the big day.

I am not quite sure why I have worked myself up to such a state over tomorrow’s events for Kendall.

For the uninformed, tomorrow, Tuesday the 18th, is Kendall’s port placement surgery. For the un-uninformed, the port (“medi-port”) is the “permanent” (as in, we don’t have to take it out when we leave the hospital) IV that will be implanted under the skin on her chest, and threaded through her vein to her heart. For those who just want the cliffsnotes version – tomorrow is gonna pretty much suck. For all involved.

I do’nt mean to turn this post into a total bummer, because at the end of the day, I realize that really, this is to HELP kendall, and we are LUCKY to be in a country and have insurance that will allow us access to this kind of help for kendall, and in the grand scheme of things, she is doing pretty good. so i really DO get that. But right now, I’m in kind of whiney/panic mode about it. Maybe those aren’t the best words to describe my mood. But it’s certainly been a mood. I hate how much this surgery has been a cloud over my head, infecting and shadowing nearly every waking moment of the past few days. Even when I am otherwise distracted, it is always there, always looming.

To be clear, the surgery itself is not “that bad”. I mean, assuming they can “find a good working vein” (surgeon’s words) without having to ultrasound them all, or to switch sides (we are planning on a right sided access right now, not sure why, we just are), then it should be a pretty quick procedure, roughly an hour. And i mean, in essence, they are just taking a little bit longer than usual to place an Iv, right? No big deal. Except it IS a big deal. In my mind at least.

It is another piece of equipment attached to my baby.

It is another scar on her little body.

It is another reminder of the fact that her body needs help to function at a life-preserving level.

Not to mention the risks for infections, big bad scary infections. and lots of other scary stuff that i’m not even going to get into right now because there’s just no good reason to hash out all the “could-be’s” and “what-if’s” right now. It will do nothing to change the situation. and only serve to further agitate my already agitated state of mind.

So let’s focus on the good.

The good here is that blog2 Kendall will be able to receive the help she so often needs from a hospital type setting right here at home. Being able to stay more consistently hydrated may help her whole gut function on a much better level, and there is even a good chance that we can recover some of the gut function she has been so lacking over the past few weeks/months. And then maybe, just maybe, we won’t need that yucky motility testing or the other stuff we talked about at her last GI appt.

The good here is that we have a team of docs who understand that we need to be supporting Kendall in a better way, and this is a good plan to do so.

The good here is that my baby is an amazing little fighter, and while tomorrow’s events will be painful, and harsh, and back to back brutalities that I don’t think I would wish on my worst enemy, she will come out of them with a smile on her face, and her fist held up for “duck-o” (knuckles, aka, fist bumps). And she will once again teach me the meaning of strength. And faith. And what it means to live each day to the fullest. And what it means to be brought to my knees in prayer.

And that the little moments like the one where i get to see her again after she is awake from her procedures, and she sees my face and she sees her daddy and she tries to sit up/smile/say our names – that THOSE are the moments that you wanna hold on to forever.

So my dear baby girl – I hope your little body rests well tonite. Your heart is beating slowly, hopefully conserving a lot of energy for you for tomorrow, when I am sure you will need it. Your tummy is being rested so that you don’t have to fight the pain, and so that you hopefully don’t spew stomach contents over the surgeons/IR docs tomorrow.  Probably more for the latter than the former. I bought you new tinkerbell slippers tonite for you to wear at the hospital tomorrow. I hope you like them. Oh how i wish I could do this all in your place baby girl. I cannot even imagine how worn out and sore and just done with it all you will be by this blog1 time tomorrow nite. And that will break my heart, knowing that I cannot take it away, or wish it away. this is your journey to walk, and I can only walk it beside you, not for you. but do you know how much you are touching other people’s lives with your amazingness? I am astounded at the cards and notes and emails we have received over the past few weeks. You, in all your crazy gangly glory, with that crooked little grin of yours – you are a bright and shining example of strength and hope and love and faith. That is a huge feat for such little shoulders. i am so proud of you. i am so proud to be your mommy.

So even though I cannot take it all away tomorrow, I will be there to hold you and comfort you as soon as you wake up. I hope you have sweet dreams while you are taking your long nap. I hope that Jesus holds you and sings your song over you. He knows you like bob marley. Please please please don’t try any fancy stuff – just be good, go to sleep and wake up like you’re supposed to. and as soon as you’re ready, you can have some fruit snacks. i’ll have them waiting for you. you will have a lot of people praying for you, so I know you will be in good hands.

I love you so much, baby.

Keep on fightin’.


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  1. Kendall will be in the Lord’s hands. I pray for you all on this next step of your journey for healing, for peace, for understanding, and for joy.

  2. Stop making me cry without a tissue alert. I just prayed for her again, and for some reason, I prayed she would sleep well tonight. Makes no sense to me, but there’s the Holy Spirit for you, guiding my prayers for your incredible babe.
    Sarah talked about…From brain to paper

  3. Terra, Please know that Kendall is always in my prayers. She is such an amazing child. So happy & loving. You are also an amazing mommy, I don’t know how you do it. You are ALL in my prayers, saying an extra one today. Hang in there! Love you, Mimi

  4. Wow, Terra. I will be praying for you and Kendall today. I wish I could be there with you, reminding you of A. our Father’s great love for us and B. how hilarious we are by being completely inappropriate at a hospital. Hang in there, friend. Big hugs to you and Ben and the rest of the girls. xoxoxo

  5. Keeping Kendall in my prayers!!

    I know how you feel about having one more scar or having one more thing added just proving that our girls need that help. I have the same feelings every time they want to do something else.

    This will be good for her she will do well from having this port. At least that is what I am praying for for sweet Kendall.

    I’m surprised she is big enough to have a port. Maggie is too small for one they would only do a broviac on her if that is the route we chose. Anyway good luck today!!