Our Family

A letter I wrote a few weeks ago for my friend… but finally had the courage to share it. I hope its message can not only help her family, but many others! You will find normal again, you are not alone!

you-will-find-normal-again-you-are-not-alone-dealing-with-grief-and-children-in-the-hospital-hypoplastic-left-heart-syndrome-children-in-the-hospital

You will find normal again, you are not alone!

We all know the saying you never know someone till you have walked in their shoes?  I don’t think any of us can 100% understand what someone is going through because we are all so different. But you can at least have a better understanding of what it is like when you have had similar experiences.

This morning I woke up and saw a Go Fund Me account set up for a family friend. My Mom and several  people from our town had shared it. My heart sank, I saw a photo of her sweet lil baby girl.  I then found out that she had fallen into the camp fire and been life flighted to a burn center.  This was awful, but at least the burns were on her arms and chest, not her whole body.  But I also understand how traumatic and critical burns can be. Clearly she is a very sick little girl, and has a long road ahead of her. Likely years of healing and therapy will be needed.

I got the kids ready for school, yet in the back of my mind still feeling a bit sick knowing someone you care about is hurting.  We said our family prayers to get the kids off to school,  I asked my Father in Heaven to please be with this little girl. But also to be with her parents, and grandparents.  Asking that they will have the strength to care of her.  Being in the hospital with a critically ill child, is honestly one of the hardest things you will ever do. I know because  I have been there.

“In an empty hospital room, numb, confused and heart broken”

My oldest son was born missing half his heart. When the doctor delivered that news to us about 12 hours after my son was born, my whole life changed.  Life changing decisions were made within a matter of minutes my son and husband left on a life flight to Seattle in an attempt to try and save his life.  I was left there in an empty hospital room, numb, confused and heart broken. How did this even happen, and how was life ever going to be normal again?

The tears seemed endless, and as kind as the nurses and staff had been, I felt so alone. My Mom was there with me, yet I still felt so empty.  I really wanted to just go to sleep and wake up and find out all of this was a bad dream.  This is not how my life was suppose to go? I was suppose to be bringing my baby home and starting my new life as a mother. Instead I was laying in an empty hospital room, looking at the empty car seat that I had brought with me the day before. The car seat that was suppose to bring my baby home.

“Constant Praying”

I prayed a lot, almost constant. Praying and crying was about the only thing I felt like I could do.  At that point they only gave my son about a 30% chance of living through his first surgery. I had just gotten word from my husband that they did not even think he was a candidate for surgery, he would most likely die on the operating table.  My baby was going to die? Those are words no mothers should ever have to hear. I was not even there to hold him, I could not fly out till the next day. I never really understood heartache till that day. Like I said before, my life changed forever on that day.

“To say I felt hopeless was an understatement”

I was worried about my son, but I was also worried about myself. How was I going to do this? How was I going to pay for his surgeries? Where was I going to stay?  How was I going to pay for food and travel?  Would I be able to learn to care for him if he did live?  How was I going to give him all his medications? Would I be able to learn all the medical terms?  Am I going to loosing my baby?  HOW WAS I EVER GOING TO DO THIS? To say I felt hopeless was an understatement.

As I lay looking at the window, tears running down my face,  I was turned away from my Mom so she could not see me crying. I heard the phone ring, my Mom answered it for me.  Still looking out the window I did not turn over, instead I just listened. I heard my Mom say, “She is doing ok, she is just really scared and wants to get to her baby.”  My Mom then tipped the phone down and said, “Sarah, it is Aunt Susan she wanted to let you know she loves you and that she knows how scared you must be right now, and she is praying for you.”

“She was the first of many people that gave me the courage to keep going”

Once again the tears started flowing down my face, but this time it was a little different. You see my Aunt Susan had lost her baby minutes after giving birth about 20 years before. I had always heard the story, and thought how sad that must have been. Yet I never understood it, I had never felt those feeling because I had not lived through that same experience.  That phone call brought me so much strength, it was if she had reached through the phone and given me a hug. I was still terrified and scared. Yet I felt such love from her, she had been there before, she knew what I was feeling. She helped me feel safe, and that I could get through this.  I had not lost my baby yet, but if I did I knew that she was one of the few people that understood my heartache. She was the first of many people that gave me the courage to keep going.

“Outpouring of Love”

Over the next few years I saw an outpouring of love from friends, family and even total strangers. Money to help pay for flights, rides to the airport, meals, cards filled with encouragement, strangers who let us borrow their car while we were out of state at distant hospitals.  People coming to sit with me so I was not alone, since we were in the hospital for weeks at a time. It was a long and often lonely journey.  Everyone else was moving right along with their lives. Yet mine seemed to be moving in slow motion and it seemed my “normal life” was only a memory.

