Tuesday, May 22, 2012

raising a child with special needs.

here's a video ben and i recorded for my work,
talking about some of our thoughts and struggles while raising caleb.

there were so many extremely difficult moments during those first few years,
and so many rewarding moments. it's something i've written about many times,
but for some reason when i talk about it, vivid memories come flooding back to me.

i know there are many others out there, several of my own friends,
who have children who are struggling.  whether it's physically,
behaviorally or emotionally, it's something that can be hard to face as a parent.

personally, being a mother to caleb has been a journey.  i fought bitterness for a long time,
feeling like i somehow missed out on the motherhood that all of my friends and family had talked about.  i felt overprotective and worried that others thought i was crazy at times,
but i also knew that i was the only one who knew my son.  i tried to find a balance between
treating him like he was different....and treating him the way ne needed because i knew that he actually is different.

i'm still working on that balance, and so is ben.  we try to put our own fears aside
when making decisions about caleb.  i push away my worry about the past,
ben pushes away his fear of the future.  and we do our best to live in the present, and the
reality of what caleb is facing now.

being a parent isn't easy, and being a parent of a special needs child is even less easy.

but there is nothing like the bond that i have with him, and like i say in the video,
i wouldn't trade one moment that i've had with him.

Sunday, May 13, 2012

the chair.

Mother's Day, the year 2005.

"I've got a surprise for you," he said. "Close your eyes." And he grabbed my hand, leading me into the bedroom he had locked me out of for over an hour.

I closed my eyes and smiled as I played along, doing my best to still walk gracefully in spite of my nine-months round and pregnant belly.  Due in two weeks with our first child, a son.

I heard the doorknob twist, and then he said,

"Okay, you can look now.  Open your eyes."

 My eyes swept the bedroom, looking for something out of the ordinary.  There was the cradle, with the brand-new baby bedding proudly displayed inside of it.  The small dresser full of soon-to-be-worn soft, tiny clothes.  A night table.  Our bed.  And then, I saw it.

Tucked to the other side of the bed, was a brand new tan glider chair.

"Surprise! Happy Mother's Day!" Ben said.  "I wanted to give you something you could use to rock our baby to sleep on the first night you came home."

The smile on my face grew wider as I reached over and hugged him, tightly.

"It's absolutely perfect.  I love it!  Thank you!" I replied, as I immediately sat down.

"You can recline and rock at the same time, there are pockets here on the sides to be able to store different things like baby blankets or whatever you want,"  he explained as I rocked and looked up at him.

"How can we afford it?"  I asked,  Freshly graduated from college, living in my parents' basement, barely making minimum wage, we were beyond poor.  This was the very first piece of brand-new furniture we had purchased; before this, everything we owned had been generously given to us or bought at a second-hand store.

"I saved up.  And Danny {his friend who worked at a furniture store} was nice enough to give me his employee discount."  

I sat there, and smiled at him, and rocked.  In that moment, I felt like a queen who couldn't want anything more.  I had no idea then, what that chair and I had in store for us.


It was the place Ben and I went to, when just weeks later we brought home a very small and very sick baby boy.  It was where I rocked this sick baby boy, back and forth, singing through his endless cries and frightening seizures.  It was in this chair that I sat as tears streamed down my face while my husband administered a priesthood blessing not only to this fragile baby, but also to me, who was completely overwhelmed.  I heard words of comfort and felt a renewed strength in this chair, as I dried the tears on my face and counted my blessings. 

One night, while I was taking a break from my singing/rocking duties, I overheard a song.  Sung so sweetly by the father of my child that I began to cry at the sound of his voice and the words of the song.  I came back into the room, closed my eyes and listened as my husband rocked in the chair with our little boy.

Lay down your weary tune, lay down
Lay down the song you strum
And rest yourself ’neath the strength of strings
No voice can hope to hum
Struck by the sounds before the sun
I knew the night had gone
The morning breeze like a bugle blew
Against the drums of dawn
The ocean wild like an organ played
The seaweed’s wove its strands
The crashin’ waves like cymbals clashed
Against the rocks and sands
I stood unwound beneath the skies
And clouds unbound by laws
The cryin’ rain like a trumpet sang
And asked for no applause
The last of leaves fell from the trees
And clung to a new love’s breast
The branches bare like a banjo played
To the winds that listened best
I gazed down in the river’s mirror
And watched its winding strum
The water smooth ran like a hymn
And like a harp did hum
Lay down your weary tune, lay down
Lay down the song you strum
And rest yourself ’neath the strength of strings
No voice can hope to hum

I made him repeat the song over and over so I could learn the words as he rocked, and it became one that I sang to all of our children.  

It was in this chair that I slept for two weeks straight, holding my son upright because he could not sleep otherwise due to illness, as humid, cool air from the humidifier blew on us both, curling my hair with its dampness.  It was where we read books, and snuggled with his beloved bear.  

