Saturday, August 3, 2013

Surgery, tests, and the gift of suffering

(((Uhhh, apparently I wrote this while in the hospital and never published it.  Sorry :/  Better late than never I guess!)))

Dominic worn out while getting an EEG to check for seizure activity
Dominic is coming along quite well.  We are now in week 3 of this admission and he is doing pretty well so far.  He is still off the vent but is now needing supplemental oxygen.  Not much, just a whiff... just enough that we'll have to lug that big ol' oxygen tank around with us.  But, no complaints here, at least he is still breathing on his own!  He has also had apnea when asleep so at some point this week we will be having a sleep study to determine exactly how often and from what location in the brain the apnea is originating.  The results of this study will help us determine if we will continue off the vent at night or if he needs nighttime ventilation again.  God's will be done.

A perk of the hospital life: sitting in your baby lazy-boy watching a baby movie :)
Tomorrow Dominic will have his surgery, MRI, ABR (sedated hearing test), and nerve conduction velocity test (to check the progress of his hereditary spastic paraplegia).  So, start sending those prayers this way!  I'm going to be sure when they need to start his IV tonight that we avoid the issues we had last week and forgo the IV team- I want a plain ol' floor nurse- they seem to be a better stick.

As you may have picked up from my *subtle* distress on my last blog, living in the hospital away from our other kids and Mike is trying.  Thankfully I'm married to the best man I know and he took over for 4 days so I could rest and gain some perspective.  It was awesome to be with the big kids, my sister and her family, and my parents in Oklahoma for a family reunion.  We got to see extended family and the kids literally wore themselves out swimming and playing with their cousins.  It was a nice break- much needed.  A break from the hospital is always therapeutic, helping you to once again be charitable and patient with the tiny annoyances of living there.  It is not big mistakes or blatant transgressions that get to you at the hospital, it's the everyday annoyances, the tiny pin-pricks that build up over time.  Suddenly you look up and something the size of an ant suddenly looks like something the size of an elephant.  Then you become one of "those moms,"  and nobody wants to be one of those. 

Something that has helped this admission (uh, except for that one day when I wrote that blog... sigh) is reading this book titled  "He Leadeth Me" by Fr. Walter Ciszek.  He is a priest who was arrested in Russia and held for 15 years, without anyone knowing what happened to him, all the while suffering in prison and labor camps while finding God's will in the whole matter.  I read something yesterday that struck my core.  Amid the horrors of hard labor in a prison in Siberia he realized that what he was presented with that day was God's will and it was his job as a priest and Christian to consecrate that day, that situation and give it back to God.  He says he learned you are not to endure your daily trials, your monotonous work, your unfair and difficult situations, but rather you are to embrace them with full knowledge that what your are enduring is God's Most Holy Will, a gift He has given you to bring you back to Himself.  I can see that truth in the daily grind of hospital life, the daily rituals of care for Dominic, lack of restful sleep, or life with a child such as he.  This is not a life to be endured, simply to 'get through,' rather this is a blessed life where in His goodness our Lord has given me these trials as gifts.  Gifts, if I accept them, to be given back to Him and along with it a little piece of myself until all that remains in me is Him.

In and for Them,
Thanks to one of my PT friends who spoiled me with a box of Cheeze It's yesterday, Dominic had his first taste- he was a fan.

The boy who stole my heart

It's not everyday that you fall in love.  It is one of those rare occasions that can most likely be counted on your fingers... the day you realized you love the man you eventually married, the day your children were formed in your womb, the day as a child you understood the attachment to your parents is more than a need for them, but a  genuine love, the day you become protective over your siblings and realize you would die for them, the day you give yourself to our Lord.  These occasions are few and far between and mostly always leave a lasting impression on your soul, a brand of sorts that never can be removed.  Yesterday was one of these momentous days in my life.  When Mike came home from work I revealed my confession... there is someone else now residing in my heart.  A baby saint much like the baby saint I live with, sharing the same strong name and the same purpose in this world- to reveal the goodness and glory of God through a sweet, short life that can only be "useful" in revealing the dignity of every single human person created by the Almighty.  My new love's name is Dominic K.  It only took a moment for him to brand his little self into my soul forever, for me to be filled with joy and happiness, hope and sadness, and motherly protectiveness; to realize I will love him from now on.

Baby saint Dominic K.
He shares a secret residence in my soul with my own Dominic.  A special place that combines love with worry, joy with pain.  A place the Lord gives us all to hold the most fragile, our children.  It is in this place that we can encounter God, in this place that yesterday I did encounter God.  Through this baby saint Dominic the strength and power and goodness of our Lord shined through.  Through this little man who will soon have the privilege to return to his Father, that Christ shows his goodness, his faithfulness.  He reminds us that this world is fleeting.  That our reward is not here, but in the next life with Him, where we will share eternity in his divine presence, praising him forever.  My new love, just as my own Dominic, is a light in this world that can do nothing but bring our minds to heaven.  We complicated adults are so very good and muddying everything up, making life so confusing.  Our two little saint Dominic's though give us clarity.  They show us the joy that is freely given by God and remind us we are only to be faithful and we too can possess that same joy, to a small extent here on earth and to the fullest extent when this life is over.

I wonder what our D saw... he was instantly happy and looking around when he was placed near his new friend.
I was struck yesterday at the beauty of God's will in our lives.  Watching Dominic's mom care for him  and his special sister Felicity, I saw the beauty and perfection of God's plan or our lives.  Not only for those of us with special babies, but for all of us.  It is in the mundane, ordinary tasks of daily life that we can give honor and glory to God.  By doing our daily work faithfully, however difficult it is, realizing that the work placed before us is God's will for us at this instant, we can praise him.  By not wishing for a different station in life, but by embracing the conditions we've been given at this very moment, we can consecrate, make holy, the ordinary daily tasks and give it back to our Lord as a gift.  I so often fall into the trap of wishing things were different, of become frustrated with the mundane chores, the routine, and day in, day out monotony of life.  I was reminded in a powerful way yesterday that it is precisely in the ordinary that I, that all of us, are being asked to do his holy will.  It is through this work that the Lord has given us that we can love him back in a concrete, tangible way.  For us momma's of baby saints, it is through our Dominic's (and our other kidd-o's) that we can fulfill his holy will. What a supernatural blessing and honor!  The very fact that the Lord loves us (the world) so much that he gives us glimpses into eternity through the gifts of special babies like this makes my heart flutter.  It is through the perfect little ones (both babies with and without special needs) that his simple, perfect, spotless love shines through.

Sweet Momma K lovin' on Dominic K.
With his mom's blessing, here is the younger of the two baby saint Dominic's.  It is my hope that his sweet face, his perfect existence will change your heart as he did mine, will help you to look toward things eternal, to not only tolerate the mundane of daily life, but live your current station in life in a way that you can give your daily tasks back to our Lord as a gift at the end of every day.

Dominic K.'s biggest sister and Mary Grace giving him love
Dominic's biggest sister may be the next Mother Teresa... God has given her the opportunity to learn to love in a very real, mature way with her siblings.
Little saint Felicity, Dominic's middle sister
"Hey-a buddy! Give me some of that milk!"
Dominic K's momma getting cuddle time with our baby D
Sweetest boy in the whole world :)
One last cuddle walking our baby D to the car
Sweetest Felicity taking a nap
Such a sweet little girl, big sissy M.
Baby Dominic K loves sticking his little tongue out at Momma K
Happy little saint :)
"Aha, so this is what a saint looks like"
Dominic K, Dominic S, and Felicity having some floor time
Saint Dominic, pray for us!
Totus tuus!