It
has been quite some time since my last post - which is almost entirely good
news. We’ve been busy living semi-normal
lives with only the watermark of Aida’s health concerns. It’s always there –
medications, “bumps,” checks to Vanderbilt J
– but it generally doesn’t overwhelm our day-to-day function. At a glance, some people don’t even notice
it.
Of
course, a hot, humid, Nashville summer is coming, and people will see. I will
see – much more than I care to, but I really am so very grateful that the ugliness
doesn’t represent the imminent danger it once did. And while I have a tendency
to pre-worry about what we cannot know, I’m trying to focus on how far she’s
come. And I rely on my old faithful “Do
not worry about tomorrow for tomorrow will worry about itself…” or as The
Message puts it,
Give your entire
attention to what God is doing right now, and don’t get worked up about what
may or may not happen tomorrow. God will help you deal with whatever hard
things come up when the time comes. – Matthew 6:34
Aida
turned one a couple of weeks ago. And as
every parent ever said, “I can’t believe it’s here already.” It has been a transformative year –
simultaneously freeing & terrifying; desperate & hopeful, broken &
strong; jealous & grateful; surviving & thriving; exhausted &
exhausted. Then exhausted some more. Babies.
Geeze.
After
months of not writing, I’d like to be entertaining, but having not written in
so long, it seems there are too many important
things to say. Boring, but I’ll
control myself and save some for later – whenever that may be. As I said not writing is almost entirely good
news. Sadly, I started writing this post a couple of weeks BEFORE Aida's birthday...2-1/2 weeks ago! The bad news is that we are so
busy, I can’t seem to find the time. I
already get way too little sleep. Bummer.
***
A
lot happened in Aida’s first year. There
are several themes that echo in my mind and spirit over and over.
Grace
Trust
Peace
Provision
Community
Love
Sacrifice
(that of others, not ours)
I
could go on…
But
if you asked me for the first word that comes to mind in describing Aida’s
first year, it is undoubtedly “grateful.”
I am so happy she is alive – and happy she is happy! She seems to be laughing and smiling all the
time! I’m so happy we’re not at the
hospital every day and that she can have a bath any time she wants…though Mommy
& Daddy don’t manage to give her one but once or twice a week. I feel badly about that occasionally, but
honestly, she’s a baby. All the really
dirty parts are getting wiped all day anyway, right? J
I
don’t know how to begin to thank the people that have walked with us through an
eventful year; sacrificed time, money & energy; prayed countless prayers;
offered endless encouragement. I wrestle
with accepting what feels like the biggest tab we could ever owe. I am continually humbled as the support continues. We are overwhelmingly loved. There is unbelievable peace in knowing that
you have people on your side that will do whatever, wherever, whenever and at
whatever cost.
To
our families, village and friends:
We
can never say thank you enough for all you’ve done for us, but we’ll try. Know that you – all of you – have spent the
last year being God’s hands in an expression of His indescribable love. Until now, I have never truly felt the weight
of God’s grace and undeserving favor. It
is terribly humbling.
I’ve
told people recently that I don’t feel like I can ask anymore – from
anyone. I don’t have room to list all the
blessings we’ve received, but as I said before, Aida is alive, happy and making
us happy. How could I ask for more than
that?
Several
months ago, a family member told me that to not ask for help when it has been
offered is insulting. It’s true of my
family, and I know it’s true of God as well.
But that doesn’t make it any easier. Still, while we have much to be
thankful for, there are still significant needs.
***
If
I’m being honest, some days the watermark I referenced earlier is more
prominent than others. I took Aida to
the audiologist this past week for her second hearing test. It seems she’s still too little (restless) for
the doctors to have a complete picture, but there is apparently some hearing
damage. Honestly, we’re a little
surprised based on her responses to us.
Of course, we can’t know if what she hears is, “Aida, I love you” or
“Wah wah wah wah wah wah wah” like the nanny from the Muppets. We’ll go back again in 3 months, this time to
a doctor familiar with hearing damage caused by chemo. We’re praying for some sort of, “Oh, she’s
fine. She’s a baby. She just couldn’t sit
still long enough.” In reality, sitting
still or not, an “all clear” will require a miracle.
Last
month we went to the ophthalmologist and while they’re not yet ready to sound
the alarm either, we see that Aida’s eyes are not quite right every day. We will go back there in a couple of months
as well. Later this spring, we’ll head
to Cincinnati for scans…because while we can see some of the tumors on the
outside of her body growing, we have no idea what is happening on the
inside. If the one on her knee can grow,
so can the one on her brain. Today I
photoshopped a tumor off her knee so I could post the picture on Etsy. I felt guilty about it as I kept staring,
wishing it were reality.
Some
days, I sort of feel like we’ve crossed the line from survival and adrenaline
driven living into a deep breath, stay focused, we have a long way to go
phase. When our house burned when I was
in high school, the fire didn’t destroy the entire house. It was still standing, and some items were
salvageable. But what wasn’t damaged by
fire was affected by smoke and water. Those
things that we could save required
work to restore and many were left stained with smoke or its stench. At the moment, it seems the fire from a year
ago is contained, but we have a lot of cleaning up to do. How much, we just don’t know.
On
the other hand, some days I just think about how I’m going to contain her when
she really starts walking on her own.
We’ve seen a few steps so far, but she’s not very happy about it. Any celebration of standing or stepping is
promptly followed by sitting and limp legs.
Of course, I CAN. I just don’t WANT to.
***
Finally,
I’ve prayed a lot of verses and had them prayed over us. But perhaps the most consistent comfort has
been a song. I often change the “Him’s”
to “you’s,” but you get the idea. If Aida
ever said anything besides “Dadadada” and “Babababa” she would probably say this song is her second favorite
behind “Take Me Out To The Ballgame,” which is her absolute favorite. Anyway…
‘Tis
so sweet to trust in Jesus,
Just
to take Him at His word
Just
to rest upon His promise:
Just
to know, Thus saith the Lord
Jesus,
Jesus, how I trust you
How
I’ve proved you o’er and o’er
Jesus,
Jesus, Precious Jesus!
O
for grace to trust you more
Thanks
for trusting with us thus far and thank you for continuing to pray for…
*HEALING
for Aida’s eyesight, hearing, tumor growth (inside and out), immune system (so
that 2 days bug doesn’t last 6)`
*PROVISION
*RELATIONSHIPS
*BALANCE
*WISDOM
*PEACE
