I apologize it’s taken me so long to actually write. The truth is life has been hard and it has been even harder to be raw and real with everyone because now we are forced to live in “real” life. When we lived in the hospital we were all protected. I was too busy with Owen and doctors and could rarely answer the phone. We also rarely had visitors because we were so afraid of Owen getting sick causing us to stay there a little longer and causing him any additional pain. I could hide in the hospital, behind my writing and could read everyone’s comments and nightly get encouragement without having to speak to anyone. No one had to see the tears or the occasional laughter. I didn’t have to worry about making anyone uncomfortable or hurting any feelings. I could just be and that was ok.
Now we are home fighting an entirely new battle out in the open. We are fighting for the children and families that are battling CHDs. We are fighting our grief and learning how to live back in society with all the things that we have seen and all the things we had to endure alongside Owen. We are fighting so no other family has to hear the helpless and definitive words of “there is nothing else we can do” and then watch their son slip away. In our eyes that sentence is simply unacceptable and it is what harbors sleepless nights and the myriad of questions.
I was recently watching a 60 minutes or 20/20 piece on Post Traumatic Stress Disorder (PTSD). The piece was about individuals who have fought in Iraq, some for multiple stays and are now back in the states trying to assimilate back into their ordinary life. They were asked about their time there and many of them cried or became speechless. Those who did speak often times said that there are very few that can truly understand. When asked if they would return to war all of the individuals raised their hands and said yes. When asked why. They said that it is the only place that people can relate to what they saw and endured. I found myself watching this piece and feeling like I could relate to all of those feelings in our 16 weeks at CHLA. (Disclaimer… I have never been to war and no members of my family are or have been in active duty in Iraq. If my ignorance on what “war” is like offends anyone I greatly apologize. I only know what I know from the tv/movies and after being in the hospital and seeing hospital scenes in the tv/movies I can only imagine they are VERY VERY different! But please bear with me.) The hospital and the people at CHLA are amazing and it absolutely is not war conditions. The staff knows and witnessed what it was like for us. They know Owen’s condition forward and back. They were there to witness us as hands-on parents and they were there when at just 16 weeks old we told him it was okay to go be in the arms of Jesus. Very few people outside of CHLA can share our story. Very few people fought every day their child was in their belly and it only intensified when he entered this world. Very few people mark milestones of their child’s life with the day he came off the ventilator, the day of his first and then his second open heart surgery, the day we discovered he had a neuroblastoma tumor, the day he gained his angel wings and was gone from our arms forever. Our view of what it is like to be first time parents is skewed. Very few can relate and we would never ask anyone to try. It is much like those military warriors, they fight with everything they have for our country and then come back to live in it and feel lost and confused. We fought with everything we had for a life to live here and he was asked to go home. Now we have to learn to live in this life that we fought for him to stay in, without him in it.
This is why we are spending so much time carrying on Owen’s legacy through the LionHeart Owen Foundation. This is why everyday I go through pictures of our son and never allow him to leave my mind. There are so many families like ours that feel alone in their grief or feel alone battling each day and celebrating their “new” and foreign milestones. Grief is not only with those of us whose babies are in Heaven, grief is also with each mom and dad whose child has a special heart and each and every day is a gift. Grief is in the hearts of moms and dads whose child is on the countdown to the next heart surgery, whose child is having difficulty breathing due to the common cold and that could mean a trip to the ICU, grief is in the hearts of moms and dads whose vision of parenting is being played out much different with doctors and nurses as their “best supporting actors”. I recently spoke to a heart mom whose baby finally went an entire day without throwing up. She is tube fed and this has always been a struggle for her. This is huge and such a great accomplishment for her family. However, she was in tears because she spent the day with a friend who unintentionally spent their entire visit asking why her daughter hadn’t rolled over yet and why she isn’t progressing on baby food, etc. She was heartbroken that her precious angel was being compared to a typical developing baby achieving milestones that would take her little one some time to catch up to.
This world of being a heart mom makes life different forever. I am just barely scratching the surface on it and thank you for being with us as it grows. We will be making some big changes to the website and launching many exciting things with the Foundation in 2014. We always envisioned having resources and support for families on this journey and also resources for family and friends that are trying their best to understand. Thank you for being with us as we navigate them and celebrate Owen’s milestones in this way. If you are looking for support or know someone that is please private message me and we will connect them to people in their area that can help. Together we can make a difference.
Be kind for everyone you meet is fighting a hard battle…