For Caleb

Dear Caleb,

You were born into our family early on a record breaking warm November day in Minnesota.  Your tiny body was perfect in every way and we were all so excited to welcome you!

I remember the first day you got sick, at just over 2 months old.  We spent the day at the Children's Museum with Leigh, Nathan, & Ashleigh and during the day you started coughing so hard you were throwing up.   We stopped by grandma's house on the way home and your breathing became fast and strange.  After several hours in the emergency room you had your first case of "bronchiolitis" and we were met at home by the medical supply company with your first nebulizer.

Four months later you were still sick.  Your ears had been constantly infected, we knew about your dairy allergy, but you were still sick.  When you started eating solid foods, things only got worse for you.  Your weight started dropping and by your first birthday you had an entire team of doctors working to figure out what exactly was causing all of this trouble!  After many tests, many wrong turns, many emergency room visits for asthma, and more than one hospitalization for your doctor's to finally admit that they didn't know.

During all of this you continued to develop as a little boy.  You had an intense personality and were very particular, but we all assumed it was just a part of being a little boy who had gotten off to a rough start in the world.  As your second birthday came and went, we still had no answers for you.  Finally, a new small town doctor thought to test for this thing called Celiac Disease.  When the blood test came back positive, we felt confident we were moving in the right direction!  The new diet caused almost instant changes in your health.  Within two short years you were no longer using any asthma medications on a daily basis.  You had more energy and you started to grow again.

You were so bright... everyone always commented on it!  You would recite the continents and oceans (and find them on a map) before your third birthday and practically taught yourself to read just by looking at books.  You were also quiet and the same thing would occupy your attention for hours.  The same book could easily be read 10 or 15 times in a row, or more.  You were Caleb.  An intelligent, quiet, and focused little boy.

As time went on, however, these same things that everyone had always been so impressed by turned darker.  A preference for a certain pair of pajamas became a long drawn out crying fest when they weren't clean.  You became quite particular about the rules, creating a long list of rules for every situation.  The consequences to all of us were harsh if things didn't follow your rules.  Your speech regressed and we were often asked to interpret your words for even close friends.  You became increasingly anxious and worried.  Anything in your hands became a tool for expressing your anxiety, including your hands themselves if nothing else was available.  Instead of just being shy, you became withdrawn and would not look at strangers or speak at all in uncomfortable situations.

After many months of going back and forth between therapists, doctors, and others you were diagnosed with Aspergers Syndrome in January of 2012.  This diagnosis brought both relief and fear to your parent's hearts.

You are still Caleb.  You are still intelligent, quiet, and focused when you are in comfortable situations, well rested, and not anxious about circumstances you cannot control.  We are learning to understand your cues that show us you need a break to regroup yourself.  We are learning to give you specific goals and tasks for social situations.  We are learning to let you speak for yourself even (maybe especially) when it is hard.  We are (slowly) learning when to push and when to pull back.  We are learning to look at your struggles as opportunities.

We have had amazing support from your Tae Kwon Do instructors, even those who are unaware of your struggles have helped us create an environment where you feel safe and capable.  Even before your diagnosis, these people have helped you grow and thrive under their loving structure and high expectations.  Your primary doctor has helped us navigate a system of resources and referrals, always encouraging us not to take no for an answer.  Many days still feel lonely as we navigate the many options and approaches, while being limited by our choice to homeschool or by things like insurance coverage or finances.  The days when those problems are at the forefront can seem long.

We have great hope, however, that we can continue to move forward on the path that God has set forth for you and for us.  We pray for the knowledge to make the right set of choices for therapies, schooling, and activities.  I told myself for many years that you would "outgrow" this or that behavior or it was "just a phase".  I am learning to let go of those expectations and embrace and enjoy where you are today.  It is not always easy, but it is always productive to think of the calm, focused, and intelligent Caleb that we know you have always been!  You just need a little help filtering out and responding to all of the things that pull you away from us some days.

Your eyes have given all of us a new perspective and we love you all the more for it.

3 comments :

Meredith said...

In tears over here. Love you guys...

Lisa said...

He's lucky to have you for a mom Heidi!!

Home School Mom: Denise said...

Our special children are beautiful in their own unique ways - we are blessed to have them - and your little man is blessed to have you!