Brace for Impact

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The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. Insert P-A-N-I-C.

These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.

But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…

We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.

This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.

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2 comments

  1. Many of us will never fully understand the complexities that involve each thought process and decision that inundate you on a daily basis, the emotional chaos, the feeling of walking right into the eye of the storm and now knowing how you’re going to find your way out. How could we even pretend to understand?

    I know how hard it was for you to write this post. And, as your friend, as someone who’s been there since before Owen’s birth, I want you to know that your words have meaning. They have power. They are appreciated in the sense that they help us understand that little bit more. While we may not always think to say or do the ‘right’ thing (because unchartered waters and all), know that as you brace for impact, you have many arms to catch you if you fall.

    xoxoxo

  2. We are sailing in the same waters. My son had his first surgery at 6 weeks, his second surgery at 6 months, and he was to have the third at 2 or 3 years. He is now 6, and hasn’t yet had the third surgery, but at his last cardiology appointment the Dr. said the time is coming, probably within the next year. I can’t even begin to think of how to brace for impact. every time I even think about it I break down. How do I explain it to him? How do I be strong while I’m explaining it to him as to not scare him? How do I not be scared? I remember the 2nd surgery like it was yesterday. The first one was such a whirlwind and he was sick and it was just another part of the whole diagnosis, hospitalization, shock, etc. At the time I just had no expectations – I was numb. But the 2nd one was so different. He had been home and growing and happy and thriving. He devoloped the sweetest personality. It was the hardest thing I eber had to do to hand over that smiling, seemingly healthy, beautiful baby over to the hospital staff to take him into the OR. How do we do this again? Now that he’s this age? Now that he’s this this person? My friends and family tell me I’m so strong, and we’ll get through this…. but I’m not strong. I’m weak, and flailing, and emotional, and terrified. I pray for you and your son and your family that only your best, most positive thoughts and daydreams become your reality. 💕

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