Adventures with Ellie: September 2017

Oh, goodness. I’m just throwing it out there that from now on, we’re going to plan our philanthropic adventures for the end of the school year and honor Ellie’s heartiversary instead of her birthday. What were we thinking? Or maybe we’ll just space things out throughout the year. Ha! Well, actually, we got delayed on sending things to Boston for her heartiversary, so we decided to lump them in with her birthday outreach. Silly us. So we made the trek down to Cincy while we were in the midst of getting ready for a holiday weekend and camping, getting ready for her birthday, bringing gifts down to Cincy, sending gifts off to Boston, making a meal for the Cincy RMH, collecting a wheelbarrow full of pop tabs, and getting letters out to her medical team thanking them that we get to have another birthday for our bug. I seriously overshot that a bit. We got it done, though. Remind me next spring to spread this all out a little better, though, will ya?

Oh yeah, and four of our five family members started school the week before all of the above shenanigans. This is exciting stuff, though. We have literally been working with our care team for almost a year making sure that things were in place and ready for us to transition Ellie into preschool. I’ve been excited about this for several reasons, but mostly because for the first time, Ellie gets a chance to just be a kid for 2.5 hours a day, four days a week. We pushed back on nursing hours to make sure that she’d go to school without the 1:1 attention she’s always gotten. Don’t get me wrong, we love the fact that she’s had 1:1 care from the time we brought her home with a trach, but now that she’s pretty stable, I think it’s safe to have a nurse just down the hall instead of sitting with her through her day. I want her to interact with other classmates to get what she wants. I want her to interact with her teacher and para and learn to do the classroom routine just as everyone else does. Is this a little reckless? Maybe. But dang it, I feel like we need to push out of the safety zone to socialize Ellie in a way that is best for her overall development. She adores her nurses. For anyone that’s watched her play with them and love on them – it’s amazing. There are times when she reaches out for her nurse over me (which, yes, breaks my heart). But now that she’s preschool age, she needs to start reaching out to other kids, too.

I was pumped to get this rolling – until I made the drive to her open house two days before school started. We were about half-way to school and I started to panic. The immense anxiety started welling up in my eyes and burning down my cheeks. I had the three kiddos behind me, so I tried to have a silent meltdown. We met Brandon at the school and our nurse came, too. As B came up to my window, he could see that I was freaking out and said, “breathe Jackie… just breathe… I’ll handle it”. Thank God for that man. I was hoping I’d pull it together before we entered the school, but I was still shaky. When we entered her classroom and saw ten staff members there to go over her care with us, I lost it again. Dang it. I try not to do this in front of others. Fortunately, I can count on one hand the number of panic attacks I’ve had where I’m completely useless – but this was one. I can’t imagine living with that daily. We made it through open house and continued through our super busy afternoon (Ellie’s open house, Kaleb’s open house, a few hours to wrap up my work day, closing on an investment property, then Lance’s open house in Anna). We had one day left of summer, then back to school for the kiddos.

The boys left early on that Wednesday morning and Ellie boarded her big yellow bus around noon. She was happy about it, signed “ready”, and then waved goodbye to me. I sobbed when that bus left our driveway. I felt like there was so much about her that we know (meaning B and I and her home health nurses), but communicating all of that to others and trusting that she’ll be fine away from you is really hard. Fortunately, her team at school knew I’d be having a hard day and really went above and beyond to make it all better. Her OT sent me a message to let me know things were going great. Her teacher sent me a message and a photo of her playing, and her school nurse sent me a message to update on how care went and that she had a great first day. Ahhhh… can I tell you for the thousandth time that I love Shelby Hills? On top of this, my tribe of other moms who have been or are in the same boat also reached out. I honestly don’t know where I’d be without these moms – you know who you are J. You make this crazy lady feel normalish even on my worst days.

