Monday, March 18, 2013

Happy Birthday (Month)


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

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