Owen's First Birthday

Dear Owen,

Today would have been your first birthday. I can hardly believe a whole year has past since you were born. I never knew my heart could feel as much love as it did when I met you. The day you were born was such an exciting day. We had waited so long for your arrival. You were in no rush to get here, but it was the perfect timing. I'll never forget looking into your eyes for the first time. You were here, you were perfect, and you were mine. How could I love someone so instantaneously and so passionately? I didn't want to put you down. You made the cutest noises and had the sweetest smell. Daddy and I would touch our faces to your skin just to feel how soft you were. We had such great dreams of what your life would be. 

God had different plans for your life than we did. We didn't want you to be sick. We didn't want to learn about heart defects and ventilator settings and blood gases and surgical procedures. We didn't want you to live in the hospital. We didn't want you to be hooked up to a dozen medications or be intubated or go through heart surgeries. We didn't want to not be able to hold you for weeks at a time. We didn't want you to live your life in the CICU and be poked and prodded all day every day. We didn't want you to die. Our plans were not God's plans, and that is hard.

Even though your life was not what we dreamed of, it was beautiful. You made an impact, sweet boy, and you touched so many. You lived a full life and filled my heart in a way I never could have imagined. I loved our days together looking into each others' eyes and holding hands. You had such an old soul. It was like you knew exactly what was happening and were telling me it would all be okay. I loved our time reading together and listening to music. I love that you were known as the cute baby on the floor. I loved that nurses fought over you and wanted to take care of you. I loved whispering to you and talking to you. I told you how popular you were and that you had so many friends who couldn't wait to meet you. I told you about the things we would do together when we would bring you home. I told you all about your nursery that was at home waiting for you. I told you that I would never put you down. I never would have put you down. 

Oh, how I wish you were here and that we were throwing a big birthday party! Today was still a celebration! Your friends and family donated hundreds of blankets and books and in your honor. We were able to give them to the families in the CICU, hoping they would bring them some joy. We collected more than we ever dreamed we would, and it was all for you. We made cupcakes and passed them out to some of your biggest fans. You have brought so many people together. Everyone was celebrating you today! Your life is huge, and it is powerful. It is a story of hope and a reminder that we are not made for this world. We are made to live in heaven for eternity at the feet of Jesus. You are already there, and I can't wait to join you. Thank you for giving me that gift! A perspective I may never have had if I had not had you as my son. I loved celebrating you today. My heart is filled with so much love for you. I just love you, Owen. I miss you so, so very much. Happy first birthday, baby boy! 

Love, 

Mommy

For two months we collected, sorted through, and packaged all of the beautiful blankets and books we received for the book and blanket drive! It was so nice for me to be able to devote energy to this project since I couldn't plan a first birthday party for Owen. I loved putting blankets together, matching them with books, and packaging them beautifully.

 This is the note that was included in each package.

To everyone who was a part of this project, thank you!! We were blown away with all of the support we received with this project It wouldn't have been successful without you. We collected over 600 blankets and over 400 books. It was the perfect way to celebrate Owen today, and as much of a gift to us as it will be to the CICU families. With the help of family and friends, we delivered these bags to Egleston today on Owen's birthday.

The hospital staff was overwhelmed with joy and so touched with these gifts. They estimate that we have around a six month supply. Amazing

 We dropped off cupcakes too!

To all of the CICU staff, thank you for celebrating Owen with us today. Thank you for being so excited about he books and blankets and cupcakes. It was good for my heart. Thank you for taking time out of your busy day to talk to us and ask how we're doing. Thank you for remembering Owen with us. Not many people had the privilege of meeting him, but you did. Because of that, you are so dear to us, and we feel a connection with you that we don't feel with anyone else. Thank you for loving Owen and for taking such great care of him. Thank you for supporting us as parents and loving us so well. You may not think of Owen's story as a success story, but we do. You are all angels for doing what you do. 

I love this picture. It was talking with some of the staff in the lobby, and one of the nurses pointed and said, "Look at them celebrating Owen!" Brings tears to my eyes.

We ended the night releasing balloons to heaven with some close friends. It was the perfect ending to a special day.

Today we felt so much love, support, and peace. It was the best way we could have possibly spent Owen's birthday. Thank you so much to everyone who continues to shower us in prayers. It means so much.

spreading awareness

This is congenital heart disease. Looking at your four-week-old baby with such joy and relief after a 10 hour open heart surgery. Spending the whole day in the surgical waiting room on edge, waiting for the receptionist to call your name with an update every hour. Wondering when they don't call on the hour if something horribly wrong has happened. Saying goodbye to your baby that morning in the triage room surrounded by people in scrubs and masks, knowing very well it could be your last time. Looking at your son's open chest, and watching his heart beat. Thanking God for every beat of that heart. Wondering if he will remember this later in life. Wondering if he will get to experience life outside the hospital... Living for this moment alone. Locking eyes with your sweet baby boy, and thanking God for these minutes spent together.

Worrying about the future... and what life will be like for him with such a sick heart. Hoping for a cure and for healing. Wondering how many times you have left stroking his head and holding his hand. Wondering if you will ever be able to hold him again. Dreaming about hearing his voice and being woken up from his cry in the middle of the night. Fixating on monitors and waiting for blood gas results. Celebrating any ounce of pee in his catheter. Praying he doesn't have to go on ECMO. Praying he makes it through the night. Cherishing every single moment together. 

