The next step

Over the last fortnight, I have unpacked our friends house.

When we came to stay they had been here only a short time so there were boxes everywhere.  I threw myself in with abandon.  Every box has been opened, every book shelved, every ornament dusted and a place found for it, every item of Tupperware paired with its lid.  I ran out of shelf space for the books so bought myself a bookshelf for my birthday so I could keep going.

As I sit here I have an immense sense of satisfaction.

I never used to be like this.

I never used to clean when stressed.

But somewhere along the way I started cleaning parent rooms in the hospital at midnight.

I think it's because I feel like I am falling.



I like control.

I like being able to predict what will happen next.

I like knowing my options and choosing what to do next.

I sorta, kinda, little bit know what is going to happen next in the same way that a skydiver knows that the ground will be intimately involved in what happens next.....one way or another.




Kaylee's general surgery review will be on the 11th of this month.  At this appointment, I will find out if Kaylee's tummy surgery will  go ahead and what timeline we will be looking at.  But with these answers, as with most answers I get these days, come a million more questions.  Will we stay here with our friends close to the hospital until Kaylee's surgery or go home to Tassie?  What button (the type of feed tube placed through Kaylee's tummy) options do we have down the track and how/when/where will we be dealing with changes to the type of button?  There are several ways the fundoplication (part of the surgery where they wrap some of the stomach around the bottom of the oesophagus to close it off a bit) can go wrong, how will we deal with it if some of the more common complications occur?  How long are we likely to need to stay around Victoria?   Who will be our go-to person for tube management once we leave the hospital?  What about when we go home to Tassie?  What will we be doing about her feeding orally and when?  Who will be involved in those types of decisions long term?  When/where/under what circumstances will we have her fundo assessed down the road?

And on and on and on and on....

And like a cartoon coyote putting up an umbrella while plummeting off a cliff, I shelve books to carve some sort of order out of the chaos that my life has become.

Early in the morning, I go for a walk by the bay.

To exercise, to get a few moments of solitude before plunging into life in a household of 14 (4 adults, 10 kids under 8 - sometimes we feel a little outnumbered), sometimes to cry and always, always to pray.

The other morning I was so tired I could hardly move but I walked by the bay and watched the sun come up, the birds wake up and start their day and the earth take a deep breath to start the day.  I sat on an old concrete cylinder in the sand among the grasses and succulents, my whole body drooping with weariness and I cried.

I told God that I do NOT want to know if this surgery will be the answer we are looking for.  I don't want to know if Kaylee will walk, talk, live independently.  I do not want to know if my other kids will handle their sister's disability with grace.  I do not want to know how my marriage will weather this storm.  I don't want to know about medical staff, therapies, where we are going to live, what we are going to do.  I don't want to know any of it.  The knowledge I have is already far too heavy for me to carry.  I want to skip all of it anyway.

All I want to know, all I want to see, is my family in heaven.

Kaylee chowing down on the fruit of life before running by the river with her brothers and sisters.

Watching them with my husband.

All the crap, vomit, blood, pain, heartbreak.........gone.

I want to skip to the end.

I looked down and saw hundreds of small shells.

I thought absently that I should gather some up to teach the kids about the Fibonacci sequence.

I don't even know what numbers are involved in the Fibonacci sequence.




And God said "I do"

S

"You don't always know the math of what I do.  You don't always understand where I am going.  You don't know the end result.  But I got your back.  Like the snail that never sees its own shell and the butterfly never sees the beauty of its wings - you don't see the pattern I am making in your life right now.  But trust me, the math works out.  And one day there will be no more crap, sweat, blood, tears, pain, therapy, doctors, red tape, vomit, needles, drugs... one day it will be beautiful."



"You are tired?  Rest in me.  Is your load heavy?  Give it to me.  Are you worried?  Trust me."

So I will keep doing what I can about the things I can do something about.

I will keep moving forward.

I will take the next step, even when it involves stepping off a cliff.

And I will leave the math up to God.

(by the way, I looked it up.  The Fibonacci sequence 1, 1, 2, 3, 5, 8, 13… Each number is the previous two added up. The ratio of two consecutive numbers approaches 1.6180…, or (1+Sqrt(5))/2, which is called the Golden Ratio.  It's brilliant)