Truth is Nothing to Fear

I’ve been thinking a lot about the feeling of apprehension lately.  I remember Wolfcub’s echo when we wanted to see how messed up he really was and if he had a chance.  I remember Little Bird’s when we just wanted to see a heart beating, and not an empty womb.  I remember lots of moments that seemed like they were monumental.  Now we are trying to figure out what problems Wolfcub is having with his heart at this moment. 

The problem exists. There is truth in that there is a problem.  Whatever that problem is will not change based on the tests they do.  When he likely has another cath, I cannot control what they will find.  It’s already there.  I may hope for a certain outcome, but the outcome exists. 

My point is, there is no point to the feeling of apprehension or fear of what they may find.  If it is there, it is there. Knowing about it is just giving us a tool to make decisions about where we go from here.  Wolfcub’s heart problems existed before, during and after the echo. Little Bird’s heart was beating. That little velvet box held an engagement ring and that envelope held an acceptance letter to OSU.  What I wanted or wished for didn’t magically change anything.  You cannot change truth. 

I feel like we should always look for the truth, even if the truth isn’t what we wanted or the truth could be something fearful.  Because even if it wasn’t what we wanted, it is no less real.  You cannot change truth, you can only decide what you will do with knowledge of it. I chose to not look at each situation with apprehension, but eagerness.  I am eager to know the truth so I can be wise in my choices.

Being a Good Parent

I remember a long LONG time ago, when I first became a parent, there were a lot of days that I felt like I wasn’t doing enough. I wasn’t doing word flash cards, or baby sign language, or making all of my kid’s own clothing, or taking her to play dates, or doing enough daily structured exercise.  WOW! What a waste of energy.

You know what I worry about today?

Very little.

Why worry? It doesn’t fix or even improve anything and it is EXHAUSTING.

Am I worried about being a good parent anymore? HECK NO! I am an awesome parent. Only awesome parents can keep their act together through all of this. So screw you Suzy Bakes-A-Lot and Sarah Hand-make-all-my-cards.  You have to do all of that stuff to prove that you are doing enough and that you are a good parent to other parents because, unlike me, you haven’t had an opportunity to really have your parenting tested.

…also, just kidding about the screw you part.  I really like your cute cards and cupcakes…

Friends

To all the wonderful people we truly can call friend, who have stayed with us despite the length of this medical nightmare.  Know that we are ever grateful.  I couldn't have more pride in those around us who have kept us sane and constantly reminded us that though we are physically alone here in St. Louis, we are not forgotten.

My Friends

My friends are the family that truly love me unconditionally.
My friends are the ones I FIGHT beside.
They can be blood
Or not.
They DIVE in when the water is rough.
They don't pity
Or cower.
They LEAP into action.
The don't FEAR what they can or cannot do.
My friends are fierce.
They can CALM you in chaos.
They can soften your HEART in hardships.
But they never stop reminding you
That they are ever present.
Ever reliable.
Ever an EAR
A SHOULDER
An ARM
They do not give up.  They do not abandon.
They don't leave you to fight alone.
My friends aren't familiar with benches
For the sidelines are for strangers.

If I Was Home...

On Friday, it will officially be 2 months since our wolfcub has been in the ICU.

It's really hard to not think about all of the things we are missing out on at home - or even all of the things Little Bird is missing out on because we can't be the best parents for her right now.  Having a sick child makes you think a lot about how "unfair" the situation can be for the healthy child.  If we had been able to stay in Tulsa, this would be a much easier situation for our little girl.  When she's sad, she will say that she wants to go to "our house" and that she doesn't want to stay at HavenHouse anymore.  She talks about missing A.C.E., she asks for her little potty (since we had to put potty training on hold) and she wants to see Baby Rowan all the time, but can't because she's teething and has a runny nose.  When only one of us is with her, she asks for the other. 

Our son is missing out on newborn pictures.  He didn't get to have his 1st Christmas with family.  He didn't get to "go home" with Mom from the hospital or go to his first well-child checks, or get his first bath at home.  We only have a few pictures of him where he doesn't have a sternotomy scar - two pictures for his whole life.  He spent the holidays with his chest open lying sedated on a ventilator.

None of this is fair to my children. 

I think sometimes about the Christmas I'd planned for my family that we didn't have.  We spent Christmas desperately searching for ANY open restaurant or gas station so we could eat a meal and crying because we were so thankful that our son wasn't the one a young family had to say goodbye forever to a few doors down.  He looked angry and hurt when he was awake, and cried silently.

When you've been in the ICU for two months, it's really hard to remember that this is temperary and that children are resilient.  It's hard to feel like this will all be a memory one day and not to feel guilty about the world your children are in.  But I can't think about that.  I have to frame my thoughts differently.  I spend a lot of time refocusing when I start to dwell on things like this.

Two years ago (almost), I was having a really hard time working and taking care of Little Bird while Doc was out of town for a month.  I was frustrated and felt alone, and then I realized that I wasn't being the person I wanted to be.

I wrote in dry erase marker across the mirror:

"Stop bitching.  It isn't sexy."

So I think that quite frequently now, but I've ammended it some.

"Stop bitching, whining, or feeling guilty.  Women who are strong but warm hearted are sexy bad asses.  Be one of those."

I want my daughter to be strong yet full of warmth.  I need to show her what that looks like.  So yeah, it's hard to be in this situation, but - when life challenges you, you rise to the challenge.  Smile and laugh and love despite what horrors come upon you. 

