A Collection of Essays

Alexa’s Story…

Dear Reader,

I have written about five different posts only to delete each one. They felt superficial and somehow that I was trying to force the words onto the paper. I can’t write like that – I have lived so much of my life in a space of fearing vulnerability that any ounce of superficial writing feels off. Maybe this is God’s way of saying – do not be afraid. Or maybe He knows if he gives me any ounce of contentment in the superficial, I will take a mile.

Whatever the reason I know I need to keep sharing from the deep places within me trusting that God has the rest covered.

A few nights ago, I laid in bed thinking about my daughter. She is fierce. She puts up with minimal crap from other people – it gets her in trouble sometimes BUT I do not want her to lose that spirit. She needs to hone it a bit, but I know God has that part.

EVERY great leader was called bossy when they were younger – she is no exception.

She is also immensely tender. Sometimes I know she just feels the hurt of others.

It is not unlike her to crawl into my bed after I have had a long day and just ask me if I am ok. It’s like she senses I just need a hug. Most people don’t see this side of her BUT I am so grateful that I get a front row seat.

I remember as a baby if someone held her who was nervous or upset, she would just cry. I think she felt it then.

So, in the summer of 2018 when she was set to have a major surgery, I just felt like I needed to hold it all together for her. I needed to be strong so she could be strong. I felt that if she could feel my strength, she might grab a little for herself.

Alexa was born with a rare bladder condition called epispadias. It’s a one in five hundred thousand kind of thing. Due to the low number of children with this condition there are only a handful of doctors in the WORLD that can perform the surgery she needed. Yes, I typed WORLD.

One such doctor just happened to be in Philadelphia, PA.

Philadelphia is a long trek from the Pacific Northwest and her surgery would require a month-long stay.

To say there were A LOT of moving parts to make this thing all come together would be an understatement.

AND I just went into the full mom mode – organizing the apartment, scheduling flights, FIGHTING with insurance to cover her surgery. You name it I was all over it. My husband did help but honestly, I just kind of took over and made sure things happened. I see now that I was probably distracting myself from thinking about intensity of her surgery.

The doctors told us her surgery would be 8-10 hours long and there would be at least four doctors in the operating room. The surgery was a coordinated effort between a urologist and an orthopedic surgeon. Part of the surgery required that her pelvic bones be broken and aligned closer together. After surgery she would be wheelchair bound until her bones healed and then would relearn to walk again.

As intense as this all was, I felt a sense of peace that she would be ok.

Yet, for some reason the portion about her bones being broken was not sitting well with me. AND for the life of me I cannot tell you why this mattered so much. I think perhaps it was the thought of a doctor breaking her bones on purpose that just made me ill.

Looking back, I know it was irrational. These doctors were trained in this field and breaking the bones was just a part of the process.

BUT every single time I met with the surgeons whether via email, on the phone or in person I asked about this.

Are you sure you must break them?

Is there a chance you don’t have to?

I am positive the doctors thought I was nuts. They had performed this surgery for twenty years and every single case required the bones to be broken.

Why would Alexa’s case be any different?

I prayed so much leading up to her surgery and each time I asked God to protect her bones.  

The surgery was set for a Monday in July and we arrived in Philadelphia the Thursday prior to prepare. We spent that weekend leading up to the surgery enjoying the Jersey shore – it was a welcomed distraction.

That Monday we arrived at the surgery center at 6:00am. In preop they gave her a medication that they refer to as “giggle juice” to calm her nerves and help her relax before surgery. I joked that they needed let parents in on that juice!

And even as they wheeled her out of the preop room, I thought about those bones. I prayed silently that they would be preserved.

I want you to know that the next eight hours were some of the longest hours of my entire life. My sweet little six year old was on an operating table with frankly, a bunch of strangers and I felt completely helpless.

The hospital was honestly wonderful – we got updates on her every hour BUT somehow that did not ease the great anxiety that welled up within me that day.

I spent a lot of those eight hours trying to distract myself. AND when that did not work, I went down to the hospital chapel to pray.

The chapel was a small circular room that was dimly lit. There was a box in the center of the room where you could write out your prayer and place it inside.

I remember writing on a small piece of paper – Lord, protect my girl.

I did not have a lot of words. I think the emotions of the situation were just too great, but I knew God heard me.

I kept returning to that chapel throughout the day – it was really the only space in the whole building where I felt some sense of peace.

And finally, around the eighth hour they came to tell us she was out of surgery and we could go see her soon.

I was so anxious to see her – to just grab her little hand and tell her she would be ok.

I really did not care anymore whether her bones were intact or not – I was just so thankful that the surgery was over, and she could begin to heal.

That first moment I saw her was hard – her legs were wrapped in these yellow booties connected to weights that prevented her from moving the bottom half of her body. The doctors had not prepped us for that portion of recovery and the shock of it made it hard to see her like that.

Yet, at any rate I was thankful. I knew she was going be ok.

A few minutes later ALL the doctors arrived to debrief us on how things went. We got the ins and outs of the operation and the doctors felt they had performed a successful surgery but only time would really tell.

AND then the orthopedic surgeon turned to me and said – after much deliberation in the operating room we chose NOT to break her bones. Her bones were connected enough that we felt by placing a small metal plate on the front portion of her pelvis would secure everything in place.

Even as I type this today, I am crying.

This had never been done. They had NEVER NOT broken bones.

BUT God knew. As hard as it was to go through that season of our life, He filled us with this grace. He gave my girl a gift that day– He protected this mama heart and He made recovery (while still NOT easy) for Alexa a little bit easier.

I still feel so grateful for this moment. We needed God that day and He sure did not let us down. He showed up big.

This moment gave me the extra strength I needed to get through the next months ahead with her. I needed to be strong for her and God knew I needed Him to give me that strength.

And looking back I know Alexa received a gift through this experience – when life is hard, I can remind her that she has already overcome so much. I can remind her that God is watching over her, protecting her very bones.

He is faithful like that. May you find strength today to face whatever lies before you knowing He cares about your very bones.

Until next time my friends,

Kara Jess

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