Tuesday, January 23, 2024

You Live On

I was asked to present a parent perspective on the Family 2 Family Mentoring program back in November.  However, the schedule ended up too full and they asked if we could come in January instead. Sure, why not? I so did not anticipate what would happen in December. 

Because of your life, I understand how important connection to other families is. Because I share our story, the caregivers can know as well. 

That said, today was good. It was a bit bittersweet. It's been one month since you passed. And it's also not likely that I will find myself at that campus again because of work and other responsibilities with the new campus. As I left, I picked up your temporary marker that a friend made for us. She had arranged for a neighbor to bring it to security so I could bring it home for you. It's beautiful, and as Aunt Kathy said, "There's a lot of life between those two dates."

Another friend told me she could see your fingerprints all over the new hospital. I'd forgotten that I'd advocated for medical gasses in the clinic setting. We don't have that at the main campus and that meant anytime you had a long appointment, I had to be careful to bring extra O2. The hospital rooms are mirrors of each other instead of same-handed (where all the heads of the beds face the same direction). Again, a few of us worked to point out that pediatric patients don't always stay facing the "right" way in bed. And I'm sure there are other things that I just don't remember.


Here is what I said today to all the department heads at Primary's, and a special thank you to Jennifer for being there for me all those years ago.

This program is why I joined the Family Advisory Council because we needed this desperately. I was fortunate in my son's care to have actually had a fairly large social network of other parents who'd dealt with similar things. 

But eight years into it, in April of 2018, Aaron started having seizures. We did trachs. We did g-tubes. I did inhaled iloprost that’s never done outside the hospital at home. I did all of those things and I didn't even blink. Frankly, his older brother who is 3 years older did all of those things, no problem. 

Seizures scared me to death. I was terrified. Looking back, I probably shouldn't have been. They didn't affect his vitals a whole lot. But I knew of other kids who passed from seizures and things like that, and I, I was clueless. I had no idea. And so we end up in the ED. We’d seen neurology, but in the time it took to get the meds approved and what all, they increased. So we ended up in the ED and I have no idea how to make this work. Jennifer's upstairs, we've connected through Rainbow Kids team. She's upstairs with sweet Savannah at the time and she texts me. 

“Do you want me to come down?” 

“Yes! Yes, please come down.”  

I had ER docs, we had neurology, we had nurses, we had RTs because we’re on a vent. We had everybody. And they're like, “well, you're just going to give this med then, and you're just going to do this, and if this happens, you're going to do that.” 

And I'm like, “Are you freaking kidding me? I can’t do this! I can’t make this happen.” 

Jennifer comes down and says, “Girl, this is what you're going to do. And you're going to carry an extra dose of med because you know you might get home late and you don't want to skip it. And you're gonna do this and this is how you’re gonna make it happen and this is what you're watching for.”

I start thinking, “Oh my gosh, she and Savannah do this all the time. I can do this. I can do this. Okay.” 

Now, every one of you out here has had a mentor. Most of you, if not all of you, I think can say have been a mentor. But when we get that new diagnosis, we don't have a mentor. 

I remember talking with a young PICU nurse. She was a PICU nurse here. She does trachs and vents all the time, and at that point in time she was looking at her child possibly needing a trach and she's says, “I don't have an RT in my house and I don't have an attending around the corner and I don't have a fellow and how do you do this?” 

And I replied, “That's OK. Because if you get to the point where you need a trach, you're going to take some hours away from the hospital and you’re going to come hang with me. And we’re just going to do it. And it's doable, and it’s livable, and it's enjoyable.” 

Those of you who knew Aaron knew that that's what he was about. He loved his life. People sometimes say he was restrained by a trach and a vent, well, you know what? I'm sorry. I don't know who in the world gives a child a toy you can't take away when they’re misbehaving. But we did because he thought that's what it was. And he would play with it. And he loved his life. But in large part it was because I had parents who’d been there before me.  As much as we love the staff and all the help we got at Primary’s, it was the parents of children like that who taught us how to enjoy life, not to endure it, but to thrive. 

That’s why this program is so necessary. We need to be able to reach out because they're going to leave the hospital. The idea is not to live here forever. And they're going to go to school. Aaron was in 8th grade when he passed. He was an eighth grader. He loved math. He loved science. He hated writing. You know, kind of like most 8th grade boys. 

That's what we want for all of these children. We want them to enjoy their life and to live it to the fullest. And that, that's why I found the quote from Oprah and I reached out to Jennifer, and said, “Can I use a picture of you and Savannah?” Because she was my mentor, she made it so that we could do it, and you know, actually were able to do it without even blinking pretty quick. 

Sweet boy, I could almost feel you there with me today. You made this possible. Even though you will never go through the doors of the new hospital, you're still there.  And at the main campus, too. You live on in the lives of many children who will never know you, and yet will benefit because you lived. If that's not living forever, I don't know what is. You signed your name to the main support beam, and you are providing support in ways that a typical child would not be able to. 

My brave hero, you're amazing. Thank you for letting me be your mom. (I still miss you.)

"There are some who bring a light so great to the world
that even after they have gone, the light remains."

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