Dear Kierra 

You’re finally asleep now, you’ve had a rough day. You have a fever and just don’t feel like yourself. So we sang to you and rocked you and finally when I said “How about we lay you down, you dream about Beauty and the Beast?” You agreed and fell right asleep. You loved that movie when we watched it the other day, I couldn’t believe you sat still, completely enthralled the entire time. In fact, you now say “Beast, beast” when I sing you the theme song. 

I cannot help but make an obtuse comparison between you and the character of the beast. Some might not understand that but you are like two different entities. There is you-your essence, which is strong and spirited, full of life, thriving, beautiful, intelligent,  laughing,  playful, charming and many other positive,  wonderful things. Then there is your body- twisting and conspiring against you, pain causing, frail, ruthless in its pursuit to destroy you piece by piece – the beast. Marfan Syndrome is your beast. From your tiniest blood cell, to your spine, all effected by the beast. 

Your appointment at Shriner’s this week showed us that despite wearing the brace around 18 hours a day for 7 weeks, your lumbar curve INCREASED by 20º. Heart breaking.  And the news about your aortic root increasing in size the week before… I just wanted to hear 1 good thing from either of those appointments.  

It is numbing my love, to have to hear such negative things about you. It’s painful and numbing all at once. I look at you and wonder how anything could be wrong at all, and that is because I see you, inside that beast. It will try to cut you down my dear but don’t you ever let it. You keep fighting it. Whether it be here on earth or in heaven, you will someday shed that beast and be made whole. And the light and life that I see shining in you will burst forth. Your body is against you, but I know you will never let it win, not really. Not when you are who you are. And my precious Kierra, it’s important that I tell you this – I love you. Twisted spine, faulty heart, delicate skin, weak ankles, but light filled blue eyes, angelic laugh, rosy cheeks, Einstein mind, long elegant fingers, avocado hogging, music loving, pass gas and blame it on me, silly, gorgeous girl. I LOVE YOU.  I cherish you. I cannot have you without the beast so I love you completely,  all of you.  And even more importantly,  God loves you my girl. When you read this some day, I hope that I have pointed you towards His holy path. You are not a mistake,  your life is full of meaning and purpose. It sometimes feels like the opposite of what I pray happens, in regards to your beast but…. my faith is in tact. Blind as it may seem to some. Now I just have to pray that I show you Christ’s love. You may face a day when it feels like your prayers go unanswered but I beg you to stick it out. I will never give up hope on a better body for you but I know your life story will be great, regardless of the beast, in fact, perhaps because of it. Beauty and The Prince would have been a nice story but Beauty and the Beast is a masterpiece. God is writing a masterpiece in you my love. You are a champion. You are an overcomer. You are beloved. You are my daughter and I could not be more blessed. 

Love you forever and always,

Your Mommy

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3 thoughts on “Dear Kierra 

  1. My family is perfect to me! I LOVE you all. What a writer you are. Tears rolling down my eyes. Positive words, giving God the glory. I couldn’t be more proud.

    Liked by 1 person

  2. I pray for little Kierra. My Keeva, also has Marfan Syndrome. I too feel this pain everyday. My heart breaks for these little children that have to endure so much and overcome so many obstacles. I share your anxiety at every doctors appointment, praying for good news but preparing for the worst. Love our children to pieces, be the best advocates and educate society on Marfans is our life mission. Know you are not alone. Kelly

    Liked by 1 person

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