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. 

Happy Three Months

Several people have asked how things are going, since it's been a little while since we sent an update or wrote a blog!  Things are going well and we've been busy, with Jonathan at home, three excited siblings running around, and the Holidays.  Every day I'm thankful for the little bundle of joy we call Jonathan, Jonathan David, or Johnnie (as Ruth likes to say!).  He is a blessing to all of us and has won us over completely.  He's a good baby, sleeps well, loves to eat, and continues to heal.  His back looks amazing.  We go to see the neurosurgeon again tomorrow and I'm excited to see what he says.  We have him up more and he loves being a part of everything going on in the house.

He's hitting most of his milestones for his age, cooing and smiling some.  He's a little behind in using his arms, mostly due to the lack of use and tightening of muscles because he spent so much time solely on his belly.  But we are exercising them and hoping to help him along.

We've made it past the critical age of two months and are looking forward to the day that we clear six months, which is another huge marker for Jonathan.  We continue to pray hard against infection and are pretty much home bound with him right now.  We rotate trips out to the store and even to church.  Jonathan is at home, except to go to doctor appointments!  But, that's ok because we have a lot to do around the house with school.

We are very thankful for all that God has done for our family.  We are still waiting to hear about our next steps.  Sometimes the days get long and doubts come along, but we are fighting hard to hold onto our faith.  We have crossed quite a few things OFF our list, which is also an answer for direction!

So, we wait!  Meanwhile........Happy three months, Jonathan!!!

 

Maddening

When there is absolutely nothing you can do to change any particular situation, it can be maddening.  In Jonathan's case, it's a practice in trusting God.  In the womb we knew Jonathan was forming with a hole in his back and fluid on his brain, but there was nothing we could do.  He was born, went into surgery, and spent the first six weeks of his life at the hospital and there was nothing we could do.  We watch the back heal and the shunt start to do its work and there is nothing we can do.  We watch him lay there with little movement from the waist down, except some reactions from nerves, and there is nothing we can do.  We wonder what his mind will be like and how it will form as he develops and there is still nothing we can do.  We worry over infection and watch for fever and there's nothing we can do.  He has a little cold and cough and there's nothing we can do but watch it run its course.  Tonight, Jonathan is running a fever from his two month immunizations and, honestly, I am a nervous wreck.  In Jonathan's little life, fever equals a very bad thing.  I keep telling myself that this is normal since he got his immunizations today, but there is a part of me that keeps worrying and wondering if it isn't something more.  Maddening.  And a lesson in faith and trust that I should have already learned, but...  I guess I'll be learning this one for the rest of my life!  I recently asked Jeremy if there would ever be a day that we didn't "worry" over Jonathan.  The answer...NO.  May God give me the strength to do this well.  To trust Him.  To walk with Him daily.  To rejoice in the little miracles along the way.  To turn to Him on the days of doubt.  To hope for our home to come.

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