Oh to have a preemie.  A little teeny baby who was born at 26 weeks, weighing in at less than 2 lbs.   A baby who had a stroke and now still shows some small signs of cerebral palsy.  I expected it would be hard the first year or so of his life.  I knew he would be delayed and would need extra time to learn and thrive and grow.  I knew we had to watch carefully for illnesses like RSV.  I knew he would probably develop at his own pace.  But, somewhere in my mind, I figured that once we got him through those first few scary months then he would be fine.  That he would catch up and be just like the other kids.

I didn’t know how big of a deal the little things would be.  Would he learn to walk?  Could he ever run?  Would he ever learn how to talk and communicate with us?  Would he be able to hold a pencil and write someday?  Would he be able to read a book or do a math problem?  Each of those steps was a huge milestone in his life and we celebrated over each thing.

A few days ago, we had the latest IEP meeting and discussed the plan for 6th grade.  As we read the IEP and met with this incredible team who really cares for our son, we were filled with mixed emotions.  Joy that he is 5th grade and doing a lot of things.  Awe that God has blessed all of us with such an incredible group of people for him to work with each day.  And then, there is this nagging feeling, one that’s a little harder to put into words.  I guess it’s the realization that my expectation of how things were going to go, is not our reality. I had talked to other preemie moms and their kids essentially grew out of any preemie conditions or problems and have gone to lead normal lives.  This what how I just assumed things would go.

As Nathan gets older, it is more and more clear that he is different, that there are still a great deal of struggles ahead and that in so many areas, he is not a typical kid.  It’s wonderful…and it’s exhausting.  You get to the point where you begin to talk more about life skills learning versus learning what all the other kids are learning.

Then I remember to breathe.  To take a step back.  To take one day at a time.  To take each moment as it comes.  Celebrate his successes.  Celebrate the wonderful kid he is.  Enjoy his incredibly sweet and tender heart.  And to be thankful.  Thankful for how far he has come.  Thankful for the incredible people who love our son so well!  He has had teachers who really like him and see the best potential in him.  He has an aide who is like his school grandma.  He has had speech and occupational therapists who have helped him so much.  He has grandparents who are involved in his day to day life.  He is one blessed little boy.

So another reminder to relax and breathe and trust that wherever his future takes him is just where he should be.