On the road with heart -- part 1

To read the inspiration behind this adventure, read this post!

I’m pretty sure everyone thought I was a lunatic when I said I was going to drive around the country with two little boys on an 18-day adventure. A common response was, “Ohh! That sounds...like a lot of work.” One person said, “I don’t know whether you’re brave or…” I’m pretty sure “stupid” was supposed to come next. I appreciated when people reacted with excitement because I was excited about it. I love adventure and I couldn’t wait to create these memories with my two little boys and all of the awesome families I was so ready to meet.

In the days leading up to the trip I felt some fear about not having Dan with us for the majority of the trip. A handful of times I doubted whether or not I could actually pull it off. If the nay-sayers would be right. Maybe I was stupid for thinking it could happen.

But deep down, I knew it was going to happen. I knew I could do it. I was beyond excited. I felt prepared. I prayed a lot about our safety and about my old car and about the families we were going to meet and the experiences we were going to have.

I did not sleep well the night before the trip. This was expected, but I was really tired the morning we departed for our big adventure. Thankfully Dan was coming along for the first few hundred miles, so I counted on getting some rest in the car.

We started the trip off with a bang. We drove through rush hour traffic and torrential rain to get to our first stop, which was only 25 miles from home. Five miles from home I realized that we had forgotten Elijah’s croup meds, so we had to turn around. This was another thing I had prayed a lot about. Croup. Elijah’s croup can be severe, and I really did not like the idea of him having an episode away from home. Thankfully, that prayer was answered, but it was reassuring to have the meds with us. Just in case.

STOP 1 – Saint Paul Park, Minnesota

STATES DRIVEN THROUGH: Minnesota (1 total)

MILES FROM PREVIOUS STOP: 37.6

TOTAL MILES DRIVEN: 37.6

PEOPLE VISITED: Eli (HEART KID #1), Megan, Dave, Noah

Megan and I met in 2011 through a mutual friend. She is the only heart mom from this journey that I did not meet through my blog. Eli and Elijah had open heart surgeries within a month of each other in the same hospital and by the same surgeon, so Megan and I took turns being hospital support for one another during those times. We brought each other food, goodies and hugs when they were most needed. I was always happy to see Megan’s smile, whether it was to visit her and Eli or when she visited us. She is an extremely kind and warm person, and I love being around her. Eli is a friendly and tough little guy, and we think the world of his amazing family!

Megan and Dave were very kind the morning of our visit. They knew we had a long day of traveling ahead, so they had breakfast waiting for us when we arrived at their house. The boys gobbled down bacon and pancakes with sprinkles! Lucky boys.

After breakfast, the boys played while the storm quieted down outside. Eli very excitedly shared with me which articles of clothing went into which of his dresser drawers, which I thought was super cute. He showed us his backpack and his bunk bed and the toys in his bedroom.

Sadly, we were not able to stay for long. Once the rain had passed, we were on our way to the next stop and the last stop that Dan would be with us for.

Stretching our legs somewhere in Wisconsin

The drive to Milwaukee was uneventful. The boys and I got some rest in the car and I managed to get some work done while Dan drove.

One thing I didn’t want to do on this journey was impose on anyone. I didn’t want the families we visited to feel like they were obligated to house and feed us. My main goal for the trip was to just meet these wonderful families I had grown to love from afar. I expressed this specific worry to Dan a few times before the trip took place and every time he would say back to me, “Think about what you would do for them if they were coming here.” That helped me not to feel like we were burdening people. 

Heart mom Kerry was honest with me about not having the space for us in her home, which was totally fine. Getting a hotel on this leg of our journey worked out extremely well since it was our only and last night with Dan. Having some family alone time that last night on the road together was necessary for all of us, I think.

I love the total opposing expressions on the boys' faces

We checked into our Red Roof Inn room and got the boys’ beds set up before heading over to Kerry and Ruby’s super cute home. Elijah was beyond excited to be staying in a hotel. “This is the biggest, most beautiful room EVER, Mom!” I’m glad he was impressed.

STOP 2 – West Allis, Wisconsin

STATES DRIVEN THROUGH: Minnesota, Wisconsin (2 total)

MILES FROM PREVIOUS STOP: 372.2

TOTAL MILES DRIVEN: 409.8

PEOPLE VISITED: Ruby (HEART KID #2), Kerry

You will recognize a few themes as our story unfolds, one of them being the absolute and total specialness, uniqueness and friendliness of every single one of these heart kiddos. Ruby was no exception. There is no possible way to convey the sweetness and cuteness of this little girl in words. Meeting her was one of the most awesome parts of our trip, in all honesty. Her sweet voice and the cute words she spoke and the way she loved her guinea pig a little too much and how she always wanted to be sitting on Dan’s lap. All of it was a complete awesome joy to be around.

Kerry’s love for Ruby was evident and very genuine and sweet, and vice versa. They have a special bond and Kerry is one amazing mama. She also makes an incredible Chana Masala.

