11 Days of Dishonesty

It’s dark. It’s late. I’m tired. I can’t fall asleep because I can finally feel. In this moment my net is wide open and vulnerability is scoring. It’s been 11 days since I subconsciously put the wall up. 11 days since a tear was shed. It’s been 11 days since I have felt honest with myself and my emotions.

It’s a necessary evil to make the decision not to feel. It seems to make talking to others about Beckett’s liver disease more comfortable. It makes it easier to play the situation off as a natural part of life. It also shows I am strong and faithful. Or does it? Does it really do all of those things when deep down inside I am scared shitless? When every single time I change my sons diaper and see his giant scar across his ever expanding abdomen. Or when he smiles at me and I look him in the eyes to smile back and all I can think of is, “agh, his eyes still look yellow.” What about when others kindly ask, “how is Beckett doing?” and I have to sheepishly admit that I have no idea. As his father, I have no idea how Beckett is doing. What I can tell you is that he is still yellow and he blows out of 3 outfits everyday because we are forced to use a bigger size of diaper than a kid with his weight would traditionally use because his stomach is huge.

Ask me about one of my other kids, I will tell you exactly how they are doing because they are healthy and they are living their lives the way they should be. Or are they? Is it normal for your four year old (Adalyn) to ask you every morning if Beckett is going to see the doctor that day? Which we have learned is her way of asking if Grandma is coming over so Mom and Dad can go stay at the hospital for days. She also thinks that it’s now perfectly normal for people to show up at dinner time with bowls of food for us to eat. Is it normal for your two year old (Raemee) to walk through every room in the house screaming your name and crying because she didn’t see you walk downstairs to change the wash? No, it’s not. Why? Because the first two years of her life she didn’t care what part of the house you were in because she wanted you out of her business. Nowadays all she seems to care about is my approval of her.

So here I am finally being honest for the first time in 11 days. I’m scared. I’m terrified that I may lose my son someday because he won’t get the liver that he needs. I’m nervous that a transplant will have complications and he rejects the new liver or that his body makes him pay the price for having a transplant. The unknown date of this future event seems to haunt me. I’m not just scared for Beckett. I’m worried about Kim and the burden that she has to carry as the mother of our home. I’m sensitive to her emotions and feeling but don’t know how to help her. I’m worried about Adalyn and Raemee and the lives they will have to live now that their brother has freakin’ Biliary Atresia. The mysterious disease with an unknown cause that can only be cured by receiving someone else’s liver. You want honesty, ok. It hurts. It sucks… And I feel like as the provider of my home I am failing to provide my family with what they need. I can’t just go to the shopping mall and pick up a liver for my son. I can’t stay home from the hospital with the girls and leave Kimmie by herself in that depressing building of pediatric medical miracles. Which means I can’t stay home to provide my girlies with the parental love and comfort that they have grown accustom to their whole lives and deserve.

So now what? I guess I hit the lights and rebuild the wall in my sleep. When I wake up in the morning I guess I will be feeling, OK.

Written by: Shawn

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4 Comments

Filed under Perspective

4 responses to “11 Days of Dishonesty

  1. Lindi Shumaker

    Shawn….. I hear you!!!!! Health problems make all “normalcy” disappear in a nano second. It’s brutal!!!! I don’t want to have to be “strong”. I just want to have everything disappear for me and for you. It does SUCK! My kids pray for Baby Beckett every day. Though I can’t comprehend what you are going through I do understand as much as my experiences have taught me. Sending our love, prayers, and comfort.

    Like

    • son0fstin

      Lindi thank you for sharing. I have thought about, “as much understanding as my experiences have given me” constantly these past few days. What a powerful statement and beautiful thing our experiences are that allow us to connect with others and God on a new level. Your words and your experiences have brought us comfort.

      Like

  2. Jenny

    I want to give you a hug. And your kids. Ok…Kim too.

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  3. Brae Burbidge

    Shawn,
    You dont know me but I have known your sweet wife longer than she can remember. Your amazing words are so heartfelt and telling.

    You are a great father. To sit and stew about what the future holds for your little family is the hallmark of a great father. A father that only wants what is very best for all his children. These are godlike qualities, qualities that might be painful but are still godlike. If I can offer anything please let me offer this. As you love this little boy and his sweet sisters, yourFather in Heaven loves you for doing that very thing. We might not understand but its not about the understanding it is simply about the doing. Faith that your daughters have in you as a “Dad”, faith that a liitle boy has in your stregnth when you hold him or stare at him and pray to God that he will be alright. Faith that a wonderful wife has in you that even though you may not know everything, you know enough to rely on the Lord and your Father.

    You are a great father and husband, we know this because you do hurt and you do hide it. If it was any other way you would less than godlike.

    I will pray for your little family.

    Brae Burbidge

    Like

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