Saturday, January 26

Friends and the power of being genuine

Last night was fun!  These are my neighbor girlfriends.  I think most of us have been friends for many years and a few of us for over ten years now.  Six girls together is a whole lot of estrogen and barely a moment of silence.  Seriously.  I left before midnight and I don't think there was a moment within the nearly six hours together that wasn't filled with conversation and laughter and some real thinkin'.

We got together last night to catch up on things and to plan our gardens, turkey raising, chicken orders and to talk about heifers and Finn sheep.  Might not be the "usual" group conversation, lol, but it was just what we wanted.  And the neat thing is we can all "be ourselves" around each other.  Ask questions.  Make strange comments (okay that was only myself).  Complain or praise about recent family events.  You get the picture.  Be real.

I've naturally been a person that is consistantly the same around whomever I am with.  At work.  At home.  Volunteering.  Hanging out at kids' school.  On my farm.  I'm Sandi no matter where I am or who is around me.  It's a fairly simple life I lead, ha ha.  No pretense.  Nothing fake.  I admit my mistakes (if I can remember them), show gratefulness to others when the opportunity arises, and just in general... I'm real.

Authentic living sometimes means you are honest when you need encouragement.  When you feel the need to expand your friendship circle or ask someone for advice or just a hug!  Sometimes honesty and "laying it all out there" with a friend might feel like more of a stressor, make you feel all naked and vulnerable, you know?  But what I was reminded of recently is the more honest I can be on my path in this world and the more friends and encouragement and people that I care for and that care for me.... all the better!  Although at times living genuine makes me get a bit squirmy and uncomfy with all the honesty.  I know the end results will be a better me!  A better mom, a better wife and a better friend to someone else.

I know myself.  So I can be myself.  I am very happy in my own skin (although I'm trying to lose the next 20 pounds, heavy sigh thinking about running on the gym treadmill nightly).  And even though I haven't stepped foot back into our home church since October (wide variety of reasons) I feel more connected to God than ever.  It's amazing how many sermons from Cornwall church I've listened to now and how much more time I spend actually reading my bible and having devotions with my kids.  Being me means following God and for me, that makes me a better person.

"For those God foreknew he also predestined to be conformed to the image of his Son."   Romans 8:29


Breakfast is the most important meal of the day, right?

But my family is rushed most mornings and we weren't eating good whole foods for breakfast.  Mostly, it was cold cereal or toast.  
So I decided to make freezer breakfast burritos.  And they are a hit 
with my family.

We used farm raised ground pork, onions, spinach, red potatoes, feta and our pastured chicken eggs.  I even made some vegetarian ones.  If you make these just cook all your ingredients first.  Cube the red potatoes and oven cook, saute ground pork and onions with amazing Penzy's spices, and we used chopped frozen spinach.

I wrapped each one individually in foil and stacked them on a cookie sheet in the freezer.

Nate and I tried them this morning and all it takes is unwrapping from the foil and microwave for two minutes.

I used artisan tortilla wraps, whole wheat or corn, and some regular flour tortillas.  Mmm.  And since I was able to make twenty wraps for about $20....that means a buck a breakfast which is pretty darn good!

Sometime soon I'll post about the freezer meal girl group I'm in and the amazing 15 meals we exchang every 7-8 weeks for the last year.  The whole food recipes and affordability will make you happy!

Monday, January 21

It is well with my soul.

How does the hymn go?  
The sky not the grave is our goal.  

Well a day sledding at Mt Baker made all well again with my soul.  Reminders that God created such amazing beauty in the world and so much fun for us.

Saturday, January 19

Dr McGuinness

Tomorrow we are going to a party to wish our pediatrician "happy trails" as he heads off on a slightly new career.  He is turning his heart and skills toward being a hospitalist and leaving a very long career as a pediatrician.  He was the twins' doctor for five years which by physician standards isn't terribly long, many families see their pediatricians until adolescence, but I'm here to share with you it's not the length in time.... but rather the miles that we put on that poor, poor doctor!

When I had received the prenatal diagnosis that one of the twins would probably have Down syndrome, I set my mind to research and learn everything there was on the syndrome.  The diagnosis.  When we received another possible diagnosis that Tommy would have Dandy Walker malformation of the brain, I set out again to learn everything there was on that.  To study the diagnosis.  When our OBgyn asked "who" we wanted as a pediatrician, my jaw dropped, I had no idea.  I hadn't researched a pediatrician.  I only studies diseases, syndromes, malformations.... but had no idea about local skilled pediatricians.  I learned then that my baby would be a baby first and not defined by a diagnosis.  And as the delivery of the babies was quickened by a few weeks our OBgyn mentioned that since we were undecided on pediatricians, we could "take our chances" on whomever was on call that night and "see if you click" and want to chose him/her as our doctor.

