10 months without our firecracker

It’s been a while since I’ve written. All of you have stood by our side and encouraged us to continue to share our story and have allowed me to shed my heart and be raw. Thank you for continuing to show up and giving us this place to heal. Writing was once an outlet for me at the end of the long day to share our victories, thank God for the milestones and plead for prayers from all of you that our son would receive the miracle of healing. Friday marked 10 months since Owen went Home to Heaven and I find myself in an emotional turmoil. As I feel the weight of 10 very long months without Owen I also feel the anticipation, fear, and joy of 40 days until we hold our second son in our arms. As I’ve stated before it’s a lot to carry especially when you’re just trying to function in society with a barrage of third trimester hormones! God bless my husband for riding this roller coaster and laughing with me. He has encouraged me to start writing again so, here I am showing up with all of you… Broken, tired, huge, and kind of like a Fourth of July firework display!


Fourth of July 2013, my Dad (PeePaw) and Stepmom (Nan) were traveling from the east coast to meet their grandson for the first time. Owen was on the road to extubation and I was thrilled that they would get to see him without all of that tape all over his face. Jeff had gone back to work for a few short days at the beginning of that week and was desperately missing his wife and son but was thrilled at the prospect that Owen was on the upswing and we were headed toward the “h” word (home). I spent the days with Owen in my arms, studying every angle of his precious self and “planning” our first Fourth of July together. I couldn’t wait to celebrate this holiday with him. After all he had been my biggest surprise firework yet. Owen was fast asleep napping so I took the opportunity to race to Party City to get all the things one would need to give their son the best first Fourth of July celebration ever! I quickly returned and started planning out every detail, of course, when I wasn’t lost in awe staring at my tiny miracle. Then it was time to decorate! At one point I thought I may get in trouble with the nurses due to all of his lines and the oxygen I was carefully relocating for my decorations, but they allowed all of my antics. I may have gone a little rogue because Owen may or may not have gotten lost in my “Macy’s day parade” float! However, when it was done it was a hit and I felt like the crafty Mom I love to be! I will never forget the look on the Attending’s face when she came in to check vitals to start rounds. For a moment in those ICU walls we all celebrated our freedom, prayed for Owen’s freedom and forgot about milestones needing to be reached and obstacles needing to be overcame. We celebrated the day and most of all we celebrated another day with Owen.

Not surprisingly Nan and PeePaw fell head over heels for their grandson the second they met him and they enjoyed an incredible time visiting and getting to know him. Owen had an instant bond with his PeePaw and reached up to grab his finger out of a deep sleep. My heart melted at how many times they would hold hands together in the future. Working on his old car, discovering things in the woods in Vermont, chopping down firewood, and I’m sure my dad would have been the one to give him his first beer! They chuckled at the grand Fourth of July display I had created but were also thrilled that I did not let the hospital walls stop me from being me and giving our son an “outside” perspective.

Unfortunately, I think Owen was too excited to meet his Nan and PeePaw and he did not get extubated until they had left and their plane took off to take them back to Vermont. That was the first and last time they would see their first grandson alive. Typing those words shatter my heart and I think about how much was taken from each member of our family when Owen went to live in Heaven. We are all thankful that he is no longer here in pain and fighting a body that failed him from the second it started to grow but in the same breath we miss every second with him and witnessing the tiny miracles that God graced us with by giving us Owen for 112 days.

God continues to grace us with Owen even though he is not physically here. I remind myself to see him in each and everything. In sunrises and sunsets, tiny butterflies that visit me each day, lions that I find randomly in my travels and some that I had walked passed a million times have so much more meaning now. Most of all, I see him each time I feel his brother kick and grow inside my belly. Brody is truly a gift from God and he has brought us a healing that I do not know would have been possible without him.

I have struggled with sharing about Brody because this blog was created and centered around Owen, his CHDs, childhood cancer, and grieving the loss of a child. The blog and website were designed to educate, draw awareness, and assist other families as they embarked on this journey. Jeff and I have talked a lot about allowing Brody to have his own identity and finding that balance. Just like we never wanted Owen’s conditions to define him, we don’t want Owen’s conditions to define Brody either. But at the end of the day, Brody was gifted to us by his brother and Brody will know his brother! And we want all of you to know Brody too! It is part of our grieving process and I know sharing the journey of welcoming our “rainbow baby” (the term that is often used for the baby following an infant loss) can help many families. As John Lennon said, “we were busy making plans when life got in the way”. So, hang on… we are all about to embark in another wild adventure!

And you don’t want to miss out on the fun things coming from LionHeart Owen this fall! Owen’s one year celebration in Heaven is happening September 4, 2014, which is also the launching date of the 2nd Annual LionHeart Owen Book Drive, October 4, 2014 we will be walking again with 2014 OC Walk to Remember, a Forever Footprints event honoring and remembering all of our babies who have left us too soon, and in November will be hosting the 2nd Annual LionHeart Owen Bunco Night! We will be updating the website and the blog in the coming months and making it much more user-friendly! Stay tuned for details and feel free to email us should you want any more information or would like to participate in any of the above events.