This is congenital heart disease. It is not pretty, but these babies and children are so strong. Their parents only strive to live up to their level of strength, fighting for them with all of their might. February is heart disease awareness month. Please spread Owen's story to others. Not many know that congenital heart disease is the most common birth defect. I certainly didn't know until Owen. It occurs in 1 out of every 100 births. Please spread Owen's story to raise awareness. Talking about it increases awareness which impacts research, increasing the chances for these children to live healthy, full lives. 

Respite Retreat

Right after we lost Owen, I read Holding Onto Hope, by Nancy Guthrie. Her words spoke to my aching soul in a way no other human could. In the book, she wrote about losing her daughter Hope and the grief that follows such a loss, but a grief filled with hope in the Lord. My cousin and his wife also lost their son Joseph six years ago. They know Nancy and her husband David and told us about the retreats they host every year for couples who have lost children. They attended one themselves, and said it was the best thing they did. After hearing that, I knew Brian and I needed to go. In January, we had the privilege of doing just that.

As the weekend approached, I became quite anxious about everything. The weeks prior to going had been another "dark patch" in my grieving process that didn't seem to be fading. I knew the weekend would stir up lots of really difficult memories and emotions. I was nervous about hearing others' stories and sharing our pain, not knowing what that would look like. The moment we walked into the door, my anxiety went away. Nancy Guthrie was there, greeted us by name and welcomed us in. We spent the weekend with eleven other couples, all who had lost children. I can't tell you how comforting it was to be surrounded by people who truly understand every single thought, worry, ache and pain that we feel. We were able to share Owen's story and listen to the stories of all the other beautiful children. You can imagine how emotional and difficult that was, but it really was good to listen, share, and be heard. When you meet others who have experienced this same loss, there is an instant connection. Those eleven other couples felt like family that weekend. There was lots of time for conversations and getting to know them better. Every thought they shared, I have also felt. We were able to encourage each other through dark moments we have faced or will be facing.

One thing Nancy said really stuck with me. She said, "Nurturing our grief is how we mother our child." I love that. It's so true. As a mother, when you're faced with life without your child to care for, you have to nurture something, and the closest thing to our child is the grief we are left with. The way she said it made me feel more like a mom than I have felt since April when Owen died. In that setting with eleven other moms without their babies, I felt like a normal mom. Something I long to feel every day. It was so comforting.

I wanted to be a sponge that weekend and absorb everything I could. The whole weekend was so good, but the last morning was my favorite. It was a time of praise and worship where we went through scripture together followed by songs. The focus was on hearing Jesus speak into our sorrow. That's really the goal in all of this, right?

Emptiness is what I feel  the most (other than deep sorrow) after losing Owen. My arms are empty. His crib is empty. Our house is empty. My heart often feels empty. Nancy spoke about that emptiness. We looked at 2 Corinthians 12:9, "My grace is sufficient for you; for my power is made perfect in weakness. She said God is saying "My grace is going to be enough in the form, timing, and quantity that you need it. I'm going to fill up the emptiness." She said that we see emptiness as our biggest problem, but God sees it as his biggest opportunity. God created the heavens and the earth out of emptiness. He filled it with light, life, and goodness. God spoke it into place. He is enough and he will fill our emptiness.

I also struggle with wondering about the "what if's" during Owen's life... I wonder if he would still be here if we made different decisions about his medical care. It's such a horrible and dangerous place to go in my mind. What if Owen stayed on ECMO one more day, or came off two days before when he was stronger? What if I ate something that caused his heart condition? What if I knew about his sickness before he was born? Would that have changed his treatment and given him a better chance? Those are just a few of the many what if's I think of. We looked at Revelation 1:17-18 that says, "Don't be afraid! ... I hold the keys of death and the grave."  Jesus holds the key to life and death. He's on the other side of the door to receive. Even though it feels way too soon to say goodbye, it was right on time. She went on to say, because Jesus holds the keys, we can surrender the "if only's." While I don't like that it was the right time for Owen to die, it's so incredibly freeing to be reminded that nothing I could have done would have changed the outcome.

Exhaustion is another struggle I've faced. Grieving takes so much energy. More energy than I even have most days. "Come to me, all of you who are weary and carry heavy burdens and I will give you rest" - Matthew 11:28. Jesus' invitation and command is to come to Him and He will give us rest. Often times when I come to God, I come with my own agenda. I have plans and dreams and long for them to be met more than I long to draw closer to Him. Nancy said that to rest in Him means surrendering all of our plans. This is the hardest thing for me. When Owen was alive, I remember coming to God, and asking for healing. There was one point though when I asked for healing, but also for His will to be done. It was the scariest thing for me. I knew that in doing that, I was surrendering to my plan for Owen to become healthy and live a full life. Instead, I was accepting the fact that God's will could be to take him home. During these past ten months without him, I still have plans and hopes. I struggle with where my hope lies. Does it lie in having more children and job security and health, or does it lie in the Lord? Letting God be enough even if my prayers aren't answered and coming to Him without an agenda is where true rest is found.

Everything I've felt. Emptiness, anger, regret, sorrow, weariness. It was all covered during this one Sunday morning at the Respite Retreat. As we said our goodbyes before heading home, I went up to Nancy and tearfully told her that I knew people say that healing can happen, but that I honestly didn't believe them. But during that weekend, I wasn't sure how, but my heart experienced some healing for the first time. I am so thankful to Nancy and David for continuing this ministry. As anxious as I was to come, I didn't want to leave. I'm thankful for new friendships and a deeper relationship with God because of it.