Thursday, October 2, 2014

Who Makes You Brave?

While it is God who ultimately gives us the courage and strength to follow as He leads, it is also our incredible children who have inspired us with their AMAZING bravery. 

It is the children we have met along the way who have fought through this life and faced huge battles with an amazing strength and bravery. Many of those children are no longer here on this earth, and yet, their legacy of incredible bravery and strength lives on.

It is my Dad, who has faced and fought through major sickness with such courage, and faith, and strength, and God has miraculously healed him and brought him through. 

It is the millions of children who are still waiting...waiting for the chance to be be have someone to fight for them and a REASON to keep fighting.

Who is it that makes you Brave????

And with that thought, introducing our very first fundraiser "You Make Me Brave". In order to get Brave home as soon as possible so that he can get the medical care that he so desperately needs, we will be working very hard to raise the funds as quickly as possible so that the process will not be delayed.

Now for the shirt details. All prices include free shipping withing the US. You can pay for and order the shirts on the right side of our blog. The shirt orders will run until Monday, October 20th. Once the order ends, it will take approximately 2 weeks for the shirts to come in so that I can ship them out to you. Thank you for helping us bring BRAVE HOME!!!! The details, pricing, and size chart for the shirts are below.

"You Make Me Brave" Flowy Draped Dolman Sleeve Tee  $29 (with free shipping in the US)

Marble 3/4 Sleeve Raglan $29 (with free shipping in the US)

"You Make Me Brave" Marble V-Necks $26 (with free shipping in the US)

I hope you like these shirts as much as I do, and as you wear them, I pray that you will pray for our sweet boy Brave, and that you will think of who it is that makes you Brave.

You Make Me Brave

You make me brave.
You make me brave.
You call me out beyond the shore into the waves.

You make me brave.
You make me brave.
No fear can hinder now the love that made a way. 
-Bethel Music

It has been said that bravery is not the absence of fear, but rather incredible courage while staring in the face of overwhelming fear.

We have known that overwhelming fear.

We have known the type of fear that takes your breath away and brings you to your knees.

We have stared it in the face again and again.

We have lived and breathed fear.

We have faced our fears and we have fought with everything we had.

It was not too long ago that we lived every day with the constant fear that it could be the last day with our son on this earth. I can still remember my very first experience with the reality of that fear as another heart mommy lost her son to heaven. The emotions I felt on that day are still very raw. I can still feel the overwhelming fear that I felt as I watched the grief unfold in that Cardiac ICU room, and the overwhelming pain that gripped my heart. As I experienced loss after loss of the beautiful heart babies and children of the friends I had grown to love in the 15 months in the Pediatric Cardiac ICU, those fears became deeper, the pain and heartbreak became more overwhelming, and the emotions became even more raw. Watching a family lose their child to heaven is something you can never get used to, no matter how many times you experience that type of loss. It was too real. I knew in my heart that I could never EVER survive that type of loss. It was unimaginable. I couldn’t face that fear. It was a fear that could not be overcome. It was a loss that no one could possibly recover from. It was 18 months later, while in the Pediatric Cardiac ICU in Boston, that the biggest fear in our lives became our reality. It was our turn to know the unimaginable fear of knowing that our time on earth with our son was coming to an end. It was our turn to know what it felt like to hold our son in our arms as his heart beat for the very last time on this earth. And it was our turn to know the unimaginable pain that would fill our hearts the moment he left this earth. 

Our biggest fear became our unimaginable reality. 

We had faced fear many times in his life and his big brother's life, but this time, it was the fear that I thought could not be overcome. But, in our weakest and most difficult moments, God gives us the strength we need to face our unimaginable fear. It has been a hard and extremely difficult journey. My heart still longs for my son. I miss him with everything that is within me and I always will this side of heaven. But, he was OH SO WORTH IT! He was such an INCREDIBLE blessing who completely changed our lives. He was worth facing every fear. He was worth feeling the unimaginable pain in his absence. He was worth it all!

