Our Heart Hero

Three years ago, today, I was terrified as I sat waiting to hand my son over to the cardiac surgeon for heart surgery. I had already done so twice before, but this time instead of my baby boy, I was going to be handing over my seven and a half year old son, Koah. Most of you know how Isaac led us to Max and Ryder, and how because of Isaac we are in the process of adopting Henry and Elliette. But, what some of you may not know is that Isaac also saved his big brother's life.

When Isaac was born with a severe heart defect, we asked about having our other children's hearts checked, but the doctors did not feel that our other children were at risk. They both appeared very healthy, and their hearts sounded great. It is typically not standard procedure to test the other children unless there is a reason to do so. Several months later, as I was sitting by Isaac's bed in the Cardiac ICU one night, I just couldn't get rid of the feeling that I needed to have their hearts checked. I arranged the appointment with Isaac's cardiologist, but none of us really thought there was anything to worry about. I took Abi and Koah to their appointments in the hospital while Jason stayed with Isaac in his room. I will never forget hearing the news that day that Koah also had 2 left sided heart defects, and that he would need heart surgery soon. For 7 1/2 years, his heart defects went completely undiagnosed!

I can still remember sitting with Koah as we waited for them to take him into the OR. He was so scared, and yet he was trying to be so brave. And I was terrified, but yet I needed to be strong for him.

It was once again one of the hardest things I have ever had to do. I remember walking as far as I could towards the operating room with him. He tried to hold onto my arm as they took him away. I can still remember him calling for me all the way towards the operating room. My son desperately wanted me, and yet there was nothing I could do to help him. It was one of the worst feelings in the world. Yes, they gave him iv medication before all of this, but for some reason it didn't work on him. Thankfully, he only remembers going into the OR, and not much after that, but that memory is forever burned into my heart. I was so relieved once the surgery was over and we could finally see him in the Cardiac ICU.

Going into the surgery, we knew that he had a Coarctation of the Aorta and a Bicuspid Aortic Valve. What we didn't know was how severe his coarctation was. After the surgery, they showed us a picture of the section of his aorta that they cut out. At the point of coarctation, the aorta was literally the size of a needle. The cardiac surgeon does not think that there was any blood flow whatsoever through his aorta. He had essentially a functionally Interrupted Aortic Arch. If Isaac had not been born, we could have lost Koah at any time. He could have had a stroke. He could have developed severe cardiomyopathy. He could have just dropped dead. He could have been born extremely sick and would have required heart surgery quickly. We don't know why Koah wasn't born extremely sick, and why he didn't have any symptoms, unless his coarctation became more severe over time. What we do know is that Koah is a miracle, and God used Isaac to save his life.

Thankfully, Koah's recovery went very smoothly, and he only spent 5 days recovering in the Cardiac ICU.

During those 5 days in the CICU, he visited his brother just a few rooms down.

The two heart brothers shared a very special bond, and Koah will always be thankful to his baby brother for saving his life.

At the time of Koah's heart surgery, what we didn't know was that Isaac's earthly life would end just one year later. On may 2, 2011, the night before Koah's heart surgery, I wrote Koah a letter, praying with all of my heart that it wouldn't be our last night together. I did not know that exactly one year later, I would be holding Isaac in my arms as his heart beat for the very last time on this earth. Isaac came and accomplished what he was meant to do, and then I believe God gave him an extra year with us. Here is part of the letter that I wrote that night three years ago:

Koah,

You are my sweet baby boy. No matter how old you are, you will always be my baby boy....You gave me the greatest privilege in the world - you made me a Mommy. I want you to know how incredibly proud I am of you. You are becoming such a wonderful young man. You have a very kind and generous heart. I am so blessed to be your Mommy....I am so sorry that you have to go through this, but I know this will only make you a stronger person. You will be even more understanding of others' difficulties. I am so amazed at your response to all of this. Not once have I heard you say “why me?” or “it’s not fair”. You have taken the news of your heart condition and surgery with more maturity than most people would. You are strong beyond your years. If I could take your place, Koah, I would do it in a heartbeat. I would do it 1,000+ times over if I could save you from going through this just once. I don’t completely understand why you have to go through this, but I know that God doesn’t make mistakes and He is allowing these trials for a reason. Just like the words to a song we were listening to today “You never know what faith is ‘till you don’t understand”. It’s easy to have faith when things are going perfectly, but it’s in times like these that your faith is tested and that’s when you know if it is real. In life, the things we experience are sometimes not about us. Our lives are to bring glory to God and to draw others to Him. I don’t like that you and your brother have to go through this, but I know God has a plan and He is bringing others to Him. God used Isaac to help save your physical life, and God is using your and Isaac's lives to help save people's spiritual lives. I don’t want you to worry tomorrow. Even though I can’t be in the room with you, I will be praying for you and I know God will be right there with you....I love you SO MUCH!!!!!
Love,
Mommy

