Day – 3

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Time here is surreal. It crawls by at some moments, (e.g. when you are with an irritable Kate). And flies at others. I can’t believe a week is almost over. Today is Day -3.

Day 0 is the day of the transplant.

April 28th, the target date I have in my mind for going home, seems so far away.

Time is warped here.

Clocks move quickly and slowly at the same time. A moment can last forever and also pass so quickly. Kate can look good at one minute, and change the next. There is no solid footing to be had, and I have learned that the search for it is futile in this experience. I need to surrender to what is and let this happen and unfold, while being as vigilant as I can. I marvel at how we got her – how did this happen?

There is nothing more to do. One foot in front of the other, pace myself hard – but intelligently – know when I need to back off and know that I have another gear in me when it is needed most. See the race course as it’s been laid out. Push hard for that awesome outcome and be able to let go just a little of expectations when I need to

It is a Marathon.

A true physical and emotional marathon and I am grateful I have the experience as a distance runner to carry me through. This is not for the faint of heart. Everyone here is holding onto their values and courage with their nails dug in. Holding onto the things that give them strength. Foundations they have built over a lifetime. It is amazing to see how the human spirit can thrive in this type of environment – what people draw upon with this kind of suffering and stress. Raw fear and raw hope.

Kate is part of that for me. She has helped build me up to be the mom I need to be in this moment. We are a unit she and I. We make each other whole. Her laughter, her playfulness, her excitement at the simplest things, and even her tears.

I feel her strength and bravery and it helps me to fortify mine. That is an incredible gift that she has brought to my life.

 

Julie

2 Comments

  1. Hearts and thoughts are with you…
    Breathe. You are not alone. <3
    Blessings to you and your courageous Kate!

    Reply

  2. Hi Julie! I just found your blog and absolutely love it. I work with a little girl in Charlotte, NC who also has mito and have actively become involved in spreading awareness and fundraising for this disease. I want to learn as much as possible and know as many mito warrior stories because everyone is different and this disease is perplexing. I want to be the best caretaker possible for Lila. I was wondering if you would mind emailing me privately so I could ask a few questions. Jmfreed1@gmail.com hope to hear from you soon!

    Reply

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