And, so when I see children who are still waiting for families because of their severe heart defect, my heart breaks all over again. I find myself begging others to see these children…begging them to take the risk and love these children…..begging them to see what an incredible blessing these children will be to their families…..begging them to know that even in the face of potential loss, these beautiful children are OH SO WORTH IT!

Not too long ago, there was a little 9 year old boy who stole my heart, and I found myself begging others to see him and take the risk. He was labeled “too risky”. As a heart mom of two biological sons with heart defects, and one “chosen” son from Ukraine with a complex heart defect, I know that heart defects can often be overwhelming to families who have never lived this life. His medical need was urgent, but I begged for families to look past his needs and see his worth.

And then as I read about his specific complex heart defect, one that I was familiar with, I had great hope for him. I wondered what made him “too risky”. While his heart defect was complex, it was repairable. Some children with his heart defect go onto needing a heart transplant, but most thrive and live long and healthy lives despite their complex hearts. I thought surely there was a mistake. This beautiful little 9 year old boy couldn’t be too risky. And then as I read more about him, my heart sank. Because he was an orphan, his heart was never repaired – NEVER repaired!!!! And as I learned that, I knew exactly why he was labeled “too risky”. If you have spent any time as a heart parent, you unfortunately know too well what happens when certain heart defects go untreated for too long. After reading his recent reports, and his recent echo, and US cardiologist report, I learned that my worst fear for him was confirmed. As I watched his adorable video, and saw how desperately he wanted a mom and dad, my heart broke for him even more. It was like a punch in the gut. Would there even be a family out there who would be willing to take the risk on an almost 10 year old boy who now carried an inoperable/terminal diagnosis in China? I knew what an incredible blessing he would be to a family if they would be willing to push their fear aside and take the risk. I knew that he was worth the risk, but I also knew the risk was great – perhaps too great. As I pleaded for others to be willing to take the risk, I wondered if I would be willing to do the same if God asked us to take the risk. If I had lived this heart life, faced great fear and great risk, faced great loss, and yet I wouldn't be willing to do it again for him, how could I ask others to take that same risk? It was in that moment, I knew that He WAS asking us to push our fear aside and take the risk. I knew that this little boy who had captured my heart, and yet broke it at the same time, was meant to be MY SON!!!!!!!

Are we prepared for the possibility of losing another son?

Honestly, that is nothing you can ever be prepared for. We have already faced the worst once before, and with God, we have come out the other side and have survived. But, we are praying and hoping that there will be something that can be done for him here… .all the while knowing it is a very real possibility. Every year I am amazed at the advancements in the heart world, and my prayer is that there will be something, someday, that can help him. We know that he absolutely needs to get here as soon as possible to have any hope of surviving. We know the odds are stacked against him, but we also know the One who can do the impossible. We are prepared to love him with everything we have for as long as God allows us to hold him in our arms.
Are we scared? ABSOLUTELY!!!!!

Terrified, actually!!!

We are not without great fear, but we know that God is calling us to push our fear aside. He is calling us to be BRAVE in the face of overwhelming fear. 


And so, we would now like to introduce you to our incredible son, BRAVE!!!!

We love you sweet boy, and we can't wait to hold you in our arms! You are WORTH IT, my son!!! You are SO WORTH IT!!!!!

We know that some people may not understand us following our hearts and bringing him home, and that's okay. We are not immune to being hurt by the negative opinions or feelings of others, but we have learned to not let others opinions change what we have been called to do. Will it be difficult? Likely. But, God didn't call us to easy. It isn't about us or our momentary discomfort. This life is just temporary. We will follow our hearts, for we know God is leading us, and we hope that you will join us on this journey!

We love you, Brave!  You are WORTH IT ALL!!! We are coming, SON!

You make me BRAVE! 
You make me BRAVE!
No fear can hinder now the LOVE that made a way!

Saturday, May 3, 2014

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:

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!!!!!
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.

Friday, May 2, 2014

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.