October 7th and we are in the full swing of
school days around here! Preschool has changed a lot of things for our family,
and it has been so fun watching Addie grow- she LOVES school, and that makes me
a happy mommy! Meghan came through her MRI and surgeries with a great report
(thank you all for praying!), and no surprises, which is the best thing that
can happenJ
We are waiting to hear from our surgeon in Salt Lake City. He usually reviews
her images, following her progress until he decides it’s time for surgery. We
are hopeful that we still have a lot of time left before we have to tackle that
hurdle with her.
Today is special. October 7th for us is a milestone day- one
of those days in your life that you will never, ever forget the date, what you
were wearing, what the weather was like, and exactly how you felt at the moment
you knew your life was changed forever. It’s Diagnosis Day, 2 years later. I can still
feel tightness of my maternity top, damp with the remnants of ultrasound gel
clinging to my belly as I began clinging to hope the day we found out Meghan Grace
has hydrocephalus. 2 years later I let myself sit in that moment for a while,
and look back with amazement at how far we have come since that day. The grainy
black and grey scale of the ultrasound pictures are replaced with brilliant color
memories that have a precious smile, deep hazel eyes, and the brightest
sunshine in her voice. Today was hard 2 years ago, but I would walk through
that day a hundred times over again if that’s what it means to have this little
girl as a part of our lives. Overwhelmingly, because of God’s great
faithfulness we have grown as a family in this time and I am flat on my face
grateful for every second of hardship as it has meant seeing His work in our
lives. I love being able to reflect on a period of time, and see how tangibly
His presence is woven into our experiences. It is evidence of a love greater
than I can fathom, and infinitely more than I will ever deserve- but thas is
the greatest miracle of all. That regardless of where I have been in life,
where I am at now, and whatever the future may hold, His love is unchanging,
and His grace covers all. Which is a really, really good thing since I KNOW
that I will need a lot more of it in the years to come.
Two years later we are still piecing together the Meghan
puzzle. This month is a marathon of follow up appointments, and this first week
proved that we are still in for some unexpected surprises. We met for routine
follow up with Meghan’s nephrologist. She has cross-fused renal ectopia (which
is really fancy for her kidneys are snuggled up together). We were expecting a “she’s
been fine from a kidney standpoint, see you in a year…”, but instead we found
out she has distal renal tubular acidosis (which is fancy for her kidney’s won’t
excrete the right amount of acid into her urine, so it backs up into her blood…can
you tell Addie and I have been reading a lot of Fancy Nancy books??). As
diagnoses go, it’s not a terrible thing, but it does mean that she will have to
take another medication 3 times a day for the rest of her life. The up side is
that it may actually help her to start growing, and have more energy overall.
Trivial as the diagnosis may be to some, hearing that there is “something else”
wrong always lands us back into that familiar place of diagnosis day, stirring
up those old feelings of dread. This time though, as I was driving home from
the hospital (covered in pee by the way…they really need to figure out a better
way to do urine collection in un-potty trained kids. I mean, who cuts a HOLE in
the diaper and expects whatever doesn’t make it into the bag to somehow
miraculously stay IN THE DIAPER??...I digress…)….I was mentally processing what
the diagnosis will mean for Meghan and starting to feel anxious over the whole thing when I
felt in the quiet of my heart, “I already
knew”.
Anxiety turns to praise, sadness to thankfulness as I remember that
nothing is a surprise to the one who knit her together.
So onward we go, trusting in His goodness, and singing of
His love.
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| Looking very grown up! |
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| Getting into trouble... |
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| Helping little sister with some sitting |
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| Even 4 year olds can tube feed! |
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| One of her favorite toys:) |
"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17
