Thursday, December 24, 2015

Those reminders

Today, I was reminded that my life is not "typical."

I was running those last minute errands (like...oh man we are out of milk and today is Christmas EVE!!!!) and I was stopped in the produce aisle by a sweet woman who attends church with us.  She told me how much she enjoys baby bird and how strong we are, as her parents.  I expressed my joy at all my birds as well, thanked her, and wished her a Merry Christmas.

I started thinking, you know, why do people think I am so strong?  I am not doing anything that every other parent does.  We all want what is best.  We all try our hardest to teach our children those important life lessons.  We all try to make sure they are wearing matching clothes (some big battles, let me tell you.)

I was telling a friend of mine this exact thing, waxing on a bit poetically (sometimes I feel I am allowed a little more waxing license than is probably permitted) and she said...oh but I could never do what you do, everyday.

I asked her what she meant and she looked at me like a grew a second head (and most likely a second head with some sort of medieval bent to it) and stick a tube in your kid's stomach twice a day at least!!!  I could never do that.  Then she made a gagging face.

While this gave me some time to rethink our friendship, it also gave me pause.  Hey, you know what?  Most people DON'T do that!  But I do.  I am so glad I do.  And I vowed to be more present in the mechanical motions of my day and take note.  Here is what I learned.

I am so grateful for the little port in baby bird's tummy.  Every morning and every night, we open that port and attach a tube.  Through that tube we can administer medication that will help prevent the seizure monster from stealing more from her.  We also administer all the daily fruit and veggie requirements (thanks, by the way, JuicePlus+) that will help keep her healthy and strong.  Into that tube, connected to her port, we can give cough medicine and pain medicine and even supplement her food so baby bird can gain weight and strength.  That little port gives life.  Not everyone has a tubie, that's for sure.  But baby bird does, and I am so grateful for that tiny little tubie that helps keep my baby bird alive.

I am so grateful for the medicine we have to administer.  That medicine has helped keep some of the seizures away from her.  Those nasty seizures that have stolen words and the ability to walk.  The medicine keeps those mostly away.  I remember before that medicine when skills would disappear.  I remember all the times we have stopped that medicine and I watched her lose words and the ability to walk until she sat, eyes unfocused, drooling, alone in the world because she didn't know who we were or that we were there.  I am so thankful for the medication that keeps my bird bird.

I am so grateful for her hard work to use words to express her emotions.  We sure still have days that involve melt-downs and beak-downs and often times these are horrible and scary and they are always hard.  But, she does have words now.  So many don't.  They can't express what makes them frustrated or hurt so for each "I HATE YOU" and each "I QUIT EVERYTHING" I am grateful.  She is communicating. she experiences frustration.  Those things mean she isn't locked in her own world.  She is in mine too.  She is a part of the world around her.  We were told that might never be the case.

I am so grateful for her need for structure and routine.  I never knew it was something I craved until it became a necessary part of our lives.  How much easier is life when all your green shirts are kept together?  How much easier is life when only one kind of pant will be worn?  How much easier is life when everyday, at exactly the same time, the same thing happens?  Sure, spontaneity is a thing of the past, and everyday that something different will happen has to be prepped for....but seriously....sometimes that routine is so calming

I am so grateful for the nights with no accidents.  After 6 1/2 years, baby bird is potty trained at night.  We had resigned ourselves to that never happening.  Leave it to baby bird to prove everyone wrong again.  I am grateful for the nights that accidents happen.  Those nights mean her bladder is working.  They mean she had an accident...not an on-purpose.  All things to be grateful for.

I am so grateful for all the atypical aspects of my life....for the tubies and medicines and equipment and specialists and teachers and therapists and PCAs and neighbors and friends who help keep our atypical life.well....typical for us.  I am grateful for the other birds and their flexibility and their caring and their patience and their joy in the small things. It keeps us sane.

I am so grateful that I have been blessed by the ability to see the blessings in things, big and small.  And I am so grateful for the people who remind me of the strength of every single person....we are all stronger and more capable than we know.