After the twins were delivered and we were nestled back in our hospital room loving baby boys, we welcomed our family and friends to share the day with us.  And the "pediatrician on call" stopped by to meet the sweet nuggets of babies.

When Dr. McGuinness walked in he didn't really seem like a doctor at all to me.  He seemed more like an uncle that you saw year at Thanksgiving.....kinda ordinary, tall, not really "manicured" like other docs I knew, very friendly, and most notably humble.  Extremely humble.  I thought he wasn't really a doctor.  Until he started talking.  And I realized he was one really, really smart, kinda ordinary, tall, friendly, humble.... Pedatrician.

The moment engrained in my memory is that of Dr McGuinness asking to hold Tommy.  While he was less than an hour old and with one hand under Tommy's neck cradling his lil floppy head and the other hand under his bum, so he could hold Tommy's face directly across from his own and admire him...... the doctor edged himself onto the corner of my hospital bed and then up and completely onto it and kinda sitting right next to me in the bed while admiring with outstretched hands a sweet little eskimo bundled Tommy.

And he said to me in a calm and reassuring "doctor type" voice, "... he is perfect, congratulations...".  And I smiled.  And cried.  Simultaneously.  And of course said yes a million times.  And when I finished that good long ugly cry that only happens post partum (and a few times sprinkled thru each year, when you are a mom to a child with special needs, just so you don't get bored) our eyes met and Dr McGuinness continued "and I'm pretty sure he indeed does have Down syndrome ...... and we will want a genetic test to confirm".  And that was the last time I can remember getting such significant news in such a caring and loving way.

The short story is that we chose him for our pediatrician.  But never got the opportunity to stay in Bellingham that day as we were whisked to Seattle Children's and lived there.  For way too long.  But brought back a much, much healthier Tommy.  And a sweet Liam who spent much of his infancy cradled in my arms in hospital rooms and lobbies and on walks on the Birke Gilman Trail.

And we spent five years seeing our pediatrician and learning that he was indeed very, very smart.  He had diagnosed Tommy with Hirschsprung's disease, Down syndrome and eventually would play a major role in a diagnosis of moderate immune deficiency (Polysaccaride antibody deficiency), and eventually low platlet counts.... not only because as a physician he had a scientific skill set but also because he cared and he listened and he asked questions.  He treated Tommy as a person and us as a family.

Dr McGuinness saw Tommy many times over the five years when things were not looking really good.  It seemed a few times, long after the peds clinic had closed, Dr McGuinness and I would be standing in front of Tommy's glowing xrays on a hallway monitor and he would be explaining again why it looked like pneumonia and how to be admitted to the hospital ... or why it looked like it wasn't.

To say that the man could talk, is an understatement.  Dr. McGuinness imparted knowledge to us as parents with every breath.  And often times there was well over an hour, or two, in an appointment.  For a Christmas gift one year I asked him if he preferred wine or beer and he said "beer, definately beer, because my wife likes wine and it will be gone".

He showed me how to put in a g-tube *almost* with just one hand.  Which would come in handy a few times especially pulled over on a shoulder of I-5. We asked him to sign more paperwork then probably all of his other patients combined, FMLA, insurance appeals, grant applications for medical items, prescription changes, stacks of paper.

He taught me to want to know more.  And in fact, to want to know everything.  And to teach others what I learned.   And to care for families as a whole, not just the child with special healthcare needs.  Family support was taught to me early.   Once when the immunologist told me that Tommy couldn't attend public school nor could he attend sunday school, both because of his immunity, I told Dr McGuinness I wanted to give Tommy a "normal" childhood and the restrictions would cause him more consequences then the possible germs.  Our Pediatrician understood and said we could try school and try church... and six years later the support in our supported decision still rings in my heart.

He taught me to ask every question, because he showed me that he would make the time.  His pediatric history is still at Children's as every single person who cared for Tommy during five years there, knew not only where Bellingham was, but also who Dr. McGuinness was and they would smile when they said he was the best!

Much love to you friend and I hope as a hospitalist you see Tommy and I far less! 

Sunday, January 6

Trusting process (video at the very end)

A traditional American Indian prayer seems such a simple way of reminding ourselves to let go and trust in a process larger than us as individuals, "May we be helped to do here whatever is most right."

