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...

Grieving Again

Friday was a very difficult day for me.  One of those days where if anyone shows kindness by asking if you are ok, you burst into tears before you have time to respond!  It all started with the prospect of putting in the NG tube for Jonathan so he can get some nourishment, since he hasn't tolerated much nursing at all.  In my mind, this was a big step backward and the idea rattled me.

As the day progressed and his tube went in, I realized that my tears were from a much deeper place than just our son's trouble with eating.  Since he's been out of NICU, we've had such a great time at home with Jonathan.  He's been healthy, except for a couple of colds.  He started therapy and really started using his arms.  And one area where he really excelled was eating.  He fell into a good routine, nursed with very little spitting up, and grew into quite a little chunk!  

Being at the hospital again, seeing all the pain he's been through, watching them poke him and wheel him off to radiology, CT scans, ultrasounds, the operating room.  Even the doctors scratching their heads a few times during the week, puzzled over his numbers.  And then they tell me that it would be best to get a tube in him to see if we can get some food to stay in his system.  All these things, plus being separated as a family, were a vivid reminder that Jonathan is not a typical baby.  Yes, he is a beautiful baby.  He does things that other babies do, in part.  He is our son, proudly.  He is Jonathan, born with Spina Bifida and Hydrocephalus. 

Waves of grief washed over me again on Friday.  It was good when I realized it about half way through the day.  I was crying tears of grief for the things that our son wouldn't do.  Tears of grief for the countless procedures that he will endure.  Tears of grief for the way that our family has changed.  Tears of grief for the life that was and the life that is. 

Tonight I am sitting beside a very happy baby boy once again.  He is a fighter.  He is ready for that new shunt.  He is mad at this hospital bed and longing for his at home.  He wants to hear his brother and sister running up and down the hall, so he can plan ways to keep up.  He is nursing some again.  He is ready to grow and learn and explore. 

I have a feeling that this little guy is going to teach all of us much more than we can imagine!

Happy Birthday!

Today we celebrate six months of Jonathan's life.  Happy Birthday, buddy!!
Oh God, we pray for Jonathan David this day.  We know with absolute certainty that You are the Author of all life.  You created Jonathan in the womb and formed him.  You have known him long before we ever gave thought to a fourth child.  And we also know that You purposed him for our family.  What a joy, privilege, honor!
As he spends this day resting and healing in the hospital, I pray that You will strengthen his body.  I also pray that You will meet the deepest needs of his heart right now.  Will You fight against all infection with Your mighty outstretched arm?  Restore him to health.  May our days in the hospital be few in future days.
Father, my greatest prayer for our son is that You will be glorified through His life.  Use Him.  May He know You and point others to You in a way that only Jonathan can do.
He is a treasure given by Your hand.  And we know that Your estimation of treasure is far different than this worlds and some of the greatest ones come in unexpected ways.

Links

I am no computer tech!  This is as complex I may ever get with our blog.  I'd like to share a couple of links--one of a song by Steven Curtis Chapman titled "Long Way Home."  I just love this song from the lyrics to the music.  I often sing it loudly while driving down the road (as my kids stare at me like I'm crazy!).  Maybe some of you will enjoy it too.
http://www.myspace.com/stevencurtischapman/music/songs/long-way-home-82736522

The other link is to a story written by another blogging mom of a daughter with Spina Bifida.  Very beautiful and thoughts I often have for our Jonathan.
http://spinabifidakids.blogspot.com/search?updated-min=2011-01-01T00:00:00-08:00&updated-max=2012-01-01T00:00:00-08:00&max-results=50

Details

Wow!  I know that the L'd does not give us more than we can handle.  I know this in my head.  Some days, in spite of this knowledge, everything seems to be a heavier load than I have the strength to carry.  What have I learned in the last year, especially the last six months?  God is in control!  Any semblance of control that I thought I had was just not true.  He works and orchestrates things.  He gives and He takes.  Though life experiences work against this knowledge of His loving control right now, I rejoice rather than lash out at Him in anger.  Yes, it's hard.  Yes, it can drive you mad because you WANT to do something--anything.  But I also know that He is good.  I have known Him and experienced His goodness.  I read His Word and cling to the truths of His goodness.  I also know that He has a perfect plan.  It's far greater than anything I could imagine for myself or my family.  His Word shows me how incredible it is to trust His sovereignty.

So, all the things that are beyond my control right now (from watching a sick child, to waiting for our next place in His work, to having our family routine turned on end, to worrying with my parents over Dad's health, to bad weather sweeping across the nation, to how will this impact our children, to...the list goes on) give me opportunity to wait in Him, rest in Him, cling to Him, glory in Him whether it's in laughing or in crying or in pacing or in striving!

I know that my load is not any different or any less bearable than others.  There are, in fact, some who will read this and resonate with the helplessness.  We had a friend tell us that they are no longer living "day to day" trusting in God, but more "moment to moment."  I guess that's the place that He is taking us.

Living with Jonathan is a trusting in Him that I have never known.  When he's fussy on Friday, it's my love as a mom to watch him more closely and look for other signs too.  And yet trust.  When he's incredibly restless through the night, I can't help but toss and turn with him and wonder what's going on.  And yet trust.  When I pick him up Saturday morning and he throws up and won't keep anything else down, my mind starts racing and hoping it's only a stomach bug.  As I watch his delicate head fill with more and more fluid, the mom in me screams for someone to tell me what to do and make the decision easy.  And yet trust.  When we decide a trip to the ER is well worth the effort, I still wonder if it's the right thing to do and nerves eat at me as we wait for the results from the CT scan and lab work.  And yet trust.  When the doctor says the lab work shows an infection but the shunt is still working properly, my heart leaps with joy.  And yet trusts.  When the phone rings not even an hour later to say that there is more going on than first showed up and we need to get back to the hospital, my insides jump into turmoil.  And yet trust.  When we find out that we are looking at a shunt infection and weeks in the hospital, I wonder how we will ever manage and come out the other side of this whole and healthy.  And yet trust.  When our baby boy is crying in pain and discomfort and there's nothing I can do, I simply cry with him.  And yet trust.

