She Runs A Good Race

mothering is a marathon

The Burn

UnknownI’m going to burn up this year. 

My favorite Equinox instructor (and my friend), Rebecca, always tells us, when we are dying in her hard-core fitness classes, that the burn means that change is happening in our bodies.  We want that burn.  We need that burn.  Even if we are screaming and whining like little girls on the inside.

She always reminds us we can do it and to just push through the burn and DO. NOT. GIVE. UP.  Embrace it, when what you really want to do is stop, quit, and take a sip of water.

Every time Rebecca says this, it speaks a life-metaphor to my soul.

Right now we are in a particularly challenging new phase with Ryan.  Symptoms of PWS are popping up in intensity, frequency, and severity.  And may I just say for the record that Prader-Willi syndrome is from the pit of hell!  I will stop there, before I begin to rant and rave.

In this new season of high anxiety for Ryan is high anxiety for us.  All of us.  We “walk on eggshells” as they say so as not to set him off, and then be forced to deal with crying, perseverating, and tantruming.  His food drive, (what makes the syndrome famous or newsworthy) is kicking in and I must be more vigilant and watchful at parties and restaurants, so that he doesn’t overeat.  Overeating in PWS is harmful and life-threatening.  It’s not just like if you or I overeat at a meal and feel uncomfortable, and our stomachs pooch out all prego-style.  (For more information on PWS, please visit the website pwcf.org.)

Throughout the 10 ½ years we have raised Ryan, I have come to describe in different ways how it affects ME personally:

“It comes in waves.  The stress, the pressures, the appointments…there is an ebb and flow.”

“It’s like living with chronic grief, deep below the surface, but always there.”

“I am NOT grateful for having a disabled son, but I AM grateful for how my soul and heart have expanded as a result of our journey.”

And on a completely maddening and exhausting day:

“F— this syndrome and how it tortures my son and the rest of us!!”

It’s January 2014 and I am burning.  My emotions, my thoughts, and my heart are on fire, as we deal with new behaviors or more intense behaviors.

I have a choice.  To just get flipping angry or have pity parties or give up and use some form of escape to numb the pain and stress of it all.

OR—I can remind myself that this BURN means that changes can happen in me.

Changes like practicing and experiencing gratitude in the midst of hardship and grief.  Changes in the form of implementing new methods to manage Ryan’s behavior.  Changes in my attitude and perspective.

I will embrace the burn in this new year and phase with Ryan/PWS, and therefore embrace the changes I desire for my soul.  That God desires for my soul, my family, and home-life.

Painful? Yes.  Easy? No way.  But like I do in Rebecca’s classes, I will close my eyes, breathe deeply, and pray through the burn.  I will remember that I CAN DO THIS.  And I won’t give up or give in.

Advertisements
10 Comments »

A Raw and Honest Love Letter

126018790Dear Sweet Mama,

You have been given an incredible, amazing, and heartbreaking gift.

You have been given a child with “special needs.”

The needs could range from severe allergies to severe handicaps and/or anything in between.  Not that there is a spectrum and your story is worse than another’s mom’s story.  Or her story is worse than your story.  You just each have a story.  And a journey that has been difficult.  It may get easier.  It may get harder.  BUT you are all “special mamas” together.  You are all in this TOGETHER.

And it’s not the road you asked to travel down.  You were hoping for the raod that leads to Italy, Fiji, or Santorini.  Yet instead your travel stop landed you in the middle of a war-torn country you’ve never been in.  There are landmines to baby step around.  There are well-meaning but insensitive people there.  And there are downright nasty, unjust humans there, too, who make your struggle to provide everything your child needs, all that more challenging.

It is TRUE, though, that in this distant land of life with disability there are angels.  There are lovely souls who care, and whose patience and compassion are as vast as the universe sky.  There are angels each step of the journey if you look for them, in the smallest cracks of your day. YES.

Sweet Special Mama, do not think for one second that your experiences in Motherhood are in any way on par with families who have not encountered disability.

Do not think for one second you should be like THAT MOM, wife or family.

Do not expect that you will cherish motherhood and parenting in the same way.

Do not expect that you will not need breaks.  Lots of them.

Do not expect to never fantasize what life would be like if your child was born perfectly healthy in every single possible way.

Do not condemn yourself for wishing, hoping, praying, and pleading for a re-do.