It was in this same chair that I sat, absolutely terrified.  

My tiny baby was now 18 months old, and I was being left alone with him for the first time in 3 days.  It was just after his 35 minute seizure, where he defied the odds by surviving, and surviving without any brain damage.  But I could not get the image of him out of my head, and was frozen with fear at the thought of it happening again. I could not bring myself to leave him on his own, so I stayed in this chair, in his room.  Watching him play, clinging tightly to him as he would doze off to sleep, silently offering prayers of gratitude while at the same time begging with my Heavenly Father to never have to put him, or myself, through this again.  Eventually I surrendered what I could not control, and after seven days in that chair, I returned to my own room.  And learned to let go.    


I sat for the first time with my second child in this chair when she was only two days old. 

I was on the endorphine high after just delivering, smelling in her sweet baby smell, admiring her perfect little lips.  I was convinced that this time would be different, and when her cries of colic began at a couple of weeks old, it was in this chair that I sat and sobbed again. The trauma from my experiences with my first child was consuming me, the fear that I did not have the strength to do this again never leaving me.  As I sat in this chair, I prayed again and allowed determination to take over.  Finding the deep-down resolution that I could do this, somehow, some way, and come out on the other side of it.  It was sitting here that I learned to love without fear, and endure.

And I did.  We did, this little girl and I.  

For the second time in my life, we rocked, she cried, I sang.  The chair survived the weight of our bodies and the returning experience of being constantly used.  And as she grew, the burden lifted.  The sweetness of the experience was only tasted after the bitterness.  I watched her become a beautiful and curious little girl, playing in her room around this same chair for hours.


As we once again pulled this chair out of storage, I stared down at my big belly, soon to become a mother for the third time.  I wondered anxiously how often this chair would need to be used, how frequently I would sleep upright in it, as I had so many times for so many nights.  This pregnancy was unexpected and unplanned, and I had mixed emotions of gratitude, love, guilt and concern in my heart during the entire 9 months.  I hoped the chair would hold up one more time.

But as this new baby girl and I have rocked in my now 7 year old chair, it has been different.  It has not been because it was the only thing that would bring comfort, to sing through pain and tears. Instead, I rocked with her because I wanted to hold onto this moment for as long as I possibly could.  This baby who has brought peace and allowed me to be the mother I had always pictured I was. It was sitting in this chair that I learned how to heal.  


Last week, I was rocking this now 9-month old daughter, my cheek resting against the back of her soft little head, and I sang.  The words of the song now were engrained into my memory, so much more meaningful than they had been the first time I sang them:  

Lay down your weary tune, lay down
Lay down the song you strum
And rest yourself ’neath the strength of strings
No voice can hope to hum

Just as I finished the end of the first verse, I heard a POP!  I jumped up, startling the baby as the chair gave way and broke.  Though I knew the time was coming...the chair had been struggling for a long time, I was still sad to see it go.  So many memories I had in this chair, some of them painful, some of them joyful, but always teaching.  About love, fear, prayer, mercy, surrendering, hope, grace, gratitude and peace.  

In a strange way, I felt that this chair symbolized moments I had felt as a mother.  I myself had felt worn and broken many times, wanting to give way beneath the weight of all that I had gone through.  

It is now Mother's Day, 2012 and this chair that has been with me through so much now pathetically sits in our garage, waiting to be taken to the dumpster.  I can't help but feel a little sad, like an old friend is gone.  

But as I've thought back I've realized just how much I have grown, as I have watched these little people grow.  Day in and day out, I have been there and have never given up.  That is what motherhood is for me.  Giving of myself until my back hurts, while filling my heart until it is so full of an abounding love that it feels like it could burst at any moment.  It's something that is indescribably fulfilling, though it is a constant ache that is both good and hard.  

I would not trade these moments in that chair, no matter how difficult they have been at times, for all of the riches in the world.

I love, and am so grateful, that I am a mother.    

mother's day, 2012.

mother's day has become one of my most favorite days of the year.  

not because i am doted upon, or given the day off {for some reason, most of the time it seems more difficult than the ordinary days, it's like my kids can sense it and are more nuts than usual}, or showered with gifts and flowers, 

but because i really take intentional time to reflect back on

may 16, 2005

february 27, 2009 

july 26, 2011

which have turned out to be 3 of the most important, life-changing, soul-changing days of my life.  mother's day is the day that i spend with them, and the day i spend thanking my lucky stars that i am their mother.  

i could not feel more blessed...
even though some days i'm scared out of my mind unsure
of the job that i'm doing.
 mostly though,
when i'm looking at these 3 beautiful spirits 
that i get to spend time with every day,
helping to 
mold and shape,
and teach,
and love,

i'm just grateful.

