If there is a vessel called hope
gliding along amidst raging waters in a storm called hydrocephalus, today we
got to climb aboard. While hope has always been present, the last twelve weeks
since Meghan’s diagnosis have been for me about learning, growing, and
accepting that things are going to be different than what we expected. As we
face so many unknowns in the weeks to come the type A, color coded calendar me
has been trying to function in the middle of uncharted territory and it has
admittedly freaked me out a littleJ I realized about 12 weeks ago that I couldn’t
do this on my own and I’m glad I got that out of the way in 2011. It frees me
up this year to move on to completely surrendering to God’s plan for my life.
Part of that plan included Meghan Grace right from the start even though I have
no idea what her life or mine will look like once she’s here. I have been
researching, planning, and trying to put as many pieces of the puzzle together
ahead of time as I can, but ultimately it is out of my hands, and completely in
His. Though it has not been an easy process, through days where I am at peace
and days where I am fearful, I am aware that this time has allowed me to
prepare emotionally for the next part of this journey. For that I am thankful,
because come what may it was intended for me, for Meghan, and for our family.
So why is today different? We met
our Neurosurgeon today, and I’m pretty sure she said the actual word “hope”
about 8 times in 45 minutes. She told us many stories of kids that she has seen
who do very well after being born with severe hydrocephalus- even one who she
actually operated on who was in medical school intending to go on to
Neurosurgery because of all he had been through in his life. We know we will
take things one day at a time, and rejoice over every accomplishment, taking them all as tiny miracles no matter
how simple or complex they are. Being in the medical field I know how important
it is to be realistic, present all the options, and maintain a firm grasp on
what really is right in front of us.
However, going through this as a parent I cannot begin to describe how thankful
I am for someone that offers hope in the face of a poor prognosis. We know
there is a spectrum of disabilities that can come out of this situation, but
leaving us room for hope allows us to be the best parents we can be for Meghan.
Since the doctors are not 100% sure
what is causing her hydrocephalus, Meghan will have another Ultrasound and or
MRI of her brain right after she is born to help identify the cause and make
sure that getting a shunt is the right course of action. From the way things
have progressed it sounds like that a shunt is very likely. The timing will be
determined by how stable she is after delivery. We also met with the Fetal Care
Coordinator and saw where we will be delivering her at Cleveland Clinic Main
Campus, and walked through the delivery day’s events as best we can
“imagine”. The general consensus is
there is an average stay of about 2 weeks in the Neonatal Intensive Care Unit
for Meghan after her surgery, so we had time to see where family rooms are, a
playroom for Addie, and also talked about getting a room at the Ronald Mc
Donald House so that I can stay and be close after I am discharged from the
hospital. Provided she doesn’t arrive on her own time, we are scheduled for
delivery on February 23.
I am excited to see what God will
do in our lives this year. I know there is a reason I have been challenged to
grow as much as I have in these past few months. I am thankful for the gift of
Meghan’s life, thankful for the gift of truth, and the way that my faith has
been increased because of that truth. My resolution this year is to simply live
in the moment and be content with today. Tomorrow is not promised, but strength
and hope for today, for this moment, are promised abundantly.
“Let
us hold unswervingly to the hope we profess, for He who promised is faithful”
Hebrews 10:23
Praying for all of you. For God's very best for each and everyone of you. God has truely blessed your precious little one with an amazing family. She will be loved and cared for in only the way God can provide. Our God is an amazing God especially in the midst of the storm. Know our prayers and heart are with all of you.
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