The night I wrote that letter and the night just one year later were extremely difficult nights. They were nights that tested our faith. We didn't understand then why our boys had to endure so much, and we certainly don't understand now why we couldn't keep Isaac here with us. But, real faith is being able to trust Him even when we don't understand. I don't always need to understand, because I know the One who does. 

Koah is now doing very well. He is 10 years old and is regularly followed by his pediatric cardiologist. He will need to be followed for life to make sure that his aorta does not narrow, and they will continue to watch his bicuspid aortic valve. He is an incredible big brother whose life was forever changed by his baby brother, his heart hero. We miss Isaac deeply, with all of our hearts, but his legacy continues to live on in the life of Koah, and in Max and Ryder, and all of those he touched along the way.

Trading Hearts

It is hard to believe that today marks two years since you left my arms for heaven, Isaac. Two years, and yet sometimes it feels just like yesterday that my heart was being ripped from my chest when your heart stopped beating on this earth. Two years, and the pain isn't any less. There are days when it takes every ounce of strength I have just to breathe. There are days when the pain of your absence, the kind of pain that takes my breath away, is so overwhelming that I am forced to live life one second at a time. Losing you was not a one time event. I didn't just lose you on the day that I held you in my arms as your heart beat for the very last time, but I have lost you every day since. Everyday I am faced with the reality that you are no longer here in my arms, and you never will be again this side of heaven. And, I HATE that reality. Every moment, every new experience, every new day is absent of you. I HATE that I have had to learn to live my life without you in my arms. I hate it with every part of my heart.

 

But, so much more than the pain of your absence, I LOVE that I had the incredible privilege of being your mommy. I LOVE that I had almost 19 amazing months with you when I was told I wouldn't have any. I LOVE that I was able to hold you, look into your eyes, sing to you, read to you, kiss your fuzzy cheeks, play with your hair, breathe you in, and love you with everything I had every second of every day. And that loving you makes the missing you SO MUCH HARDER! But, baby boy, you taught me to do hard things, and I will willingly accept this pain every day knowing that it is because I had the incredible privilege of having you as my son, even if only for a short time on this earth. 

I know your days were written before you were born, but the missing you is so incredibly painful. I am trying to be thankful for the time I had with you instead of being angry for the time I don't have with you, but sometimes it is just so hard. As much as I miss you bubby, I know that this life is not about me. You have forever changed me. You have radically changed my heart and my walk with God. I always knew there had to be more, and after having you, Isaac, I know there is. This world is not our home. We are just passing through. And you, Isaac, in the short time you were here touched more lives than most people do in a lifetime. I am so grateful that God let me be a part of that by choosing me to be your Mommy. The life that was touched the most was mine, baby boy. I will never be the same. You taught me to do hard things, baby. You taught me not to insulate myself from pain and suffering, but to open up my heart and love with everything I have even when the pain is unbearable. 

I hope with all of my heart you know just how much I love you. I miss you with all of my heart. Our temporary separation does not change that fact that I will always be your mommy and you were, and ALWAYS will be, my amazing son. As much as I wish I did not have to feel the pain of your absence, I will embrace the pain knowing it is because of the amazing love we shared. 

Baby boy, I would have given you my heart to save you, and while that wasn't physically possible, I guess in a way, we did trade hearts. The second you left my arms for heaven, your broken heart was instantly healed. Your heart is no longer broken, but is now perfect, and healthy and whole, and it is now I who will forever carry a broken heart on this earth. 

I miss you my sweet boy, and I love you forever. We are another year closer to being together forever.