Divine Comfort

When I feel lonely, grief-stricken and depressed divine comfort is always available.

While still in the hospital recovering from the trauma of David's birth I was in need of such comfort. I could tell my body was starting to heal from the unexpected complications of his birth when I began to cry uncontrollably. As my physical pain decreased, my emotional pain increased. With my body no longer struggling for survival, I started to feel the devastating grief of my situation.

David was born at 2:48 a.m. on Friday. On Sunday morning the nurse asked, "Would you like to attend the sacrament service held in the hospital (we were in LDS Hospital) or would you prefer the sacrament be brought to you room?"

Rob and his mom accompanied me to the chapel. Unsure if my newborn would live or die, I was crying even before the service began.

When offered the sacrament I shook my head and pointed to the tube protruding from my nose. A nasal-gastric tube had been inserted through my nose, down my throat and into my stomach. It was designed to suck air from my stomach. I'd been given strict orders not to eat or drink anything.

The old man holding the sacrament tray kindly suggested, "Take a piece of bread and touch it to your lips and do the same with the cup of water. This is what we've done for other patients. I believe it'll have the same effect."

So I took a piece of bread and touched it to my lips and did the same with the cup of water. I was grateful not to be excluded from this ordinance.

I cried even more when I listened to the talks. They were on the Atonement. A young sister spoke about the Savior's ability to provide comfort and peace when we experience sorrow and heartache. As she spoke the Spirit warmed my heart and soothed my soul. I received a witness that what she was saying was true.

I realized my baby was grateful to me for providing him with physical life. Jesus Christ provided us with spiritual life and I provided David with physical life. With this realization came feelings of peace and comfort--the Savior knew my pain and provided the solace I sought. In the midst of deep despair and uncertainty Christ's love reassured and strengthened me.

"Though we (may) . . . face . . . all manner of afflictions, our caring, loving Savior will always be there for us. He has promised: 'I will not leave you comfortless: I will come to you.'" (Rasband, Ronald, A, "Special Lessons," Ensign, May 2012).

Sweetest Spirits

"But we are reminded that a perfect body is not required to achieve one's divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies. Great spiritual strength is often developed by people with physical challenges, precisely because they are so challenged."

(Nelson, Russell, M. "Thanks Be to God," Ensign, May 2012)

I Can't Get Enough of Your Smile

I can't get enough of your smile
Or the dancing twinkle in your eyes

It's the unexpected magic of this sighting that thrills me the most

Like bright sunlight on an icy day

It warms my being and lights my world

Telling me you're OK

With no words of your own to make this expression

I'll take your smile 

And with it the peace of knowing you've found joy and satisfaction 

That life is good

That something pleases you

Or you're just happy to see me.

Adversity

"It is your reaction to adversity, not the adversity itself, that determines how your life's story will develop."

(Dieter F. Uchtdorf, "Your Happily Ever After", Ensign, May 2010)
 

For My Silent Brothers and Sisters

talking does one good
shouting is animal
how come i can't give it up
and just say everything in simple words
now i am going to write a song about the joy of speaking
a song for mute autistics to sing in institutions and madhouses
nails in forked branches are the instuments
i am singing the song from deep down in hell i am calling
out to all the silent people in this world
make this song your song
thaw out the icy walls
make sure you arent thrown out
we will be a new generation of mute people
a whole crowd of us singing new songs
songs such as speaking people have never heard
of all the poets i dont know of one who was mute 
so we will be the first
and people wont be able to shut their ears to our singing
im writing for my silent sisters
for my silent brothers
we want people to hear us and give us somewhere
we can live among you
live a life in this society

September 21, 1992

Sellin, Birger. (1995). I Don't Want To Be Inside Me Anymore: Messages From An Autistic Mind. New  York: Basic Books.

Noble Spirit

David's body has grown bigger and stronger, but his mind is still behind, trapped inside the prison of autism. His ability to communicate is severely limited and his functioning is impaired by odd behaviors, emotional outbursts and limited understanding. Even so, his disabled body is home to a mature, noble spirit. A spirit so valiant he doesn't need the saving ordinances because his exaltation is already secure.

The Spirit taught me this truth while I was doing an endowment session in the Salt Lake Temple.

As I sat in the endowment room waiting to go through the veil, I had an interesting impression. I imagined Emma, my second child, was all grown up and sat beside me (Skye had not been born yet). I rejoiced in this image and looked forward to the day when Emma would join me in the temple. But then I felt a slight sense of concern.

Where was my David?

Why wouldn't he be a part of this impression?

I closed my eyes hoping to feel something of his presence. I opened them and looked around.

Why wouldn't he be in the endowment room with us?

Was this just one more experience he couldn't be a part of?

Slowly it dawned on me he didn't need to be there.

He was on the other side of the veil.

Already in the presence of God.

Waiting for us to join him.

Importance of Nature

 

" . . . to us people with special needs, nature is as important as our own lives. The reason is that when we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged. However often we're ignored and pushed away by other people, nature will always give us a good, big hug, here inside our hearts."

Higashida, Naoki. (2013). The Reason I Jump:The Innner Voice of a Thirteen-Year-Old Boy With Autism. New York:Random House.

Mormon Litz Blitz Semi-finalist

I am a semi-finalist in the Mormon Litz Blitz 2014 !!!!!!!!!!!!!!!

