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Difficult Post

From Kate:

When Mark and I decided to start a blog in honor of Getty, we knew that there were going to be times in which it was going to feel too difficult to write. We knew that we would probably do a terrible job of accurately explaining how we are feeling or thinking. But we knew that this blog was our way of keeping our family and friends updated on our journey. We have figured out pretty quickly that Team Getty has become not just a few individuals, but hundreds of people who are following our journey. This is one of those posts, so please bear with me if I do not gracefully articulate my thoughts.

Getty’s surgery is scheduled for 2:30pm tomorrow. We have spent the last three days prepping our beautiful girl for a really big surgery.  And even prepping her and making sure she is acclimated, still doesn’t mean that everything will be fine. The disease just takes. This disease doesn’t care if you do cough assist, doesn’t care if you love your child and would do anything for them, doesn’t care if you have gone to great lengths to make sure she has the best doctors looking after her; this disease doesn’t care. I hate SMA.

Our little owl has been nothing but understanding throughout this entire process. She has been her smiley, spunky self without fail. She is a trooper and we are so incredibly proud of her. She looks at us with so much trust. Every new nurse or doctor that comes to meet her she welcomes them with a sweet smile.

Rightly so, we are nervous, at some point tomorrow we will have to let her go and allow others to take as good of care of her as we would. That is so very scary to me, but I am comforted that this surgery is for the best. This procedure will give Getty some safety from an unrelenting disease. Our prayer is that it will give her and us more wonderful time together.

I wish SMA was cured. No parent should ever have to go through this. No parent should have to make these kinds of decisions. No child should have to have their health compromised. It is just plain cruel. That is the only word I can think of to define it.

I look forward to being reunited with my little owl. I look forward to more snuggles and singing at night while we cuddle in bed together. I look forward to being home together, without any talk about procedures, statistics, or scenarios. I look forward to being a family underneath our own roof. Soon enough…………

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  • sara says:

    I’m a friend and coworker of Kim’s. She told me all about little Getty. I’m praying for her and her surgery tomorrow. She’s a beautiful little girl. A little sparkler 🙂

  • Lorena Stewart says:

    I will keep you all in my prayers tomorrow. Praying for a successful surgery and your quick return home for more snuggle time with your beautiful little owl.

  • Morgan says:

    Praying for our little Owl. Hang in there Momma and Daddy Owl. We’re praying for you too.

  • Eileen Grega says:

    You will be home soon, she’s so lucky to have you as her mommy!

  • JoEl Randall says:

    Mark, Kate and Getty….as always, you are all in our thoughts and prayers! God will be helping you through todays journey, as he has done so far. Nothing seems fair about this, but there must be a reason. Love to you all!

  • Margaret Buckley says:

    Dear Kate,
    I’ll be rooting for you all too. This is so much heartbreak, but your joy at Getty’s very existence shines through all your posts. She’s an amazing baby. Her parents ain’t bad either. Take good care of yourself and of each other.
    Margaret (MoodIndigo1 at the SDMB)

  • Becky says:

    Sending you so much love…..

  • Leslie Stumpf says:

    We are thinking of you and Getty today as she goes through her surgery. Much love,

    Leslie, John, Rachel and Sarah

  • AUNTIE JAMA says:

    Thank you for that wonderful pic this morning….and with an incredible smile like that and sparkling blue eyes Little Owl – you are going to do great! We love all of you so much and with all the prayers & support coming your way from all directions hopefully you will all be HOME very soon and cuddling away TOGETHER (with Cooper, too)! Mark & Kate take a minute and embrace each other because you are the most amazing parents Little Getty could have!! What a beautiful FAMILY!!! Your Getty Team from all over, will be in position for you at 2:30….you will never be alone!!!

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