The Heart (and the surgery)

I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.

Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.

And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.

Wyoming photos by Peter Lobozzo

I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.

Right after our last photo session (below) everything changed.

Pictures would be different. Life would be different.

Photo by Ashley Blahnik of Dearly Photography

But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.

Photo by Katie Williams

Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?

Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.

The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.

Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.

I am scared.

My heart hurts.
Look at this girl.
She’s come so so so so far.
She’s independent.
It is amazing.
It is hard.

Rob calls this her “Sound of Music” photo

Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.

Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.

So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.

Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.

I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.

xoxo

Jackson Hole, WY

If you haven’t read our last vacation re-cap, you can read it by clicking here. That was only three weeks ago, and I’m thinking it was our worst family vacation to date, but here we are facing all our fears again, and traveling even farther with Reagan. It’s amazing we were able to muster up excitement for another trip after our last one.

This time we brought Lauren, our first nanny, who has loved on our family for the last three years and traveled with us to California two years ago to see my family. Lauren is now a speech therapist and has amazing patience, and is loving and firm with Reagan. With her on this trip, surely Reagan will be a complete angel.

Unfortunately that theory was disproven on the plane, before we even left the ground.

I know many of you who read this blog know me well; but even if you don’t know me well, I think you probably know that I don’t hold back. This is especially true in confined airplanes when my child is acting up and I am on the receiving end of dirty looks, nods of disapproval and long stares. So when the woman in first class sitting caddy-corner to me gave a minimum of seven lengthy stares and head shakes at me, I said, “DO YOU HAVE A QUESTION?” I said it with the flight attendant standing in between us, who has obviously dealt with lots of different people, families, kids, disabilities, etc. She was un-phased. I said it loud enough for the rows in front and behind us to hear and staring someone in the eyeballs makes them uncomfortable, not me.

I was so upset. I have a screaming child, who’s pulling hair, trying to bite and I have to discipline her in a 3’ aisle with 150 people listening, watching and this lady, openly judging. We are doing our best, I promise you we are doing our best. I can’t always control my child because she’s her own human being, with her own feelings and emotions and personality. Did you know her name (Reagan Elle) means little king? And she really embodies that meaning, don’t you think?

For the duration of the flight, I had Bloody Mary’s, and had one too many. Our plane was an hour late to take off, they were screwing things on and off right by our row, and adding extra gas that they forgot was needed. Our connection was only 45 minutes to begin with, so we had all resigned ourselves to the fact that we’d miss our flight, we’d rent a car in Salt Lake and drive five hours to Jackson Hole. Rob even received an update from Delta that they re-booked us while we were in the air to a flight the next day at 11 a.m.

So many things out of our control. I had my mom and a few friends praying we would make our connection. In the air though, I thought it was an impossibility. I didn’t even pray it would happen.

But…when we landed at 8:01 p.m., and the flight attendant opened the doors at 8:07 p.m. and our flight was boarding one terminal over, we made a last minute decision that I would run and try to hold the plane. I never regretted that extra Bloody Mary (or two) more than in that moment.

As I ran off the plane I was asking the gate attendant who was running in front of me if she could help. She said yes and hopped in front of her computer, I told her, “We’re on flight 965, can you hold it?”

She said: “I can’t hold it. It’s boarding now; your best bet is to run.”

As I started running, I heard on the overhead speakers: “Final boarding for Delta flight 965. All passengers please proceed to gate F-3 now.”

I ran. I had so many bags. I had so much tomato juice and vodka in me. I don’t work out. And every time I had to walk, I felt like I was failing my family. I have to make it. Failure is NOT an option. I kept repeating to myself, ”You have to make it! YOU HAVE TO MAKE IT!

I saw the gate and I breathlessly and pathetically asked: “Did I make it? Can we get on this plane? I have to get on this plane and my child has special needs and I will die if we can’t get on this plane.”

The gate behind where you walk onto the gangway was closed. But was the plane door closed? It was not. A guy called from across the terminal, “Are you flying to Jackson Hole?”

“YES!!”

And when I looked up, Lauren was running with all the rolling suitcases behind her. And then I saw Rob briskly walking with Reagan. Rob told me he ran with Reagan, carrying her all through the airport while she said, “I’m tired, Daddy. Daddy my legs are tired. Daddy, you’re tired.”

We made our flight. We sat down, buckled up and they pushed back. Our flight to Salt Lake was 34 minutes and I feel like that’s how long it took me to catch my breath.

Jackson Hole is beautiful. I am so thankful to have an extra set of hands here so we can try to enjoy ourselves — it helps so much. It allows Rob and I to reset, take a break, be a couple and then be better at parenting Reagan. Gosh, we need that so much. Having an extra person who knows Reagan and our family so well allows us margin.

Margin is so crucial in life, even more so with families who have children with special needs. And I think that is what bothered me so much about the mean looks from the lady on the plane. She has no idea. None. I typed up something on my phone that I wanted to write down and hand to her that gave an explanation as to what she was witnessing, which was only a snippet of our life. She has no idea that the fact that we go on vacation is a miracle in and of itself. I wanted to explain. I wanted to educate, but I didn’t. Instead, I tried to think of her as someone’s mom or grandmother who just doesn’t understand.

And Reagan calmed down and was a dream the rest of the flight, because we made the decision that Rob would sit next to her, in the middle seat. Rob was so uncomfortable and hot, but Reagan was perfect. And Lauren became our bartender.

This flight is one of our greatest memories and stories from a vacation ever. Every time we think about it we can’t stop laughing.

And it was still hard and it required pushing through a really horrible previous vacation and a rough take off, but this memory, it is one of my absolute favorites. It hasn’t been smooth this entire time, but is anything ever smooth and perfect? No. But I’m so glad to be here with Rob and Reagan and Lauren, and my California family.