One of the main reasons I wanted to take this trip was to have the opportunity to connect with families that have walked similar paths as ours. There are little things about being Elijah’s mama that make me feel misunderstood when I’m in the presence of parents of healthy children. I do not place any blame on others for this. If you haven’t walked our path, then of course you wouldn’t understand why Elijah will not put a raspberry or piece of broccoli into his mouth or why he is still being potty trained at age six or why he has four-year-old tantrums. I don’t expect understanding from people who haven’t walked in our shoes, but sometimes it becomes tiring having to constantly explain why why why.

Within the first few minutes of spending time with the amazing Ruby, I knew we were in what I call understanding territory. You will hear me speak more about this as our journey plays out. Some of the little things that set Elijah apart from his peers are things that he and Ruby have in common. Both of them prefer very specific flavors and textures in regards to food. Kerry did not find it weird that I wasn’t even going to try to make Elijah eat her delicious Indian dish. It wouldn’t have happened and I didn’t want to waste her food. She got it.

Ruby had an awesome playroom that the boys adored. They kept busy with her fun toys. Elijah’s favorite was the penguin slide and Sammy liked the giant piano. Kerry and I had a few minutes to chat while we ate. She is one strong, amazing mama and I am grateful to have been able to spend time with her and her awesome little Ruby who likes teeny tiny toys.

I stayed up way too late that night, lying in our hotel bed and worrying about what life on the road would be like without Dan. I felt a ridiculous level of tiredness in the early morning hours and began considering driving back home and scratching the whole plan. If I was so tired at that point, what would I feel like two weeks (literally) down the road?



Needless to say, I did not drive back home. The trip was meant to happen. The next morning we had a little bit of time to spare before dropping Dan off at Chicago O’Hare airport. We drove to the shores of Lake Michigan and spent some time with our feet in the sand and water. Sammy became very brave, very quickly. We had to stop him from walking straight into the lake a few different times, which was a complete surprise. He tends to be our hesitant one.

The boys played at a park by the lake while Dan and I took turns gazing out into the open water (this is a favorite and calming thing for both of us). 

Lots of Lake Michigan pics to follow..

After our time at Lake Michigan, we drove a few miles down the road to the Mars Cheese Castle. I had found this place in a travel book, and it seemed way cooler in the book than it actually was. It was basically a store that sold cheese and that was also shaped like a castle. The boys were not disappointed, and that’s what matters.

Leaving the cheese castle was the point in time when I started fighting back tears. I did not want Dan to leave us. We decided to squeeze in one last stop before heading to the airport--Superdawg drive-in restaurant. Dan and I shared a super delicious and gooey-toppinged hot dog and the boys ate fries and grilled cheese sandwiches. It was a fun experience, and we all got a kick out of the hot dogs that stood atop the restaurant.

And off we went to the airport. I couldn’t hold back the tears any longer. Dan gave me a good-bye hug and I cried. Hard. I will never forget the sad look on his face as I walked back to the car and as he walked into the airport. I got into the car and as I sobbed into my hands, the boys both asked me, “What’s wrong, Mama? Why are you sad?” I told them I missed Daddy. They both had great responses that I will never forget. Elijah said, “It’s ok, Mama! You’ll get to see him in two weeks!” Sammy said, “Do you want me to read you a book, Mama?” I love my boys.

The drive through Illinois was a sad one. There were two things I found particularly frustrating, amidst the gloominess: the constant stopping to pay tolls while digging for change and dollar bills in my purse and the insane amount of very packed lanes of traffic on the interstate. I did my share of silent swearing along that stretch.

Our drive into Indiana was uneventful, but our drive into Fort Wayne became a little bit more eventful. In my sad and distracted state, I hadn’t noticed that there was not an exact address typed into my GPS. Siri directed me to the inner city of Fort Wayne, where things were a little bit questionable. I kept thinking, “Could Amber really live here?!” I called Amber and she definitely did not live there. She kindly got into her car, met us in a safe neighborhood and led us to her home.

Having just driven through some rough 'hoods that we were thinking might be Amber’s, the boys were very relieved upon seeing her actual neighborhood. A few blocks away from her home, Elijah said, “Look, Mom! Amber is taking us to her KINGDOM!” 

STOP 3 – Fort Wayne, Indiana

STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana (4 total)

MILES FROM PREVIOUS STOP: 327.5

TOTAL MILES DRIVEN: 737.3

PEOPLE VISITED: Grace (HEART KID #3), Amber, Michael, Jacob, Emma, Caleb, Noah

Upon our arrival in Amber’s kingdom, we were greeted by the smiliest, sweetest little Gracie. I had read about Grace for years through her mama’s blog and I had fallen in love with her. I was instantly even more in love with her upon seeing her sweet face. That super special friendliness I talked about with Ruby and Eli was evident with Gracie within literally two seconds. We were given tons of hugs, and Elijah was immediately escorted away to play. “Come with me, my friend!” Gracie said over and over. It was the cutest thing.

