here. We have to decide which decisions are good and which are bad. Of course there are times where medical need should trump someone asking for a cup of milk. But what about the times when our frustration with type 1 is passed on to our other kids without warrant? Will Isa, and type 1 diabetes (T1D), always be the center of our attention?
A few weeks ago I was scrolling through Instagram, Mia snuggled up next to me on the couch. She quickly spotted a photo of Isa that we’d shared on her Inspired by Isabella account. She asked to see more. As I scrolled down I knew what was coming.
“And me, mommy? Are there any of me?”
I scrolled some more. Isa testing for her belt at taekwondo. Isa ice skating. Isa climbing a rock wall. Photo after photo documenting her sister facing T1D head on, not letting anything stop her.
“And me, mommy?”
How do you explain to a kindergartener … actually two of them … that their sister’s life has challenges that they will (hopefully) never know? That each day of their sister’s life is full of unknowns … unknowns that can be life threatening? Unknowns that rely on decisions that you, as a parent, must make 24/7. That their sister’s life is dependent on you in a way much different than it is for them.
How do you let your children know that no matter how much time and attention you MUST devote to their sibling that they matter just as much? How do you relay this when your actions tell them something much different?
You just do. You just have to. WE have to. We have to make sure all of our kids know that they matter. That they have their own special place in our world and that they aren’t understudies to their sister because she has this disease. We have to make sure that they understand the immediacy of certain aspects of Isa’s care and try not to take our frustrations with managing this disease out on them. We have to work hard to ensure that they don’t become filled with resentment and, as they grow older, we fear this is only a matter of time.
But for now these kiddos are the best of friends. We know that Max and Mia wouldn’t change Isa for the world and that T1D is just a part of who she is. They are truly the best siblings a girl could ask for and their support and love for her makes my heart swell with pride. From carrying her kit when we are going out somewhere to getting her a juice box when she is low, these three are a team. Each playing their own special part in our family—none more significant than another. Parts that without one another would just not be the same. This is something we need each of them to know.
Of course, it’s much easier to write this list of things we should be doing than to actually follow them. One low blood sugar notification from the Dexcom and our frustration grows and impatience builds. One call from the school nurse asking us to come in to change a failed pump site and we are back at square one.
But we have to try. We just have to.
“And me, mommy?”
Yes. A million times, yes.
Cheers to Changing the World,
This post was originally published on Inspired by Isabella.
Read The Organ that Matters Most by Kristina Dooley.