The phone number no parent ever wants to dial.
Just three little numbers.
The front door is opened wide. Daddies pacing. Don’t want them to miss the house.
In a matter of minutes, a fire truck rumbles into our small cul de sac in the way that only fire engines can rumble.
Big men in suspendered uniforms toting bags and equipment pour into our home.
Oxygen masks on the bittiest of babies are put into place.
Always with the questions.
Just minutes later, the ambulance pulls in.
Where even more uniformed helpers pour into the living room.
Mommies answering. Again.
Walkie talkies chirp and beep.
Notes are taken on metal clipboards.
As quickly as they rumbled into the neighborhood, they take the teeniest little girl with them on a much too big for her stretcher…the one that makes her look even more impossibly tiny…they rumble out of the neighborhood with your mommy in the back and your daddy following close behind.
And then silence. The chaos is over. The front door is closed. All is calm.
But this house of 6 is now smaller by half.
And in the middle of it all, seemingly forgotten, are the others.
The siblings who watch this.
Who take all of this in.
Who may not have the diagnosis on their medical charts, but share it with their sister just the same.
Epilepsy is not just Jill’s. It is a cross we all bear. Each in different ways. But each very real.
As a mom to four…as a mom to special needs…as an epilepsy mom…I try so hard to balance the needs of the many. There may be times that one of my babies needs our attention at the expense of the others, but the pendulum swings and I carve out intentional time for the siblings who don’t have the need for an entourage of firemen. (Skatepark anyone?)
Encourage your siblings. Share in their joy. It’s on our family canvas. Perhaps I should add Weep when they weep. Actually, yes. I will.
Henry and Lucy have witnessed this scene more than once. We have talked at length about how they need not be scared. Firemen and paramedics are helpers. They are good. Not scary.
So they stand back in the shadows watching the hub-bub. Side by side. So little. Leaning a 3 year old frame onto a 5 year old frame. I wink at them from over broad shoulders administering meds. They are so small. Side by side. They may fight about yellow crayons, but they seek comfort in the other regularly.
Lucy had had a rough day and had managed to earn herself an early bedtime that night. She slept soundly above our heads. God’s grace is so beautifully sneaky sometimes.
My guess is that she may have had a harder time witnessing this scene, watching “her Jilly” be whisked away. That will be for another day, I suppose.
But our last seizure before this one was 9 months ago. Nine months is a long time developmentally for a little boy. A boy who is now 5 and a half processes much differently than when he was still 4.
This time, he stood watching over the back of the couch…respectfully out of the way…and crept his way to his mama’s leg where he buried his head down deep and with a quivering chin and tears threatening to spill, he whispered:
“But Mommy, now I won’t get to play walking with Jilly anymore…”
He was trying so hard not to cry. He’s getting bigger now. But his little heart, the one that’s three sizes bigger than I’ve met on any child, was fit to burst with grief.
I love how he expressed his five year old love for his sister. He often stands Jill up, grabs her hands, waiting so patiently for her to get steady…and then walks backward holding her hands. He always exclaims “Mommy! I’m hardly even holding her! She’s almost doing it by herself!” And she giiigggggles. Laughs hysterically. For some reason, brothers helping us walk down the hallway is the most delightful of things. Inevitably, someone loses their balance and they end in a pile of uncontrollable laughter. Play Walking. It’s their favorite. It’s how he loves his sister. And he wanted to be able to do it again…
My mama’s heart. Somedays I wonder how much it can bear.
“Oh, sweetheart. No, no. Jilly is coming back home. She’s not going to leave forever. We just need to take her to the hospital because she is sick. The doctors need to give her more medicine to stop her seizure, and then we will be home. Promise.”
A quick prayer shot up simultaneously that I wasn’t lying to my boy. I wanted to promise that. I did.
He shook his head. Understood. Wiped tears away with a hard pressed hand to his eyes.
And for the first time, I sent him away. ”Go with grandpa in the other room, okay? Maybe do a puzzle?”
We talk a lot afterwards. Cuddled up in my big bed. When exhaustion from a long day keeps little boys calm enough to chat with their weary moms. Process events. Talk about bugs and slime and whatever else little boys are enthralled with. Sisters being whisked away on ambulances.
But my question, dear reader, is what should I do while the hub-bub is going on? While I can’t (and won’t) shield them from the entire scene, do I let them see things as they unfold? No mysteries. No sense of being shunned. Will my effort to protect their hearts make them instead feel sent away…unwanted…unimportant?
Or, do I let them stay? Rub their backs and give them a wink…while they take in every detail? Every needle poke. Every sound and smell and sight. Sisters laying unresponsive on the couch. A team swarming. Moms rushing upstairs for shoes and a jacket.
They will likely always be home when it happens. I may be home alone with no other adult until someone can get to my house to help…so they will always see something. But do I let them just stay? Does it feel safer to know what is going on than to guess what might be going on? Imaginations running away. Worry because you can’t see what is going on? (Like when doctors send family out of rooms and close the door…anguish!) Or is it too much exposure for little hearts?
I’d love to hear your feedback and thoughts. Maybe you are that sibling? What did your parents do? Do you wish differently?
I don’t know. I really don’t. But I should probably decide before I have to make that decision again. They’re getting older. They understand more. I need a game plan. Because I love them fiercely too. They are so brave.
Bravest kids I know.