Thursday, May 10, 2012

on how pinterest is the new blogging and where i channel kirsten dunst channeling marie antoinette.

so it's not a secret that bloggers are a dying breed.  well, some of them aren't.  the famous ones with a bajillion followers that might be making a small income and are writing books and such, i'm sure they're around to stay.  

but little by little, i've seen a lot of my personal friends dwindle off their blogs. and i admit that even i have done this.  not because i've wanted to, i am still living life as a continual blog post, thinking through scenarios and creating words to write to make them come alive.  but what i am lacking is time, in a serious way.  ben is gone almost every night, and i've worked out a system so that every night, each kid gets about 30 minutes of one-on-one time with me during our bedtime routine.  once they're in bed, i clean up the house and then i start in on writing articles and doing video blogs for my work, usually around 10 pm.  at some point ben comes home, we fill each other in on the details of our day, and i go to bed around midnight or 1 a.m.  and by that point, my brain is fuzzy and fried and the words have mushed together and are no longer creative, or funny, they are just words that no longer form into coherent thoughts. 

i miss blogging, i miss writing in a way i can't describe.  

blogging has been my space to record some of my most insightful thoughts, some of my most painful memories, some of my most fearful moments as a young mother, and some of the most blessed and rewarding minutes of my life.  it has helped me to remember, to be both introspective and keep my perspective.  to look at this past journey of 5 years and see my own spiritual, mental and physical evolution.  recorded moments of my children that i would have never really focused in on otherwise.  

i have heard the phrase "live in the moment" so many times, and how some mothers have expressed that blogging has taken away from their ability to do this...because it is time-consuming.  or time wasting.  but i completely disagree.  everyone chooses to "waste time" somewhere....television, music, reading, exercise, sewing, shopping, eating, traveling.  any of these things can be a waste of time if they are not enriching our lives somehow.

so blogging taking away from my ability to live in the moment?  it has done the opposite for me.   it has heightened the good and the bad, the beautiful and the heart-wrenching.  as crazy as it sounds, colors are richer, and emotions are deeper because of it.  because i am constantly aware of what is going on in my little life, constantly snapping pictures, remembering phrases and looks and tiny details, down to the very eyelashes of my children.  like when i'm walking into a room to find leah randomly sitting with a piece of cheese on her face, a moment i would have laughed at but most likely not have reached for the camera.  

or hilarious exchanges with ben that otherwise would have been forgotten.  or moments where i feel love so deeply for these 4 people in my inner circle and i can express it without just feeling it and having the moment gone the next minute.  and i am so glad that we get to have these recorded moments of our lives that are passing by too quickly. 

last night i went through our private blog, the one i started in 2007 while we were living in north carolina, working living and working at a group home with a load of crazy teenagers and an even bigger load of adventures that nobody in their right mind wanted to have.  not only did i read about our surreal experiences there, but i also read all of the hilarious and supportive comments of my blogging friends around the world.  and yes, i can say world, because one of them lived in korea, and one in china.  :)  

and you know what?  i missed it.  nope, not the group home, not for a second.  what do you think i am, insane?  what i missed was that connection with my friends and family through writing down experiences. 

i also miss my friends.  yes we have facebook and can follow each other on pinterest, but for me it's not the same.  and it's not just because i love to write, though i do.  it's why i was an english major in college for a year.  but i also miss it because i love to read about my friends.  isn't there something odd about how now most blogs that i read are complete strangers?  there's something amazing about that too, don't get me wrong.  reading the words of someone who i have never met and they just get me in a way that even i can't describe myself?  it's so fulfilling. and there are some blogging friends who i've never met but actually consider and call my "friends" because of the back-and-forth exchanges we've found through blogging.  

but with my friends, who now live spread across the country... i guess when this all started, this blog rage, i had romantic visions of all of us growing old together, blogging about our children's high school graduations, and weddings, and grandchildren, and retirement, and adult diapers.  i may or may not have envisioned myself laying in my bed at the old folk's home, with my dentures next to my computer, my arthritic fingers slowly typing about the featured split pea soup for lunch, and how my body is falling apart but my brain and spirit are still alive, wondering what heaven will be like and being able to still reach across the virtual world to find a connection with a loved one who is not sitting in that lonely, sterile room with me, making me feel so much less alone.  

a couple of weeks ago while i was at work, we were talking about how blogging seems like it's going out of style.  like it's sooooo 2007-2011. suddenly pinterest emerged, and blogging became the red-headed stepchild, the neglected one, the less exciting, less thrilling, less crafty one.  

not a good move for me, career-wise, seeing that i was hired as their company blogger.  hmm. 

but where did we go, friends?  is it because i've been seriously lazy about commenting lately?  if you think no one is listening, are you quitting?  are you too busy?  or is blogging really dead?  or just for those few left who have become/are trying to become successful through theirs?  

well, to that i say NAY.  

in my best kirsten-dunst-acting-like-marie-antoinette voice, 

to that i say


so how about this.  

i'll blog if you will.