A Day in the Life of Jonathan...

Every day when I wake up, Mommy feeds me.  I’m pretty picky about new textures, so I still prefer to eat mostly from her.  She doesn’t even try to feed me breakfast because I don’t take to it very well.  After I eat, sometimes she gives me a sponge bath because it’s much easier than getting into the water.  I can’t feel much from the waist down, so this also affects how I control (or don’t control) my poop!  This can make baths very interesting, so I think she prefers to just sponge me off right now.  Sometimes, though, she lets me sit in my booster seat and play with some water on my tray since I don’t get to do this in the bath. 

Usually after this, I hang out on the floor and in my chair just playing and watching my brother and sisters.  Mom helps me move from place to place and reposition, since I’m not scooting around any.  I just got some new glasses because my right eye is stronger than my left eye.  Mom has a lot of fun right now because I like to pull them off and won’t keep them on!  Most mornings I take a little nap.  A couple of days a week, after my nap, my physical or occupational therapist comes and works with me.  They are great and help me learn to do new things!  It’s very hard work, but I enjoy doing new things and working to gain more strength. 

I eat a tiny bit of lunch, but only pureed baby foods.  Mom’s working hard to introduce me to new temperatures and textures.  One of my favorite things to do is “eat” food through a mesh feeder, so I get all of the flavor without any chunky things in my mouth.  It’s taking a while, but I will be able to eat other things soon.  I already have my first two teeth and more are on their way.  After I eat some lunch, I’m pretty tired again and take my afternoon nap. 

In the evenings, I hang out with my family again.  I like this time because I get to hang out with Dad some.  He makes me laugh and smile.  Mom also practices some of the things I’m learning.  Right now, she’s showing me how to roll from my back to my belly by pulling on things around me.  I can hang out on my belly, even sleep that way, by I like to lay on my back and play. 

Some days, we do some running around and get errands done around town.  Mom takes me in the stroller or my car seat since I can’t sit up in the cart at the store.  I love to be around people (prefer them over toys!) and like to be on the go too!

I’m pretty set in my bedtime routine.  I like for Mom to feed me at the end of a long day, and then she lays me down to sleep.  I know she wishes that I could sleep completely through the night, but I get a little stiff at night or hungry at times and that makes me cry out once or twice a night. 

I know that my life looks different than other little guys my age, but I’m working hard and growing every day.  With all that I’ve been through, I feel pretty blessed.  I am surrounded by people who love me and want the best for me.  And Mom and Dad are sure to tell me often how much God loves me and that He must have a special plan for me since He created me just the way I am.  I also hear Mom at different times talking softly to me about the day she will get to see me completely whole one day, walking with Jesus.  From the way she describes heaven, it’s going to be an incredible place.  Mom and Dad both pray over me, asking that my life will point others to God and shine as a testimony of His goodness.  I’m so very thankful.

hi-a-tus

hi-a-tus "An interruption in time or continuity:  break; especially:  a period when something (as a program or activity) is suspended or interrupted"

That definition sums up the lack of posts since the end of March when Jonathan left the hospital.  I've written hundreds of mini posts in my head, but none of them have actually made it online.  In fact, it's been so long since I logged on, that I had to look my password up again and also found that blogger has a whole new face that I'm trying to navigate!

I guess I needed the hiatus.  When Jonathan first got home from the hospital again, life was consumed with taking the next step and getting things done.  Then, as he healed and my fears calmed, I've found it hard to put into words what I am feeling and experiencing.  It was all I could do just to live it!

I'm talking about living with our precious son who brings a whole new reality to our family.  And living in a state of change while we await the next step for our family.  And living with a great deal of uncertainty about anything from when our next trip to the hospital will be, to what school will look like this year for our children.

And much has happened in our family since the end of March.  Jonathan went back into the hospital in May for hernia surgery.  We took a trip to FL for my sister's wedding.  My husband is now working, in an entirely different setting though with a similar emphasis.  We've "almost" bought a house and are searching for a much-needed second vehicle!  Not to mention, enrolling our kiddos in a home school coop (a first for all of us!).

I feel as though the entire last year was a bit of a hiatus for our family.  A sudden break in all that was familiar.  And, yet, it's one of those funny things where time never really stops and life keeps rolling along.  So, we were "suspended" but still living.  I've got some precious memories from this last year, ones that I will treasure in the quiet places of my heart.  Honestly, I've also got some memories I'd like to forget but will be better and stronger for remembering them instead.  For today, I'm thankful for our hiatus.  And, I believe, that with time I will be even more grateful for the "interruption" graciously given by our heavenly Father--in  order that He work all things together for our good, for those who love God and those who are called according to His purpose.

Fighting Fear

Can you tell that I've been at the hospital with some time on my hands?  More new posts!

Yesterday, at the end of the day, with the surgery behind us, when all was quiet (except for the hospital beeps), I found myself fighting fear once again.  Fear is one of those funny things that can sneak up on you.  Before you know it, it's waging war against you.