One of the things that gave me the most hope was seeing other heart families that had made it, or other parents that had sick kids that were now well.  I knew they understood what I was feeling, the heartache that seemed to consume me, they had felt it too.  But here they were a few years later with smiles on their faces, going to school, having family dinner around the table (instead of in a hospital room). They were planning vacations, they were going to church, going to the movies, or just going to work everyday…  they were just living normal lives.  And that gave me more hope than anything.

“Not just for your little one, but for YOU”

So as I sit here, I want to tell my friend who’s lil girl is in the burn unit right now… my heart aches for you.  My prayers have been constant for you today and will continue to be offered in your behalf. Not just for your little one, but for YOU.  I pray that you can feel them, I pray that you have the strength it takes to watch your little one hurt, and know that there is nothing you can do to make it stop.  You never understand how much you love someone until they are hurting and you can’t fix it.

Your journey is not going to be easy, there are going to be days you are going to want to give up. You will feel anger, sadness, confusion,  joy, hope and even total emptiness during this journey. But you will find joy again, and it will be more meaningful than ever!    I can also tell you, you will find normal again someday.

Our stories are different, but I hope you can find comfort in me telling you. You are not alone, you can do it, you are loved… and with time you will be able to smile again!


Watch my recorded video on answering your questions and telling my sons story

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Filed Under: Heart Stories, I'm a Heart Mom

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Today my oldest son turns 15. This is a milestone for most kids. But for my Matthew, this is so much more. Some of you know his story, but for those of you who do not let me give you a brief history.  Matthew was born missing half is heart, a condition called Hypoplastic Left Heart Syndrome.  A word that when I first heard I could not even say. The doctor wrote it down on a piece of paper for me, with a rough sketch of what a normal heart looked like and what his looked like instead. I held that paper and just cried, the tears would not stop. He looked so perfect, how could he be so broken?

I did not know anything was wrong with him, till a few hours after he was born. One of the first miracles in Matthew’s journey is the fact that his pediatrician noticed the small signs that something was not right with him and pursued further testing. The pediatric cardiologist happened to be in the hospital that day too. She normally only came to our small town hospital once a month, but she was there that day. The two of them together discovered that Matthew had one of the worst heart defects, he was literally missing half his heart. Sadly the only other person I had ever know with this condition was our pediatricians daughter, she has passed  at 3 weeks old about a year before.

We were given three options. We could choose compassionate care, which meant we would hold him and love him until he passed away. This option would leave him free from any needles, tubes or surgery.  Second option was heart transplant. He would be intubated and in the hospital,  but most likely he would pass away before a heart would come available for him. Third option was surgery. A series of at least three open heart surgery’s where they would try to reroute the heart, they gave him about a 30% chance of making it through the first surgery.hypoplastic left heart syndrome, HLHS, echo Matthew

As I sat on my hospital bed holding this piece of paper, trying to make sense of it all I felt hopeless. I was suppose to be picking out what outfit to put him in to take him home. Instead I was trying to decide if he was going to die today, or possibly on an operating table.  As I looked at my baby, I could not imagine putting him through all that pain. Plus I was paralyzed by fear and not knowing what was ahead. In my heart I thought maybe compassionate care was the best option. Just letting him pass without pain, and without struggle.

I looked at my husband… He had  sat and listened to everything the doctors had told us together. When I heard it, it was all a blur. But my husband had heard every word, every detail. He had mapped out in his head how each surgery would go and what changes would be made to his heart. He understood the risk, he understood it was going to be a long journey… But he said we had to give him a shot.  Our son had not given up yet, so how could we?  He stood up from the side of the bed and said, ” I will sell everything I own, I will go wherever it takes… I will give my son a chance to live. If he dies on that operating table that is ok. I can live knowing that I gave my son every chance he had.”

He made the choice I was to scared to make, the choice to give our son a chance at life.

As I sit here  today and think about our journey over the past 15 years, it has been a long hard road. There were days, nights and even weeks and that I wondered if life was ever going to feel normal?  Would there ever be a day that I didn’t feel the need to count his heart rate, or watch to see how heavy he was breathing. Or would I ever be able to take the emergency bag out of my car, that was packed and ready for the next life flight trip?  The first 4 years were the hardest, we lived in and out of hospitals in three different states. Matthew was very sick and ended up having over 14 surgeries.  Some days I wondered if I really had what it took to be his Momma. But he has been worth every struggle, every tear, every heartache.  He never gave up, so how could I?

Not a night goes by that I don’t check on him before I go to bed.  I still place my hand on his chest to just feel his heart, and I  kiss his forehead. I say a prayer in my heart, thanking my Father in Heaven for him and pleading with the Lord for another day. His journey has taught me that each day really is a gift.

Happy Birthday lil buddy… praying for another healthy year with you!

 

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