Righting our Upside Down
I don’t even know where to begin. How to explain how our entire lives have once again been tipped over in a terrifying instant. There is so much, so very much that has happened this past week and a half that I can’t fathom where to begin. Much of it I don’t even want to remember, much less write out.
I just can’t believe this is happening. I can’t believe that my nightmare came true. Again.
It’s all still very surreal. He was born, and for a few hours I had total peace. A healthy baby, a wonderful delivery, everything was ok. And then it spiraled. NICU. Delays to go home. The nurse hearing something odd on his check out exam. A echo of his heart. Meeting with the cardiologist. The news, “Kaden’s heart is very, very sick.” Calls to Dallas. A quick trip home to tell my parents and Bella goodbye and pack. Flight with the team from Dallas who came to get him. Watching a huge team at Children’s work on him, not knowing until this Wednesday how close to death he was when we arrived.
Then this past week. Tests. Blood work. Operations to get pumps/tubes in and out.. Heart transplant approval. Insurance fighting. Finding out all kinds of different diagnosis’s as time goes on. Watching Kaden be hooked to dozens of tubes and pumps and kept alive only by them. Otherwise perfect. Everything normal. Just his lower ventricles on his heart are too weak to pump. No operation can fix this. A virus that caused it that no one has any idea how to cure.
I feel – lost. I feel betrayed. I feel very angry at a God that would let my son go through all of this. I do not understand why, why, why this had to happen to us. After ALL WE’VE DEALT WITH – now we once again have our lives torn apart as we try to keep our heads above water. And our little boy – and Bella. It hurts just to write about them. My mama heart breaks each day.
We have been so blessed here – staying with friends, a medical staff that is amazing. You all have sent money and gift cards, presents and food to our home – please know my parents are grateful for the things there as they care for Bella. We are truly grateful for the things you have sent, using them to buy clothing and essentials as well as pay for gas and our rental car. So thank you – truly.
Each day we wake up, clean up, and head out to the hospital 30-45 min away. We spend most of the day there, talking with the doctors about the test results that are starting to pour in, transplant options, signing papers, and waiting for procedures to be done to stabilize and help him as we wait to see how this all turns out. I still pray for a miracle, every day. Every single day. What else can I do? The miracle may be a transplant but I pray that it will be a full recovery of his heart. That’s the goal of everyone – if it will happens remains to be seen.
I don’t know if I will ever see El Paso again, at least for a very long time. One of us must always be here – for either recovery or transplant. We are working on moving here now. Sam is trying to get relocated as we see progression to this being long term. But we both can’t leave, and he’ll eventually have to for work and paperwork back home. We’re trying to get Bella out here next week. My (amazing) mom has been at our home for two weeks tomorrow for what was supposed to be a visit to welcome a new grandson. We have pets as well so someone has to care for them until we find something more permanent out here.
It’s more than I can think about or deal with. The logistics of this are absolutely beyond me right now. I truly do hand all of this to God because I know I can’t work it out. In any way. He has to do this – we don’t have the time or the energy to work all the angles. Our focus is on Kaden and Bella – we would do anything for them. If it means moving here in a few weeks – fine. If it means one of us going back, ok. We will do what it takes to make this happen.
It’s not fair. It’s not ok. This is absolutely the worst thing – equal with losing the twins – that we have ever been through. I am angry at God for allowing this to happen to us, and I know He can handle it, so for a while? He’ll just have to. I say it in my prayers because there’s no point in trying to pretend that I’m great with watching my son struggle for life as my daughter is hundreds of miles away and my other two are in heaven.
In my anger, there is still hope and trust. It’s all we have. I watch Kaden fight and slowly make progress – even little bits is wonderful – and I pray harder. I try to push aside my “This isn’t what I wanted” emotions and focus on reality. This is what we’ve been dealt. Now how do we handle it? Sam and I take it one day at a time. We make plans and pray God shuts or opens doors as we move forward, blind to what is going to happen.
We have said this over and over again, “We’d do anything for our children.” And we mean it. So no matter how tipped over our lives are, it’s our job to pull the pieces back together for our little family and try to move forward with a new life now. Tough as that is, and as hard as it is to wrap my head around so suddenly. We want Kaden and Bella to know one day that we moved mountains to be with them, no matter what stood in our way.