I'm finishing a few books right now and one of my new favorites of all times is now "Kitchen Table Wisdom"  by Dr. Rachel Remen. 

Although I have practiced christianity my entire life, it is only in the most recent years that I can say praying has brought me the most quiet and holy of moments.  Times when my fear and joy are held in the most taught equilibrium and I feel the entire world has fell silent.  I pray when thankful.  I pray for people.  I pray for knowledge and discernment.  

"Each person is born with an unencumbered spot, free of expectation and regret, free of ambition and embarrassment, free of fear and worry, an umbilical spot of grace where we were each first touched by God.  It is this spot of grace that issues peace.  Psychologists call this spot the Psyche, Theologists call it the Soul, Jung calls it The Seat of the Unconscious, Hindu masters call it the Atman, Buddhists call it the Dharma, Rilke calls it Inwardness, Sufis call it Qualb, and Jesus calls it The Center of our Love.
To know this spot of inwardness is to know who we are, not by surface markers of identity, not by where we work or what we wear or how we like to be addressed but by feeling our place in relation to the Infinite and by inhabiting it.  This is a hard lifelong taks, for the nature of becoming is a constant filiming over of where we begin while the nature of being is a constant erosion of what is not essential.   We each live in the midst of this ongoing tension, rowing tarnished or covered over only to be worn back to that incorruptible spot of grace at our core".  -Mark Nepo

When I am troubled by difficult decisions, fearful about how my choices will effect the future, worried or anxious... I try to rub the tarnish off my core of grace.  And I am reminded that I love unconditionally.  That I trust in processes.  I can see and I can value everyones perspective and input and help.

In "Kitchen Table Wisdom" she reminds that simply trusting process has a great power.  An example is given of a mother present at the birth of her grandchild.  When her daughter is calling out for her help and in great pain of childbirth, the soon to be grandmother is reminded that all she can do is hold her daughter's hand.  Your experience is impotent as a mother in moments where you can only trust in process.  You simply must trust that the process of childbirth will reach resolve.  Without trusting in the process, all of our actions are driven by fear.  Fear is the friction in all transitions.  Having been in conversations with our local school about supports to Tommy for his education, I have been reminded to trust in the process.  Simply hold my son's hand, talk to the people in my path and be present in those conversations with the discernment needed. 

At a recent open AA meeting, I accompanied my daughter a recovering alcoholic, and listened to a very gifted speaker who talked about humility.  He spoke of the ability to visualize humility in ourselves as being the "eye of the hurricane".  Even though we have pieces or are part of the swirling world around us, we need to center our hearts as the quiet in the center of the hurricane.  Because in the end, if we really involve ourselves too much in the process, too much in trying to influence others... we become prideful, anxious and fearful.  If we visualize ourselves as the center of a storm, we can more easily allow others the dignity in their pieces of processes and their own success.  Which creates the most powerful form of grace.

As with my own daughter and her road to recovery and addressing mental health concerns, I can listen.  Listening is powerful.  Showing your attention and caring is a source of healing to someone.  Sometimes, often (ha ha), I don't get a single word in when she wants to talk.  And I remind her, and sometimes others that I meet as new parents to childrens with disabilities or just people that I meet in everyday life, if they want to talk to me there is probably nothing that they can tell me that would surprise me or make me feel (more or) less of them.  There isn't a life experience that they couldn't share with me, no fear that I couldn't somehow understand, no pain or suffering that I wouldn't remember somewhere in my own lifetime.  I am human too.  So filled with mistakes and feelings and thoughts...we have so much in common with each other.  It is so important for us as community to connect with each other.  The human experience is so much more fulfilling when we actually listen to each other and meet one another in a place of humility.

After meetings to further some supports for Tommy's kindergarten education, I put together my first "video". That's in quotes because you will soon see I had no idea how to edit a video.  But, it's a collection of his kindy photos for the first three months of his education.  Of course he had two and a half years of early intervention preschool.  But this is kindergarten.  It's big stuff.  He has a wonderful team of highly skilled educators.  An amazing paraeducator, the Tommy whisperer.  A life skills teacher that is genuine and cares about Tommy, and has a total of 17 kids under his teaching.  A skilled SLP that is piecing three modes of communication together for him.  An OT that is designing a more specialized program for his sensory diet, and it will benefit more than just his little self.  And an administration that is listening to our needs.  We are trusting the process.  And grateful to God that has gifted our family such a wide smiling, toe headed, hurricane of a human being.

Tommy Adventures