Fear of starting all over with this new shunt.  Fear of more incisions to watch for leaking.  Fear that this shunt will stop working or get infected.  Fear that now Jonathan has five "healing" wounds on his body, which translates to five locations for infection to seep in.  Fear that we will be sitting in this hospital again way too quickly.  My list could go on...

I've known different kinds of fear in my life.  There's the fear that I've had since I was a kid--the one of bad weather, particularly related to the wind!  This fear has revisited me lately, especially with all the crazy weather sweeping across the States.  There's also the fear of a controlling and evil government system, with eyes and ears everywhere.  Yes, we've lived in it and that fear is pervasive.  I do have a fear that likes to come back to visit every once in a while, usually about my husband or our children.  A fear that something will happen to them.  One of the deepest fears, almost suffocating, that I've ever experienced came in the nights the first couple of weeks after we found out about Jonathan's diagnosis.  I imagine anyone standing on the precipice of a major life change struggles with this fear.

I've found the very best thing I can do to fight fear is start reading the Word and/or listening to music that leads to worship.  By reading the Word, I am filling myself with His truth and drawing close to Him.  I have a deep love of music that takes my focus off me and this world and draws my eyes heavenward.  These two things, especially together, drive away my fears quickly.  Sometimes I know His peace and then turn right around and start replaying those fears in my mind.  I have to pick up the Word again and fight to rest in Him.  And, yes, on some nights you'll find me sleeping with the light on--symbolically driving back the darkness!

This morning I was reading in the Word and listening to music and these particular words ministered to my heart:

I have told you all this so that you may have peace in Me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world.  John 16:33

When the storms of life come, the wicked are whiled away, but the godly have a lasting foundation.  Provers 10:25

Let all that I am praise the Lord; with my whole heart, I will praise his holy name.  Let all that I am praise the Lord; may I never forget the good things he does for me.  He forgives all my sins and heals all my diseases.  He redeems me from death and crowns me with love and tender mercies.  He fills my life with good things.  My youth is renewed like the eagle's!  Psalm 103:1-4

I heard a loud shout from the throne, saying, "Look, God's home is now among his people!  He will live with them, and they will be his people. God himself will be with them.  He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain.  All these things are gone forever... No longer will there be a curse upon anything.  For the throne of God and of the Lamb will be there, and his servants will worship him.  And they will see his face, and his name will be written on their foreheads.  And there will be no night there--no need for lamps or sun--for the Lord God will shine on them.  And they will reign forever and ever.  Revelation 21:3-4, 22:3-4

Light Shining Out of Darkness

God moves in a mysterious way

His wonders to perform;

He plants his footsteps in the sea,

And rides upon the storm.

Deep in unfathomable mines

Of never-failing skill,

He treasures up his bright designs,

And works his sovereign will.

Ye fearful saints, fresh courage take,

The clouds ye so much dread 

Are big with mercy, and shall break

In blessings on your head.

Judge not the Lord by feeble sense,

But trust him for his grace;

Behind a frowning providence

He hides a smiling face.

His purposes will ripen fast,

Unfolding every hour;

The bud may have a bitter taste,

But sweet will be the flower.

Blind unbelief is sure to err,

And scan his work in vain;

God is his own interpreter,

And he will make it plain.  

--written by William Cowper

A Little More Info...

This is for those who'd like a little more info on the last two weeks in the hospital!  Jonathan started showing some of the classic signs of a shunt malfunction or infection.  A malfunction would have been much easier, as it's into surgery and out of the hospital the next day.  The infection means that we have to knock out the infection and then wait for so many days of antibiotics and "clean" labs before the surgeon can replace the old shunt.  This is a matter of pure logic--so that the new shunt will not get infected also!

When there is an infection in the shunt, the bottom part (that drains into the abdomen) is pulled out of Jonathan's body and drains into a bag beside his bed.  This is great because it drains a lot of the infection out as well, rather than letting it circulate in his body.  However, lots of the good things that Jonathan needs for health also drain right out of his body.  Plus, you add the powerful antibiotics into his system and Jonathan was just thrown for a loop.  He was fighting infection, in his cerebreal spinal fluid, nauseas from all the medicines, anemic and weak.  Poor baby!

All of the tests were to make sure there was nothing else going on in his body, because the presentation of his shunt infection was very atypical.  I don't like the word atypical.  I don't like head scratching and puzzling over test results.  And I don't like the doctor telling me that he has no idea why the shunt got infected so late in the game.  But, all of these things are out of my control!!

Two days off the antibiotics and our Jonathan is a different baby.  He's smiling and talking and eating and begging to be held.  It's so good to see.  So, tomorrow the new shunt goes in.  We will watch to see how his body responds.  I do hope that his body takes to the shunt quickly and accepts it.  And our "six month clock" starts all over again.  We pray he stays infection free.  Two weeks are critical; two months are critical; six months are great!!  We shall see...