It wasn’t only Grace that I had fallen in love with years prior. I had fallen in love with her mama, too. She is a very special person, with a great big heart filled with tons of love. She and her husband have fostered dozens of children and have huge hearts that desire to help those in need. Two of their five children are adopted and have significant medical needs. All of their five children are incredible people. Their home is a busy one. Good busy. People were coming and going amidst the love that filled their walls.

The boys loved the action. Within those first few hours, the four little ones could be found playing chase or hide and seek. Four-year-old Jacob is a little lovebug and I fell in love with him instantly, as well. He gave me tons of hugs and I was impressed with his ability to remember all of our names impeccably.

Elijah and Grace loved playing dress-up together, which was just adorable. Grace named herself Cinderella and Elijah was the Prince. This was seriously the cutest and sweetest thing I have ever seen.

We spent a relaxing evening together that first night, which involved an early bedtime and sleep in a cool, dark basement (our favorite).

The next day we, along with Amber and four of her crew, had planned to meet another heart mama, Krista, and her two boys, Seth and Grant, at the Fort Wayne zoo. Krista is another mom I had connected with years before through blogland. Her sweet baby Kate entered the gates of heaven far too soon, and the rest of us mamas have hurt so badly for Krista and her aching heart over the years. Before we began the trip, I talked extensively with Elijah about all of the kids we would meet on this journey. We went over names, families, states they lived in, what they all had endured medically, etc. I had explained beforehand that Kate was in heaven and that we would be meeting her mom and brothers. It was difficult for him to comprehend and he asked many questions about Kate.

STOP 4 – Fort Wayne, Indiana

PEOPLE VISITED: Angel Kate (HEART KID #4), Krista, Seth, Grant

It felt fantastic to hug Krista after so many years of wanting to wrap my arms around her. She is an extremely kind and warm woman. In memory and honor of their precious Kate, she and her husband have started a book donation organization that involves giving new books to children in hospitals. Kate’s Kart is currently in sixteen hospitals and their organization is doing amazing things! I am so proud of the way Krista and Andy have turned a very unfortunate circumstance into something incredibly generous and inspiring.

The zoo that day was fun, although very crowded. Mostly it was just nice to meet Krista and her two cute boys and get to know them before parting ways.

Sammy grew attached to one goat and followed him around literally the entire time we were at the petting zoo

One of the zoo highlights was the fun ride on the boat with my boys

I just barely managed to get the boys back to Amber’s house for a late, short nap after our trip to the zoo. Both boys were in rare form and hadn’t had a proper nap in days. When they woke up, we decided to take advantage of the pool just down the street from Amber’s home.

More dress-up time

I did not do my prep work well that evening prior to swimming, and I learned a huge lesson from it to carry with me on the rest of our journey. Being in the pool is Elijah’s favorite thing in the world. Period. Although he is not technically a swimmer, he could stay in the pool for as long as I allowed him to be there. He was beyond excited to get into the pool, and loved splish-splashing around with Amber ("the best swim teacher ever!"). I was on the sidelines with Sammy, as was expected. Sammy loves the water, too, but needs a lot of warming up.

I gave Elijah a five-minute warning about getting out of the pool, but that wasn’t good enough. I witnessed some of the worst behavior I have ever seen from him upon getting out (until Louisiana). Mostly it made me sad. I got my first “I hate you, Mom.” That stung. I strangely was not embarrassed by any of it. Again, we were in understanding territory, so it didn’t occur to me to be anything but sad and a little bit mad.

I know that if Elijah wouldn’t have been so tired and if I would have prepped him better, he would have left the pool with a good attitude. There is evidence of this later on in the trip.

We ate pizza at Amber’s house that evening and I put the boys to bed immediately after. Amber and I were able to squeeze in a chat before heading to bed ourselves. It was very nice to get to know this amazing heart mama on a deeper level.

Before we arrived in Fort Wayne and after I had insisted that Amber not buy us any special foods, she had looked through the photos on our blog to see what the boys enjoyed eating. I love that she did this. She is awesome. When we arrived, she showed us the shelf in her pantry that had been designated as the Porta shelf. She had seen the boys eating drumstick ice cream cones in one of our photos, so she had these in her freezer for them, as well.

Since I had rushed to get the boys in bed so soon after our pool breakdown and after dinner, we didn't have time to break out the drumsticks! So, of course, it made perfect sense to eat them for breakfast the next morning. The boys, along with Grace and Jacob, thought this was the coolest breakfast ever.

It was incredibly sad to say good-bye to Grace and her amazing family. We totally fell in love with this family. Driving away from their home was one of the saddest parts of our trip.

READ THE SECOND PART OF OUR ADVENTURE HERE!