Tuesday, July 30, 2013

Heart camp happiness

Here is a sweet video of Sammy greeting Elijah as we picked him up from Heart Camp today. He loves his bro so much (and vice versa)! Camp seems to be going well. Elijah doesn't seem to be connecting with kids yet, but I am still hopeful and I pray for this to happen at least twelve times every hour.

Trip tales coming soon!

Saturday, July 27, 2013

Road Trip 2013

Here's the short version, until I have time to post a detailed account of our trip..

18 days
16 states
75 people (from 17 families) visited
3,803 total miles driven in my old yet trusty Toyota Camry

Things were not always easy along the way, but this was an incredible and unforgettable experience. I'm thankful for the memories I made with my boys and with all of the amazing people we met. The connections we made will last a lifetime! Every single person inspired, encouraged or positively affected me in some way or another. We encountered more love, kindness and generosity than I ever expected and our hearts are feeling very full right now. 

Sunday, July 7, 2013

On the Road with HEART-2013 edition

It was at my routine 20-week ultrasound that Dan and I found out something was wrong with Elijah's heart. I will never forget sobbing on our living room couch, Dan's arms wrapped around me, wondering what was in store for our precious unborn baby boy. It was one of my saddest, scariest moments.

I scoured the internet for information and support. I found a lot of really scary things, but I also discovered some awesome blogs that were written by parents walking very similar paths as ours. They, too, were scared, uncertain, wanting to understand and wanting to be understood.

In the years that followed, as Elijah's story unfolded and as he accumulated more surgeries and time in the hospital, my connections with my fellow heart parents grew stronger. My love for them and their precious heart kids grew, as well, as they endured similar experiences as our family. My heart broke for all of them because I knew the pain. And I know their hearts broke for us, too, when we were the ones in the trenches.

These people, most of whom I have not yet met, have supported and loved our family through some of our darkest times. In many ways, I feel like I am closer to them than anyone else because of the uniqueness of the experiences we have endured "together." There is an intensity in the tears we have all shed for and with one another. Tears of happiness and sadness and relief and anger and pain and uncertainty and joy and frustration. That intensity, I believe, is extremely unique and bonds us closely together.

I would not be the mom, or even the person, I am today without these heart parents and their awesome kids, who have encouraged me and inspired me over the years beyond anything words could ever explain.

And so, I am packing up my own heart kid and his sweet little bro, and I am driving to the doorsteps of (the eastern sector of) these awesome families. I hope they are ready for hugs, and maybe a few tears. And I hope they know what amazing things they have all done for me over the past seven years.

Saturday, July 6, 2013

4th of July 2013

Whew! I'm trying to get caught up before our trip, so things have been busy! Most of the time my nose is in my computer while the boys play. Or fight. :) I keep apologizing to them and promising that for the next three weeks I'll hardly have my computer open at all.

We had an awesome 4th of July. It was the first time we took our boys to see fireworks! Dan had the day off, so we were all able to spend the day together. It was an awesome day. There is nothing better than seeing smiles on these two little boys' faces. We started the day off with some outside pool/sprinkler play-time. Then we headed to Grandma's for dinner and hammocking and sparklers. Then it was off to Round Lake to enjoy festivities. Bouncy houses and face painting and ice cream and fireworks. The boys...ok, we were ALL...exhausted by midnight. Honestly, I don't think the boys have ever stayed up that late. It was definitely a treat for all of us, but well worth the sleep lost.

I'll post some favorite 4th photos below! Enjoy!

I have one more post coming before we leave for our trip on Tuesday morning. After that, I likely will not have a chance to post here until after we get back (July 26th). When we are home, I will compile a huge post with photos and details. If you want to follow our daily trip details, find me on Facebook. I believe anyone can peek at my timeline. I'm under Megan Weiss Porta.

I hope you all had a wonderful holiday!

Monday, July 1, 2013


These two cute boys had an awesome weekend. We celebrated a very good friend's birthday and Elijah was on cloud nine about the bouncy house and kiddie pools and ice cream. Sammy loved the ice cream, too. 

We made it to the pool today and had a super fun time. Elijah of course experienced pure bliss. He LOVES being in the water. It took me two hours to talk Sammy into getting into the water. Once he got in, he adored it.

I shed a few tears behind my sunglasses at the pool today. Elijah has such tormented interactions with other boys his age. I can always see exactly what's going on, while he becomes confused and starts talking gibberish. The other boys become confused, too, when he doesn't respond the way they anticipate. Today a boy his age approached him and Elijah actually looked at me and said, "WOW!" Most boys his age do not give him the time of day due to his gross motor disadvantage. :( This boy kept urging him to come and be crazy and swim with him! Well... E just can't! He physically just cannot do it. So he turned back toward me and looked at me like, "MOM! What do I do?!" The boy came up to him and started saying things that did not make sense to Elijah. He was talking about venom and antidotes and concepts Elijah has never considered. Elijah was confused. Then.....the boy looked long and hard at E's scar. He stopped and stared for a long time. Then he looked at me. And swam away. And never came back. :(

Elijah doesn't yet understand that his scar, and that the MEANING of his awesome scar differentiates him from his peers. In one way I love this and in another way I hate this. I want him to know that he is just as awesome and cool as his peers, but I also want him to know that he has such amazing strength! It's difficult to explain.

This is a huge reason why we are going on our summer road trip. We will be connecting with families in a way that only heart families understand. We cannot wait for our big trip. We'll be leaving a week from tomorrow!

We have a busy week ahead, preparing for our big trip plus dealing with "normal" life details and planning ahead, as well. It will all get done! Right?! Have a great week, everyone!