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Kevin and I just returned from a few days in Oregon.  I wrote Grace’s name in the sand when we are at Haystack rock on Thursday.  Friday morning when we visited again her name was gone.  The ocean had erased it of course.

Grace’s major overhaul has not gone smoothly.  Adjustments to her diet and medication have been painful.  She’s been tired and not doing well at therapies.  Her seizures have been harder but fewer, so we are left trying to decide if that is really better.  We’ve had talks directly with the epileptologist (you know things aren’t going well when the doctor calls you himself).  Seizures have interrupted horse riding and baseball games.   There have been huge blood draws, frequent changes, and trips to various doctors.  This is not at all what we want for her.

Her new leg braces have arrived.  Big things that require her to wear long, hot socks on summer days – they like the others are leaving sores on her legs after she wears them.  On the plus side…she does seem to enjoy walking with them on.

Late May and early June was a series of meetings to transition her to kindergarten.  It felt like it was more about money then what was best for Grace.  Our ability to keep home health nursing was in jeopardy because the school can take over her care.  We got to keep the nurse for now, but it will be revisited once they know her better.  I’m left anxious for what it will actually be like when she starts school in August since there’s been all this stuff and she’s not even an official kindergartner yet!

Her brother at six months of age is doing things naturally that we’ve been working on for years with Grace.  Don’t get me wrong — I celebrate with him!  I also find myself grieving for her.

I don’t even know how to describe how it is to manage all of these things.  Keep track of them.  For Kevin and I to keep on the same page, splitting duties to best meet the needs of both our kids.  We somehow both work as we do it too.

I admitted to Kevin when we are in Oregon that I’ve stopped singing along with some of the songs on the Christian radio station.  Any song that talks about bringing on challenges to better experience faith, or let me bend but not break – I just stay quiet.  I would not want God to think even for a second that I am asking for more difficulties, more chances to test my strength or my faith.  I realize my theology isn’t exactly right – but I’m overwhelmed and at this point it makes sense to keep quiet.

So having told you all that – let me get back to what I was telling you about the sand.    I realized (with the space to think that time away can bring) that this time of major overhaul  and transition to kindergarten – like her name in the sand – will become a thing of the past.    Part of her story, but not the whole thing.  I just have to hang on until the tide comes in and resolves this adventure so another one can begin.

Mom and Dad – Thank you for taking care of our three kids (2 human, 1 hairy) so Kevin and I could get away.  You were so selfless as we grew up- and you continue to be.  I am so grateful for all you’ve invested in me – and all that you’ve invested in my family.

Joy

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