Monday, August 9, 2010

Looking Forward

Grandma called today. We've apparently gone too long between posts. I apologize. We've been preoccupied; standing in awe of the month that is now behind us. Did I just say that? Yes, the Fontan is behind us. Pinch. Pinch. Pinch. I'm still a bit reluctant to ring the victory bell, but we cannot deny the amazing grace that has attended our family in the last 30 days.

One month.
Just one month to go from this:
To this:


Off oxygen. Recovering. Trying to keep up.
The strength of his will takes my breath away.
I'm about to call act three of this beautiful nightmare complete.

This is Mac's last xray. Almost crystal clear. Almost. Just a tiny amount of fluid remains in each of his oh-so-oxygenated lungs. He's sat-ing between 88-91. And that's at Salt Lake's sky-high 4,400 feet above sea level. I still cannot quite believe it, trust it, or begin to exhale myself.

Of course, the meds continue. McKay receives 3 doses a day of diuretics and 1 aspirin. He's good at the aspirin. He's taken it everyday of his life. He opens up like a little bird and I drop in the chewable tablet as he toddles away. Easy.

The diuretics are a different story. Clenched teeth. Screaming. Tears at the mere sight of the syringes. He's learned to hold the liquid in the back of his throat and gargle it back out. We do our best, but I'm sure he only swallows about two-thirds of his dose. I dread giving it to him. But I dread the thought of going back to the hospital more. So we'll endure three more weeks of it and then put it behind us and try to forget.

Although I'm not sure forgetting is entirely in the cards.

I made the mistake of reading McKay's operating report. I remember only three horrible things from the two page blow-by-blow: Oscillating Saw, Heart-Lung Bypass - 62 minutes, Circulatory Arrest - 21 minutes. And it's those chilling phrases that make it hard for me to say "No" to chocolate covered pretzels before dinner - because they make him smile.



McKay is still very much in recovery mode. He's still napping 3-4 hours each day. He still lays down in the middle of the floor mid-play and calls a time out.
But he gets back up.
On his own.
In his own time.
The way he always has and the way, I suspect, he always will.

Just yesterday he clawed his way up two flights of stairs to his room. Last week he made just two steps before he swooned backward and let me catch his fall. Progress. It is sure and steady and remarkable.


These two crazies are fiercely protective and seem to know just what Mac needs. They have been patient beyond their years, understanding beyond expectations, and just the right medicine for a little brother who idolizes their every move.


We are blessed. Many have apologized to us for having it "so hard." I must respectfully disagree. In the spectrum of health challenges that could be ours, Mac has taken us to the edge a couple of times and then turned his train around pronto and headed directly for a happier track. He makes this journey about as easy as it can be. As for the fact that we must be on this journey at all? My two cents is this: No matter your challenges, life is about as hard as you decide it's going to be. If you choose to wake up everyday, curse the heavens, and declare "woe is me" before rolling out into the world then, yep, life is hard.


And the real tragedy in self-pity is that it is not what God intended. I know He blesses us with exactly the circumstances we need to grow and learn and become more than we deserve. I will teach nothing less to my kids because I know it to be the truth. I've asked and I've been answered. I want you to know that I know that.


Some days joy comes more easily than others. But it's on the hard days, the days when you must choose joy, that it tends to be the stickiest, stay the longest, and taste the sweetest. It's on those days that it surprises you with how simple life really is and how deeply you appreciate what is yours - all of it. We choose joy.

14 comments:

GG said...

Glad you payed attention to Grandma.
I have wondered every day how the follow up went the second Monday and every day...is he doing well are you all ok?
I will sleep better tonight knowing that things are going well.
Take care.

Patti said...

If only everyone could know what you know, and choose joy.
I remember Matt said in Mac's baby blessing that his older brothers would be protective, and they are. Your three sons are precious.
Glad Mac continues to improve, because we don't want you moving away from this 4,400 ft altitude!

ann said...

Choose joy, choose hope. Girl, you can write! Hugs to the boy.

Jenny said...

I am glad you let him have the chocolate! Life is too precious to worry about small things like that:). Thanks for the update. It is good to seem him doing so well.

Knudsen's said...

I just love how you share your sweet words of wisdom with all of us. You are so amazing with your ability to find a silver lining on the darkest of days. Bless you and your sweet family. I wish nothing but good health and wellness for you all.
Camille :)

likeschocolate said...

He looks like a very happy typical little boy. Yeah!

Camille said...

I love this... "life is about as hard as you decide it's going to be. If you choose to wake up everyday, curse the heavens, and declare "woe is me" before rolling out into the world then, yep, life is hard."
Thank you for your amazing insight. It has been such a joy to read about your journey. I tell everyone that will listen about your blog and your terrific family. It isn't surprising that McKay is such a little fighter...look at his amazing mother.

PamO said...

Mindi, Thank you for your words, put together so beautifully. Glad McKay is thriving and getting stronger! Praise the Lord!
Heart hugs,
Pam

dg darling said...

Thanks...I needed to "hear" those words today! So glad cute Mac is doing so well. What an adorable little guy! I'd give him the pretzels too!!!

Cannon Family said...

Inspired! As always. I just love you!

Joel and Angie said...

Thanks Mind! This is just what I needed to hear. What wonderful boys you have. I am so thankful to hear of how well your little Mac is doing. Keep it up!

amy16 said...

Hey Mindi, I've been stocking your blog for awhile. I'm so glad to hear your little one is doing so well.

Do you remember the Barnum's. Cyd and Julia? Their little sisters baby had liver failure and had transplant 6 months ago. You should check her blog. liverforlulu.blogspot.com. She just posted the same post you did here.

You moms are amazing. Keep up the good work.

Summer said...

Love, love, love this post!! Thanks for your positive outlook on life!! Glad McKay is doing soooo well!

Love,
Mason's Mommy

Kenny + Michelle + Charlie said...

I some how happened upon your blog sometime ago and from afar enjoyed your writing and perspective on life. My husband has a brain tumor and is coming up on 2 years since partial removal, so although our medical situations differ, they are in some ways the same and we often reflect on what if everyone else could understand to choose joy. This post struck me and I have come back to read it several times. Thank you!

Your good outlook and attitude takes you far and makes your McKay a winner in his fight.