We will go home.  We will have many chances to celebrate the holidays together.  Little Bird will get to be potty trained like she's been asking to.  She'll get to play with baby brother all the time.  We'll play fetch with A.C.E. and read books together and remember that distant memory of that time we all pulled together and came out capable of feeling more joy than we had going in.

If I was in Tulsa, life would be easier. But I'm not. I'm here.  This is an opportunity for me to challenge myself to be strong without letting my heart turn to ice.  But we're crossing milestones now.  He's actually getting better.  And we WILL be home.  Soon. 

Why I Believe Mollie Mills is Changing Lives

We all know that the Obesity Epidemic is something we hear about a lot.  There are all sorts of programs in schools designed to prevent the rising battle with weight even students as young as 5th adn 6th grade are happening.

But I truly believe no program can inspire a child like an honest mentor can.  One of my co-workers, Mollie Mills, is in a contest right now to lose weight and live healthier.  She has been working hard for several months to lose weight through healthy choices and exercise.  This woman has the strength and courage to reach her goal weight and she has even been brave enough to be a leader and share her struggle with her students.

Here you can read what one of her students actually wrote to her.

She is truly inspiring and I believe adults like her are truly the solution to helping children live healthier.  If you agree, all you have to do to vote for her is click the green thumb to "like" her posts.  You can go back through her old ones to vote as well.

Thank you Mollie!

For my Grandfather

My grandpa passed away on Sunday.  I wasn't able to go see him to say goodbye, but I did send him a letter.  I wanted so badly to take Rowan to meet him, and during some of his last few times of being lucid, my grandpa would always ask how Rowan was doing.  I wanted to honor him in his last days by thanking him for what he had given me, and I wanted to honor him now by sharing those gifts with you.


Grandpa,

I wish that I could come and see you in person, but since I cannot make it there, I wanted to send you a letter.  I wanted to say thank you.  Thank you for all of the amazing memories you gave me.  When I think of you, I think of your striped overalls and the apron full of clothespins you’d let me wear when we’d walk down the sidewalk, pulling the wagon, to go hang the clothes on theline.  Even when I was really little, you let me help.  I remember standing by the wagon and handing you a clothespin at a time while you hung up your shirts. 

When my husband and I firstlived in a house, we hung a clothesline in the backyard.  I put my laundry out on the line to dry andevery time I pinned up a shirt, I thought of how much fun I had in your backyard when I was a little girl.

I remember one year, when we had a family reunion at yourhouse, you offered to drive all of us kids around in the wagon attached to the tractor.  You drove us down the hill and around the little pond, and finally, when we reached the other side, drove us all under alow lying branch covered in web worms.  Iremembered that we all screamed and laughed.

I loved running down the big hill and especially loved the tractor rides.  I’d always get nervous and pretend we were crossing a dangerous bridge when we’d go along the narrowpath by the pond.  We saw a deer one time, and every time after that I hoped we’d see one again.  Did you know that Dad now drives Evelyn, his grand-daughter around on the tractor?  He wears a big cowboy hat like you did too.

I remember catching fireflies and putting them in jars inthe summer.

I remember helping in the garden, and the beautiful birdfeeders, and that cat that came around all the time.

I remember when I was older, one night I couldn’t sleep. You were up and sitting at the table eating Quaker Oat Squares.  You told me stories about the farm when youwere growing up.  You’d smile warmly whenyou talked about it and tell me stories about your horse and country life.

I remember the nights you’d build a fire in the fireplace and how magical the fire glow felt.

I remember getting to sing with you at Great-Grandma’snursing home.  You had such a loud, strong voice and you let me sing for the all the people living at the resthome.  I loved the old hymnal songs and feeling like I got to make you proud.
 
I have you to thank for all of those beautiful memories.  I love you grandpa.  I miss you.

Let Go, Let Go, Just Jump In

It's hard to post on this blog very much since so much of my time has been spent carrying for Wolfcub lately.  (We determined little tree was not fitting with his temperament...so we have little bird and wolfcub) But my life has changed quite a bit in the last few months.

Originally, I thought to spare Little Bird all the chaos and changes surrounding Wolfcub's health fiasco.  She stayed with her grandparents in as stable an environment I could control while Doc and I took care of her little brother.  This was fine when the plan was that he would only be hospitalized for a month.  That month expired two weeks ago.  As much as I wanted this to be a glimmer, it's become more than that.  So we've decided to dive into our new life.

Little Bird is living with us at Haven House in St. Louis now (soon to be Ronald McDonald due to our prolonged stay and the cost of Haven House).  Our family is together. Instead of trying to "spare" our daughter, she's a part of it now.  When we thought, "It will be a month.  Then he will come home and she won't know we were gone," I was fine with Little Bird not being involved, but that isn't the case anymore.

So everyday she wakes up, eats breakfast, comes up to spend half an hour with brother, goes to play for a few hours, sees brother again.  Then she eats lunch, sees brother, goes to take a nap - and depending on the day, either comes back up to see him before dinner or plays at HavenHouse with us for the evening.  She listens to Wolfcub's heart with a stethoscope.  She talks to him and shows him toys.  We're making this normal for her.  She gets to help us take care of brother.

I wish I'd trusted that she could handle it and done this from day one.  We showed her a picture of Wolfcub intubated and she got really upset so we shied away from it.  When she saw him in person, all she said was "he's so cute!"