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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.