Why?  Because I have tasted and seen that the L'd is good!  He holds Jonathan in His hands.  Jonathan belongs to God, created by Him.  God has given Jonathan a strength and peace that transcends human understanding.  Jonathan was God's plan for our family.  God wanted him for my life, Jeremy's life, Noah's, Grace's, Ruth's, grandparents, uncles and aunts, countless others impacted by his life.

And there are reasons to rejoice in His goodness and plan...
*The medical system of America fights for children like Jonathan and has the ability to do so.
*We are not sitting in an unknown hospital in FL, as God moved our hearts and circumstances to cancel that trip this month.
*We are learning to totally depend on Him in a new way.
*Our older children are learning a very real and tangible faith that can be taught no other way.
*We get to see Him answer prayers in amazing ways.
*We get to experience the Body in a very humbling and encouraging way.
*And one I think on often, how much more rejoicing the day that our Jonathan walks completely well and whole into the arms of his Creator.

God is good and all He does is good, even when it looks to be just the opposite.

Pray...

We are sitting at the hospital tonight with Jonanthan! No computer to send out an email update. So, if you get this can you please pray for Jonathan? We are hoping it's just a stomach bug, but his head is much more "full" right now and he was throwing up this morning. Spent the afternoon in the ER. Had tests run. Our doctor checked the shunt function, which seems good right now. There are trace amounts of bacteria from fluid drawn from his shunt. They are starting preventative antibiotics tonight. Please pray that all the cultures come back infection free. Please pray that Jonathan will be back to himself soon. Please pray that the shunt will continue to help his head. Please pray for wisdom for everyone helping him. Please pray for peace in our hearts! Thank you.

Pictures

Riding in style...

First real bath!

My brother loves me.

 

What's not to love about that face?  Such a delight!!

The Lull

One of the nurses, who has worked with children with Spina Bifida for the last 20 years, told us that many families experience a first year with their baby that brings a false sense of "normalcy."  A baby is a baby!  You take care of them and watch them grow and learn from the world around them.  Then, as the milestones approach the stage of moving and walking there is a reminder, once again, that my child does have Spina Bifida and his life will be different from the typical child.  Then begins more intense therapy, leg braces, and fun equipment for mobility, and the diapers continue past "typical" and the list goes on. 

I'm finding that there really is a "lull" for our family right now as we interact with Jonathan.  He is such a sweet little baby.  He smiles at all of us and talks to us and loves when he is the center of attention.  Yes, he has more doctor's appointments than any of our other children combined!  Yes, he has a special set of therapists that make weekly visits to our house to help him stretch and sit and grow confident with the head God has given him.  Yes, we have to make adjustments in how he lays or sits to accommodate the size of his head and the position of his shoulders.  Yes, we are pretty home bound with him right now to keep the level of germs down the first six months of his life.

But despite these things, Jonathan is a baby.  He's eating and growing and changing.  We play with him and change him and love him.  He brings joy to all of us.  Our other children are constantly commenting on how cute he is.  Noah even likes his "funny" big head and little face.  They want to kiss him a hundred times a day!

I'm thankful for this time.  I know we will have another wave of grief with the passing of time, but we are rejoicing in who God has created Jonathan to be, in all the little milestones, in the strength and health that God has given him. 

Jonathan's had a few sessions with a physical therapist.  With the stretching and some creative positioning, he's been using his arms more and reaching out and up for things.  It's so fun to watch him discover his hands and arms and touch the toys.  The first day he realized he could reach, he kept throwing his arms into the air and touching the toys in front of him--with a sense of wonder.  May he never lose his wonder at the things he is able to do!  May he always strive and reach for what God has planned for him!

BTW, I have many a "post" that runs through my mind daily.  But the end of the day finds me rather exhausted and the last thing I think to do at night is sit and write that post I fine-tuned in my head!  Plus, I really struggle with the idea that people want to read and keep up with our family through a blog or hear what I have to muse about!  Thank you for reminding me that you care very much and want to know what has happened along this journey.  It's a good reminder that we are not in this alone!!

"Good"

There are many moments in the day when I look at Jonathan and wonder what the Lord is doing.  He is a visible reminder that times have changed for our family.  We are still waiting on the next step--living in a borrowed house, driving a borrowed car. 

And then there are just as many moments in the day when I wonder what the Lord has in store for Jonathan.  I am constantly asking Jeremy if he thinks Jonathan will be ok.  He just smiles and says, "Jonathan will be who God wants him to be.  Enjoy him for today!"  It's so very hard not to worry.  Tonight he has a bad cold, one that worked its way through our house.  I worry because he's a baby not yet four months old.  I worry because he's got Spina Bifida.  I worry because I don't really know what else to do when the prayers have been said. 

But that little guy is strong.  He's so sweet.  When we hold him, he looks up at us and says in his little voice something that sounds very much like, "Good."  It's like his way of reassuring us that he's ok and he will fight and everything will be fine.  It's the funniest thing.  He's got a cold, his eyes are red and watery, he's coughing, and yet he looks up at me and smiles this big smile and says, "Good."  Thank you, God, for the small ways you remind me that You are good and all You do is good.