Do not condemn yourself for wondering if life would be easier for you, your husband, and your other children, if your child passed away.

You, Mama, carry heartache.

You carry loss.

You carry an on-again off-again grief.  And it comes in waves.  And in your everyday life, its there underneath the surface, threatening to come up.

It takes some of your joy.  It makes you tense.  It makes you more snappy and less carefree-and-happy.

You have become more tender and you have become tougher as a result of this terrific trial in caring for your disabled child.

And it’s ok.

 

You are ok.

 

You are very ok.

 

You can do hard.  You already have.

I know there are moments you absolutely want to curse and cry, “Why me?  Why us?”  You want to pull your hair out after a day of dealing with illness, or medical specialists, or anxiety or behavioral issues.  That is normal.  You are normal.

You need to vent.

You need to cry.

You need to share, with raw intensity and honesty, with other moms. Just be WITH.

You absolutely must exhale or your soul and spirit and body will implode.

That cannot happen because your precious child needs you, mama-bear-advocate-extraordinaire.  So find, seek, and chase after moments or days of respite.

In your brighter moments, you completely recognize that you are deeper, richer, more compassionate and more sensitive to the needs and crises of others because of what you have been through.  Because of what you go through every day.

Yet, it is VALID to wish that this unique opportunity for major emotional, spiritual, and intellectual growth was not given to you.  That personal growth could have come, should have come, in a different vehicle altogether.  No mother, however excellent and mature she is at having wise perspective, wishes for their child to be disabled.  No mother.

So again, do not place unrealistic expectations on yourself, your heart, your mind, and your day-to-day dealings with disability.  It is hard.  It is maddening.

And when the sweet moments and small victories come, inhale them, deep into your soul.  Because of these, you will survive.

Sweet Special-Needs Mama, you will survive, and the sun will still shine.

I love you,

Jessica

 

 

11 Comments »

Still No Tears Over Sandyhook

I am surprised at my reaction to the Sandyhook tragedy.  Or my lack of reaction, in terms of tears and sadness and heaviness.

For anyone who knows me, I am a touchy-feely girl who cries at sappy commercials and gets choked up EASILY at others’ joys or woes.  I FEEL.  I LIKE TO FEEL.  I go to movies that are contrived and emotional because I like to FEEL things.

Last Friday I was in a meeting until almost 1:00 pm (Pacific Time), so I did not hear about the Sandyhook incident till after that.  I did not turn on the news.  I did not check the internet.

I saw people’s posts all over Facebook. But I could not read any articles.  I could not look at pictures.  I could-not-would-not look at anything too closely.

My defense mechanism was and is to put it at arm’s length.  I could not dare personalize the drama and imagine this horror happening at my little Kate’s elementary school or Ryan’s elementary school.  I could not think about darling little children being gunned down by an evil maniac.  It was and is JUST TOO MUCH  for me.  So I push it away.  I don’t even want to talk about it.

And although I recognize this is my defense mechanism, I feel embarrassed and kind of ashamed.  Especially when I have briefly read other people’s dramatic posts.

I still have no tears.

The jaded part of me says, “Bad things happen all the time.  There are horrors going on daily in millions of people’s lives.  We live in an extremely broken world.  This is yet another unbelievable story.  And there will be more.  I cannot let myself get dragged down, or dwell on it.”

Please don’t judge me.  I am not as insensitive as this sounds.  Maybe this cynicism is born out of experiencing crisis after crisis in my own family life.  Maybe it’s because I know this world is not as it should be, not as God designed it to be.  And Heaven will be.  (I don’t mean that morbidly, friends.)

The only article i did read was “I Am Adam Lanza’s Mother” by Liza Long, a freelance writer, whose piece made it into the Huffington Post.

As a mother of a son with special needs, I did personalize THAT.  Although Ryan does not have the same challenges as this young man did, I do think about the greater mental health issues of our country and the lack of adequate funding and help for all affected.  It may become epidemic someday especially if there are not proper, long-term, costly-but-made-affordable-to-most, interventions.  For all ages.  Many children and adults will Fall. Right. Through. The. Cracks.  I do not want that to be Ryan, especially if his psychiatric health takes an ugly turn.

I thought that maybe writing about this today would elicit some suppressed emotions. But it has not.  Maybe it will all be delayed.  Maybe not.

What are your thoughts and reactions??

2 Comments »