Sunday, August 30, 2015

A long long time ago

A long long time ago, in the distant past, I was a college student.  Anyone else remember a million years ago to when you went to college?
Last night, I was laying in bed, wrecked with anxiety remembering college.
Don't get me wrong, there were lots of wonderful times in college and I made some of my best friends there, but, overall, it was not necessarily a "good" time in my life.

I remember spending nights crying, hyperventilating, while having horrible memory flashbacks.  I remember drinking for the 1st time and never knowing how NOT to drink to excess.  I tried drugs for the 1st time in college and it would take those 4 years plus one more to stop.  At my worst, I was getting high several times a day and doing whatever drugs I could find.

I didn't care.
I wanted to not feel
to feel normal

My whole life, I suffered from depression.  I suffer from depression.  It hasn't gone away.  I just take medication and spent years in therapy learning how to cope.  Learning how to breathe through those nights like last night.

Nothing triggered me last night.
I simply went to bed.
And they came...unasked...and I couldn't stop them.  I had to breathe through them.  All the horrible things that happened to me and all the horrible things I did.


and remember that I am not my past.  I am not my past choices.
I am today
I am tomorrow
yesterday brought me here
it did its job
but I am not defined by it

When you are suffering from depression, things that might not make sense to anyone else make perfect sense to you.  Those very things that make complete sense to you make no sense to people not suffering from depression.  They say they are egotistical thoughts or selfish behaviors or dumb or crazy.  None of that makes those things NOT make sense to you...they just make you feel more and more alone.

I hurt a lot of people.
my family

but mostly
I hurt me.

I was just a girl...
so lost
so alone in a crowd

I am so much older now...and wiser...and calmer...and medicated :)
I have been clean for 20 years.  Almost half my life and still...
I have night like last night where it hurts to breathe and I feel myself getting sucked down
drowning in anxiety and depression

The difference is, I have tools now.  I can remember to take deep tell myself to relax with each exhale.  I can not stop those waves but I can surf through them.

I did not drown

We can't not change the waves but we can learn to surf.
~ Jon Kabat Zinn

Friday, August 14, 2015


In T minus 6 days, my OB (original bird) will be flying the nest!  Somehow, he is old enough to leave for college.  I certainly do not remember giving him permission to reach this age and this level of independence!!!

I have prepared him for the definite possibility that I may cry (who are we really kidding here?  Everyone knows I will be a leaking mess) and that he has to let me fuss around him for a bit and he can't shoo me out the door.

And...that I will expect phone calls

And...that I will be visiting

And...that they might be surprise visits because maybe I have really important errands to run in that area.

How do you ever prepare for letting go?

I should probably just remember all his jerky teenage times

Saturday, August 8, 2015

Being a mom of a special kind of bird, I have been privileged to see the best kinds of people and the worst kinds of people.  Who knew there was such diversity, even in the tiniest of towns?  When my girl was first born and we were finding all kinds of new and interesting things out about her, people felt encouraged to say whatever came to their minds.

"Oh she has seizures," said with a shaking head and downward glance. "My dog had seizures too and we decided to just put him down."
"Well, you know you aren't married and God really wants people to be married before they have kids.  Maybe this is just a little reminder for you."
"Did you know this was going to happen to her...I wouldn't have kept being pregnant if you knew, right?"

The same way that people feel the need to tell their birth stories, all pain and horror, to every pregnant woman while rubbing her belly...that is the same way people approach parents of kids with special needs.  That is, if they approach them at all.  There really doesn't seem to be a middle ground.

And, even though I have gotten to see these negative aspects, I have also been fortunate enough to see the amazing bits too.  There was the woman who smiled and made faces when Finn was screaming sounds during judgment from her...just smiles at a girl who found her voice.  Families who, year after year, come together to walk for epilepsy awareness...they volunteer and spend days setting up so that our girl can be a "shining star." There is the fabulous woman in the grocery store who listens to the same story, day after day, and still shows enthusiasm in all the right spots and listens intently (even though I am sure she could recite the story word for word by now.)

And, in a world full of specialists and appointments and scans and blood draws, we have been so blessed with an amazing doctor.  Out in our neck of the woods, doctors aren't exactly a dime a dozen.  The nearest city of any size is 90 miles away and to see Finn's neurologist, we travel five hours, one way.  One of our favorite people is Finn's general doctor.  She practices in the next town over and we see her an average of twice a month...sometimes more, never less.  She is fantastic.  She has been Finn's doctor since our girl was born and is, in all honesty, one of the main reasons we have never moved.  She is available 24/7 and spends as much time answering our questions as we need.  She is honest and funny and caring and a real member of our family.  She has always told us that Finn will write her own song and never limit her based on what her specialists say.  She emails or calls if she hasn't seen us in awhile and sees Finn as a whole person, not a diagnosis.  The best.

Finn has been in swimming lessons for two years.  Two years to pass a level and start a new one.  During all those lessons, her swimming instructor (a teenage boy) has encouraged her and shared in all her triumphs.  He showed calm patience and understanding when the seizures stole her ability to swim.  He held her in the water...sometimes her whole class period.  He never stopped believing she could do it.  So she never stopped.  This year, when she finally started talking more (more being an understatement) he never told her to be quiet or ignored her.  He gave her his full attention and he engaged her, smiled at her, answered questions, listened to the same stories (over and over and over again.)  He taught her to swim.  He noticed when she wasn't at the pool with her PCA and even texted her to make sure everything was OK.  When she passed from a turtle to a shark, I don't think that even I was more proud of her than he was.  Even though he wasn't teaching the shark lessons, he still checked in with her (and even noticed when she lost a tooth.)

