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.