Ellie did have a great first day of school and I unloaded her from the bus at 3:30. She has already grown so much in the first few weeks of school – I know that we made the right decision sending her this year. I know that she’s adjusting well, even though she has a hard time staying in line and likes to plop herself down in the middle of the hallway sometimes. I then went to pick up Lance, who loved his first day, but had a hard time listening. He’s had much better days since the first one. I’m thankful for his teacher that reaches out, too. Finally, I went to get Kaleb. This is his first year being gone all day. He gets dropped off at daycare before 8am, then goes to preschool in the afternoon, and is picked back up around 4pm. When I picked him up on that first day, he was on the playground with the other daycare kids. He ran up to me and hugged me, telling me he’d had a great day. Then as we walked towards the parking lot, he started to cry and held my leg. I said, “What’s wrong buddy, I thought you had a good day?” He said, “I did, Mommy, I just missed you the whole time”. Same, sweet boy, same.

Can I share two stories with you that break my heart, but also warm it? Now… before I start, know that our whole family is a hot mess most days… we have awful times, we have ugly times, we have messy times… but I like to focus on some of the times when my heart is broken in a good way… so here are two stories – normal days in our lives:

During the second week of school, Ellie rode the bus in and then stood in the middle of the gym and cried one day. She was overwhelmed for whatever reason. Kaleb was already sitting with his classmates (remember, he goes straight to preschool from daycare). He saw her in the middle of that big gym, got up from his friends, went up to her and wrapped his big cuddly arms around her. As he knelt there (Kaleb is almost twice the size of Ellie), he had a chat with her to calm her. From there, she went back to her class’ spot in the gym and he rejoined his class. There was nothing spectacular about this… but the compassion that my boys have for their sister amazes me daily. I didn’t witness this first hand, but had three different staff members tell me the same story – with misty eyes.

The next story is a mixture of heartwarming and heartbreaking… I can’t decide how I feel about it yet. One day about two weeks ago, we experienced what we thought was going to be a pretty severe medical emergency. For the first ten minutes or so, it involved Brandon and me relaying phone conversations between one of our nurses, poison control, the ER at Children’s, and the cardiologist on call. My voice cracked constantly while I was on the phone with the ER, with Brandon, and with the cardiologist. The boys and I were leaving a store when it all began. Those monsters loaded into the car quietly and buckled in. I sped home, on the phone the entire time. They knew the drill. Fortunately, we did not have an emergency on our hands that day, Ellie was NOT given ten times her dose of beta blockers… and just before I pulled into our driveway, I could finally breathe. Sensing my relief, I heard a little voice from the backseat say, “Are you okay, Mommy?”

“Yes, honey, I’m okay.”

“But… is Ellie okay?” They both asked. I felt those hot tears again.

Ugh. Those little boys sat there quietly, knowing all too well what a real emergency looked like and knowing that this certainly was one of those days. They shouldn’t have to know this. They shouldn’t have to sit quietly and overhear their mom talk to the cardiologist about how much time they have to get to the hospital and if it’s better to go to the local one and have their sister sent by squad to children’s just in case they need intervention meds right away. Thank you, Jesus, that my baby girl was okay that day and that her brothers could come home and play with her that night. But for real… the heartbreak I feel as I look back at this night isn’t about me, it isn’t about our nurse or about Ellie. It’s about her big brothers who are madly in love with their little sister and have had to sit quietly far too many times listening to me spitting medical jargon – listening as I’m sure they’re planning a trip to grandma & grandpa’s in their minds… not knowing what the heck was going on with their sister. This life may run me ragged some days, but my prayer is that these little boys are able to come through this unscathed. This is the only life they’ve really known… this has been their reality for as long as they can remember. They’ve certainly had to grow up faster than most kids their age and they give us trouble just as much as any other child their age, too… but the baggage that they carry, the compassion they’ve developed… I hope these are things that impact them in the most positive ways in the future.

Those are my hopes. Those are the things that weigh on my heart… and also brighten my darker days. We’re doing this – for whatever that’s worth. We’re off… we’re rolling… we’re jumping into new projects, and we’re enjoying this ride. We’re trying our best to keep everyone healthy, and we’re humbled by the love and compassion in this wild world. Trust me, stand behind that serving line at a Ronald McDonald House and tell me that the things of this world don’t disappear. Thank you all for following along – even when my blog post becomes a dissertation – we love you! To show my appreciation... here are some pics for you to enjoy. I know, worst consolation prize ever. But it's all I've got for ya.