Good PCAs are hard to come by.  We have had good PCAs and we have had bad PCAs.  This summer, Finn had a PCA that was a perfect match for her.  She spent hours and hours at the pool with Finn, practicing her lesson skills and encouraging that love of water.  She pushed Finn, just past her comfort level...encouraging her to grow and push herself.  She never let Finn give up on herself.  She was firm and fun and fantastic.  We will miss her so much when she goes back to college.

There are many days when, as parents, we are tired.  We are tired of the fight, the battles to have our children seen as special but not because they have disabilities but just because they are every child.  We encounter hurdle after hurdle, comment after comment, and look after look that tells us we will never be "normal."  We are different no matter how much we dress it up.  No matter what cool clothes or what trendy device or where we vacation or what snacks we bring on snack day, we don't fit.  But...some days...we are blessed with the amazing doctor who sees a child and not the diagnosis.  We are met with the acceptance of instructors who embrace our child's uniqueness and don't see the burden but instead they see the gift. Luck grants us the people who push our children to excel instead of being complacent.

In our house, we choose to see the gifts.  The blessings far outweigh the burdens.  Joy, in our home, is in the little things...they really are the sum of life.

In the gloaming

The gloaming is that time between day and night, when the moon and sun can be seen, almost side by side.  I love the beauty of that word...gloaming.  It seems like something out of a Bronte novel.

There is so much that follows in the inbetween times of our lives...that gloaming of life.  After the morning of childhood and in-between adult and old age.  It is during this gloaming of my life that truths seem to become apparent.  There are definite blacks and whites in the grey of life  Things we should and should not do.

Things we should never do:
Put an empty (or almost empty...1 tbsp does not count as not empty) milk jug back in the fridge
When you find an ice cream treat hidden in the freezer, you don't get to eat it unless you bought it
Let a friend go out without telling them about that wild eyebrow hair or the black chin hair they happened to have missed.
Let your dog poop in someone's yard without cleaning it up (even if they don't see you letting your dog poop in their yard)
Go complaining to your boss about a co-worker without attempting to settle that ish by yourself first
Try to shove those darn patterns back into those stupid envelopes
Give up
Resign ourselves to less than

Things we should always do:
Show empathy
Give love
Say thank you
Be appreciative
Express gratitude
Be humble
Read often (just for pleasure)
Eat good food

To live our best life, we need to live our whole life...from the morning until the last star fades.

Sunday, August 2, 2015


I have read a lot of blog posts about how tired parents can get.  And boy, can we get tired!  It is a bone aching tired that sucks at your soul.  We all know that tired feeling.  Ugh

But here is a confession...sometimes I am more than tired.  I am frustrated.  As a mom to a kiddo with special needs, this frustration takes on a new dimension.

I am frustrated with being a mom to a mom to a special needs kid.  I am tired of the constant redirection. I am tired of going over the same thing one million times a day and then going over it again the next day.  I am tired of looking for inchstones instead of milestones.  I am tired of diapers and poop and messes that should have been done with years ago.  I am tired of absolutely no alone time...not a moment.  I am tired of the toys in my house being therapeutic as well as toys...nothing can have one purpose...just fun!.  I am tired of doctors and nurses and specialists and insurance fights and IEPS and always being a cheerleader.

I am so very tired of people telling me what a hero I am and how they could never do what I do. I am not a hero...I am doing what I do because there is no other choice.  I am not doing it because I love pushing tubes into my daughter to give her medication.  I did not dream of the day I would put a diaper on my six year old daughter at night because she still isn't potty trained at night.

I know there are so many children who have it tougher or worse and I am very grateful for what I have. still isn't what I dreamed of for myself or my daughter.

Yes she has made me a better person and taught me so very many things that have enriched and enlightened my life and I would never wish her away. Never.  I would not wish her to be someone else.  Never.

Maybe I wish I was someone else...someone who could always see those blessings and the positives instead of getting bogged down in the day to day.  I wish I was someone that these kinds of things came easily to instead of someone who is frequently frustrated.  I wish I held infinite patience and rejoiced when my daughter interrupted me for the one millionth time to ask if dinosaurs were allowed.  I don't even know what that means.  I wish I would never got angry when she screams the entire time I comb her hair or that I would never felt my temperature rise when we have the same melt down over the same temperature of the glass of milk she insists on having the same way every day.

Often, I read those blog posts from moms and dads in the trenches and they make their lives sound mystical and magical...almost religious.  I feel like I am doing something wrong or that I am completely inept.  Maybe my soul is simply dark and unlovable but I have to say...there is nothing magically about laying on my screaming and biting six year old in the middle of a store so she doesn't hurt herself while people look at me like I am raising a feral child.  There is nothing mystical about changing poopy diapers on a six year old on a public bathroom floor because the changing tables are too small for her.  There is nothing religious about blending medicine and food in an industrial strength blender and then injecting it in a tube that connects to my daughter's stomach because she has refused to eat anything but four cheese puffs a day.  Scrubbing the "pokies" out of her clothes every morning, finding clothes with no zippers or buttons or denim that touches her skin, always having to maintain skin to skin contact when she is awake, a limited diet of hotdogs and macaroni and cheese (on the good days) everyday, watching the same shows, listening to the same songs, following the same routine....none of these things seem other-worldly to me.

My life is not mystical or magical.  It does not bring me onto some sort of zen plateau.  It is not a Hallmark channel, feel-good, movie of the week where everything ends up happily every after.  It is messy.  It is hard.  It is frustrating.  At times I even (to myself) yell out about the unfairness of it all.  There is no happily ever after.  My daughter will not magically "overcome" any of her special abilities.  We will always measure in inchstones.  Our learning curves are not on the same field as others.

I am grateful for my life.  I am grateful for the gifts I have been given (and there have been so many) and I am happy...even though I am tired into my bones.  I would not change my life or my place in it.  It is MINE, messes and exhaustion and all.