Today I find myself face to face with Wednesday, AGAIN! I petitioned God for a lifetime without Wednesdays but he clearly has shown me that all the Hump Day lovers out there overruled me! And since I can’t get rid of them I have tried something new and I think I may be on to something. I was praying the last few days for God to show me he is here and show me that he is taking care of our sweet baby boy. Sometimes in the midst of all of the chaos and “life” we have been living I find myself caught somewhere between faith and doubt. When I am on Team Doubt Wednesdays flat out stink! God apparently was not too thrilled with the amount of time I have been spending on Team Doubt and has been shouting from the rooftops “I AM HERE AND I GOT HIM!!! STOP WORRYING!!! CHECK OUT JEREMIAH 29:11, AGAIN! SHEESH!” Ok, maybe he hasn’t been that loud but short of sending carrier pigeons, I can say THANK YOU God for answering this prayer exactly the way I needed it. The incredible angels disguised as friends, fellow heart moms and clients have boldly told us that you are here. This Wednesday, I woke up on Team Faith!
Today is 8 weeks since Owen passed away. You would think that it would be tough for us. But, the truth of the matter is EVERY day is tough for us. Every day is like the first 24 hours after he went to Heaven. I switched gears and instead of thinking what life is like without Owen, I reflected on what life was like WITH Owen at 8 weeks. You will all remember this day vividly (if you’re new around here click here for the post), Owen’s heart brutha, Evan was one-day post heart transplant and Owen was geared up for extubation. This would be one weekaversary for the books! Our son was climbing a huge mountain and victory was about to be his! Evan was extubated and was doing well and Owen was supposed to share in this victory with his heart brutha. But, we all know Owen and he was not about to share this milestone. He did things his own way and still does! We spent all that day in prayer and hope that our son would take his first unassisted breath and we would hear him cry for the first time. I think of the strength and the faith the three of us had in that room that day. I dig deep for this strength again and it empowers me to fight for Wednesdays. Owen climbed mountains every day of his life. Now he is MOVING Mountains and we’re here on earth to help him!
When we were in the hospital we got Owen, “Oh the Places You’ll Go” by Dr. Suess. We would read it to him every week on Wednesday. When he was ready to be transferred to CVAcute and onward and upward to home we asked his attendings, fellows, nurses, respiratory therapists, and any professional that helped heal our son to write to him about his time in the hospital. We were concerned that when Owen grew up he would think of his first few months of life as sad, dark, and dreary stuck in the hospital. We wanted him to get a glimpse of some of the amazing people that he spent time with every day. It became his CHLA Heart Institute yearbook. The book continued to be filled with heartfelt messages as we spent time in CVAcute, went back to the CTICU, returned to CVAcute, back to CTICU, and so on. There were several medical personnel that signed the book after Owen had passed. This book has become the most treasured keepsake of our son. The book contains firsthand how our tiny miracle changed the lives of staff at CHLA while changing lives around the world. Our favorite line from the book is “And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed) Kid, you’ll move mountains!” It’s nice to know he was listening to us at such a young age!
Grief has given me a heart of gratitude. I am grateful that Owen was diagnosed inutero. I am thankful that the staff at CHLA welcomed us with open arms. I am thankful for the cardiothoracic surgical genius that Dr. Starnes is. I am thankful that the team was ready when Owen was born and supported him when he was born not breathing. I am thankful for the nurses, doctors, and specialists that tirelessly took care of our son. I am thankful for our Mother and Father intuition and the times it saved Owen. I am thankful for our family for sticking by our side. I am thankful for the heart mom’s that cried with us, laughed with us and were raw with us. I am thankful for our heart family and the tremendous support and love you have all shown our family! I am thankful that we got Owen on this earth for 16 weeks. I am thankful for the way his life and death has forever changed me.
Our hearts swell with pride each time we receive a story from one of our heart family members on how Owen has touched their lives. Currently, LionHeart Owen has over 4,300 followers on Facebook and our blog is followed in 81 countries! We pray that as time moves forward, Owen’s love and joy for life will be remembered as vividly as it is today and our heart family will continue to grow. The Foundation has been great therapy for Jeff and me as we grieve the loss of our courageous lion. Lionheart Owen Foundation (LHO) is being established in Owen’s name to continue the fight against CHDs and carry on his legacy. Upon Owen’s diagnosis, we were left in the dark and sent out blind to fight a fight we knew nothing about. But now armed with knowledge and a lifetime of experience, we can’t sit back and allow other families to navigate the waters or feel like they are raising their special miracles alone. LHO pledges to raise awareness, develop and disseminate educational material to the public relating to CHDs and support children, families, caregivers, and medical personnel impacted by CHDs.
When we first started this journey, we told everyone, “We are not sure how this all will play out but we’re going to do our best to take it one day at a time” and that is what we have done. None of us could have imagined that this would be God’s plan for our son and our family. We do not feel blessed for our circumstances but we feel incredibly blessed for knowing Owen and knowing all of you! We feel blessed that a tiny boy, without a voice, has changed so many hearts all around the world. That little man had the power to inspire and move people in a way that you and I could only dream of doing. He is our miracle and we feel blessed to share him with you and share our story. You have all ridden the ride with us and have held our hearts for every high and every low. For that we are forever grateful and that knowledge makes each day… even Wednesday… just a little easier!