My husband asked me to go outside and look at the moon with him last night. Our oldest son got a telescope for Christmas last year and we like to set it up in the front yard and look up at the sky at night.
Most nights when we have finished the bedtime rush with the three little ones, my husband and I are too tired to do anything. We each retreat to separate parts of the house to decompress and spend just a little part of our day doing whatever it is that we want, rather than what the kids or work dictates for us to do.
If I am honest, it has been a long time since the two of us have done something like this together — an activity that has no agenda like stuffing Valentine’s cards or doesn’t include talking through some scheduling issue, dollar amount or parenting problem to tackle.
Our daughter, Ellie, is scheduled for her next heart surgery in mid-June.
We found out at her last cardiology appointment that the time has come to attempt to repair her heart. This will be her third heart surgery, and we just celebrated her fourth birthday last week.
Grief is strange. When I first heard the news, I started making lists. I was ready to put my head down and get to work to get my family organized and prepared for what was coming. If I made enough lists and followed through, then I thought we would be ready for anything come June.
When my husband first heard, he was annoyed. He has a lot going on at work and this surgery, and the mental gymnastics that will be required to make peace with what will happen in June, feels like too much.
We have two other kids that we need to think of. We have a daughter who is the center of our family and adds so much to our lives, how do we even start down the road of what will happen to her during surgery and afterwards? What if?
Both of us poured ourselves in to celebrating Ellie’s birthday. We had a family party with a homemade cake, went to the circus, partied at her school and then held a big dance party with all of her and our friends – celebrations that lasted over a full week. “It might be her last,” was the thought that we were running from and something we said to each other late one night before falling asleep.
Once the party was past us, I got angry. I am still angry. It’s almost indescribable and, really, the word “angry” doesn’t do this feeling justice. My anger is frightening. It is cool and calm, and it causes me to move with intention and method. It is complete, as if there is nothing that can be done to change it.
If I don’t take slow, steady steps forward, I am afraid the smolder that is always in my body will spark and create a fire that I won’t be able to contain, and that the destruction will be too great to try to rebuild again.
This anger isn’t something that can be relieved by breaking dishes, slamming doors, yelling into the wind or even drinking a bottle of wine. It is a part of me that every minute is causing me to question each core belief and ounce of faith I possess. And the depth and complexity of this feeling is something that I don’t know how to come back from. I think it will be part of me forever.
But, I have three kids and a husband who depend on me. We have extended family and friends who will be watching while supporting us. I know that my reaction sets the tone for everyone else. If Mommy is sad, the kids will feel it. If Mommy lets on that she is scared, then the whole house of cards starts shaking too. We can talk about how the kids are feeling, but Mommy doesn’t get to be that honest.
I have learned from having my own kindergartener that they tell their teachers everything. Jack tells his teacher when he has a cut on his foot, what we got at the grocery store, what toys he has at home and his plans for the weekend. “I am not going to tell Ms. Petross about Ellie’s surgery,” he told me from the backseat one day recently. “It’s just too scary to talk about.”
These next six or so weeks, for my husband and me, will be filled with many “this might be her last” moments, and my body has a physical reaction each time the thought floats through my head.
It’s not fair. She’s four and should be able to just be. Parents shouldn’t have to be put in this position. Life should be easier.
Outside, looking at the moon last night, I thought about how we should do this again. We should set up the telescope on a night that isn’t so cloudy and with a full moon. We should let the kids stay up late and look too.
I read somewhere recently about how religion can be taught, but faith is innate, something that is inside people and can’t be transferred from a book. You either have it or you don’t.
Last night, I could picture all three of the kids and my husband in the front yard looking up at the stars, just as if this time wouldn’t be the last time.
To subscribe to Typically Not Typical, type your email address here:
5 Comments Add yours
Prayers for Ellie, her brothers and both of their parents. His promise is for eternal life. Therefore, you are correct, this will NOT be the last time! I have enjoyed reading your life stories and all about Ellie. We are praying for joy, for all of you, each day. Find the joy and claim it! Believing in that miracle for Ellie!