You Are So Limited

2 Days Ago

Thank you all for your prayers and concern for Nathan.  He has continued to slowly and steadily improve since his admission to the ICU on Sunday night.  As of this morning (Thursday) he is still receiving a small amount of oxygen support but that has decreased drastically the past 24 hours and we are hopeful he might be completely off of any additional oxygen at some point in the next 12-24 hours.  He is much improved over all.  At this point besides weaning him from the oxygen, the goal is really to see his digestive track calm down and stabilize.  he always has a hard time adjusting to a change in diet but we need to make sure he can eat, keep and move his food along as we start to think about the possibility of bringing him home at the end of the week.  (Yikes!  I just said it out loud!)

2 Weeks Ago

*This little guy loves his dad!*


A social media group I was in posed the following question earlier this month:  If you could write a letter to the disability effecting you or your family, what would you say?" 

My response is below...




Dear Apert Syndrome,

You are so limited.

You made your grand entry into our lives, uninvited and unannounced.  You showed up in one of the most intimate and exciting moments parents experience seeking to steal from us.  And you did.  You stole our breathe.  But you did NOT steal our love.  You are so limited.

In the NICU you flexed your great muscles trying to show us just how big and strong you really were.  With each new medical term, new specialist and new insurance question you sought to overwhelm and overpower us.  And you did.  For a moment.  But it didn't take long for us to realize that all this new information was just that - new information.  And so we read and we studied and we had countless meetings, made infinite phone calls and sent dozens of emails.  And we became knowledgeable.  And we were equipped.  And we made a plan.  Did you really think you could hold us down?  You are so limited.

You thought the internet would be your ally.  You thought that if you could bombard us with pictures of things we had never been exposed to we might crumble.  What you didn't expect was for us to see BEYOND the pictures to the stories.  Stories of people being loved and loving, stories of strength.  The very tool you hoped would cut us down has provided us support groups and a whole new world of connectivity and help.  You are so limited.

And then you really got nasty.  You called in all your buddies and tried to bully us.  Month after month you showed us just how many friends you had, how many areas of our son's body you an your mob could attack and how nuanced and random you could chose to be.  Respiratory, vision, hernia, the weirdest pylorus known to man, mal-rotated small intestines... to name a few.  You and your buddies kept us and our son in the hospital for months, much of that time separated from his sister.  What you didn't expect was for us to have MORE friends.  And better friends.  And an incredible family.  They cleaned our house, cooked our meals, sent money to help, took care of and cherished our daughter, took day and night shifts at the hospital to provide relief.  They checked our mail, did our lawn and they prayed for us.  They prayed hard.  You and your gang thought you were big and bad but our posy turned out to be stronger.  You are so limited.

You planned to isolate us, didn't you?  At the very least you must have thought you could separate our boy, single him out.  And while he may stand out, he is far from alone.  Did you know his big sister, just 16 months older doesn't even realize this is not "normal?"  When she plays with her baby dolls, sometimes they throw up and she asks for a napkin and wipes them up and then wipes the floor.  And when I am listening to her brother's lungs through the stethoscope that I have become quite proficient with she lines up for me to listen to her - she doesn't think it's strange, she just thinks that something that good moms do for their kids.  And the two of them giggle and they hug, and they can't wait to see each other in the morning.  As for friends - he has lots of those too.  Kids and adults of all ages, shapes and sizes.  And though you may have hoped to shrink his world what you have actually done is expand other’s worlds.  You are so limited.

Please don't think I am treating you flippantly.  You have your territory.  You automatically come with surgeries, therapies and in many cases traches, adaptive technologies, delays, etc.  You have brought name calling to others and I'm sure you will bring teasing and taunting to my precious son.  You do change how our family's time is spent and you do touch every relationship any of us is in.  You keep us in places we want to leave and keep us from places we want to go.  There are things that my son hasn't done yet that many of my friend's younger children do easily.  There may be some things that he or I never experience.  You are without a doubt a force to be reckoned with and I respect that.  You have caused us to rewrite our standards, to change our expectations and learn to navigate within new boundaries.  But rewrite, change and learn we have.  You have won a few days here and there but love has, is and will win the war.  You will effected my son every day for his entire life, but make no mistake - it is YOU who are so limited.