 

http://blog.mormonartist.net/2014/06/2014-mormon-lit-blitz-longlist/

 

Because You're Mine

BECAUSE YOU'RE MINE

Because you're mine
I am loved
And needed

I have someone to hug 
And hold onto

A snuggle-buddy on long, restless nights

Because you're mine
I have a million more reasons to smile

And laugh

And cry

My heart is so much bigger than it used to be

Because you're mine
I care less for the things of this world

And more things that really matter

Like kindness
Faith
And family

Because you're mine
My life has greater meaning and increased purpose

You've elevated my priorities 

And changed my definition of success

Because you're mine
I see the humanity in others more

You attract only those with the warmest of hearts 

And I am blessed by their overwhelming kindness

Because you're mine
I have more empathy

I notice the hardships of others more

And have a better sense of their sorrows

Because you wait for me
To love

Guide

Help

And protect you

I must be there

 And I must be more

More patient
Tolerant
And flexible

More loving
Kind
And gentle

More forgiving

More long-suffering

Because you're mine
I am so much more than I ever thought I could be

Special Brother

 

"I think that aside from my parents, this special brother did more during my childhood to shape my outlook on life than anyone else."

(Jensen, M. K. "Those who are Different," Ensign, Aug 2010)

A Good Enough Mother

       We gathered in the hospital conference room. Taking our seats around the large table in dutiful silence. 
       Before us a heap of baby blankets presented a colorful array. To the side an elegant buffet lunch beckoned.

       I was both pleased and anxious to be there. I wondered how much I would say. 

       What would others say?  

       A soft, fuzzy blanket captured my attention. It had cars against a pale blue background.

       This was Parent Support Group. We were strangers connected by a deep thread of pain. Beyond the doors of that large room, down the hallway and a little to the right, lay our precious newborns under the watch of Intensive Care.

       It was a simple task, yet I marveled at the ease with which the other parents carried it out: Introduce ourselves and explain why our baby was in Intensive Care.

       They spoke so easily. 

       So freely. 

       So uninhibited by heart-breaking emotion. 

       I managed to say my name but was less successful when it came to declaring my baby’s serious medical condition. The admission of my newborn’s critical state triggered an unbearable pang of guilt. An emotion which wrapped itself around my vocal chords in a choking grasp. 

       To be so overcome with emotion was embarrassing. 

       Why did I break down when everyone else remained so calm and put together?

       I felt like my body had let my baby down. 

       I felt guilty. 

       It’d been my responsibility to bring that baby safely into the world. 
       I’d failed him in this duty.
       As uncomfortable as that pregnancy was, I just wanted to put him back inside of me. Back in the place where he was healthy and strong. Safe and protected. Shielded from the onslaught of complications brought about by his traumatic birth.

       In my logical mind I knew the medical emergency wasn’t my fault. I had had no control over what happened and I couldn’t blame myself or my body. 

       I knew this at a cognitive level. But at a much deeper level, a place not bound by rational thought, I felt responsible. 

       Worst of all I didn’t know how to make this feeling go away.

       I was disappointed the intensity of my emotion kept me from sharing with the group. So I sat there and listened and ate my lunch. 

       When it was time to go, I walked out silently with a fuzzy, blue blanket tucked under my arm.  

       With the passing of time and lots of healing I have since resolved this irrational guilt. But it has only given way to other forms of guilt.         

       The guilt I feel as a mother has many faces.

       Every day brings new opportunities for feeling inadequate. No matter how much I do or how hard I try, there is always more I could have done. And something I should have done differently.
       I simply don't have enough time, energy or money to do it all the way I want.  
       When David came home from the hospital I determined I was going to be the perfect mother for him. I was going to give my baby whatever he needed. Nothing would stand in my way. 
       Nothing would be too much.
       Back then I couldn't have imagined just how daunting this task would be.
       How unprepared I was. 
       How exasperated and inadequate I'd feel.   

       When studying Developmental Psychology I came across a concept that stuck with me. Donald Winnicott used the term “good enough mother” to describe a standard of care favorable to a baby’s development. According to his theory, in order for a baby to develop appropriately, a “good enough mother” is required and not a perfect mother. 
       I like this concept because a mother isn’t held to a standard of perfection. Rather, she is held to a standard of being good enough.

       I try to remember this when I feel inadequate.
       I don't have to be perfect.
       Just good enough.

       Elder Jeffrey R. Holland teaches, “If you try your best to be the best parent you can be, you will have done all that a human being can do and all that God expects of you” ( “Because She Is a Mother,” Ensign, May 1997, 35).

       This means all I have to do is my best.

       And that's OK.

       Maybe not perfect.
       But good enough.

HAVE A GOOD MOTHER'S DAY

Easter

" . . . the Savior makes all things right. No injustice in mortality is permanent, even death, for He restores life again. No injury, disability, betrayal, or abuse goes uncompensated in the end because of His ultimate justice and mercy."

(D. Todd Christofferson, April 2014, "The Resurrection of Jesus Christ.")

Happy Easter

Accused of Hating My Son

        “. . . Open your eyes! Not everyone is a bigot like you. I now just feel sorry for your son. I suggest you find another group with other mothers who are as hateful towards autism and their own children as you are. There are plenty of people like you, the world is full of hateful people.
        . . . It is blogs like yours that encourage negativity towards autism and autistics.
        . . . If you stopped hating your child that would change your reality.
        . . . You simply do not accept your son for who he is. I think it hurts because you feel sorry for yourself. . . I feel sorry for him, and I feel sorry that he has a mother with your attitude. If you don’t like being called a bigot and someone who hates their son, stop being that person.
        . . . Try caring a little more about your son, and a little less about your own feelings.
        . . . I can't stop you hating autism and your son. It is like trying to convince a member of the KKK to love black people."

        These comments were made in response to my blog post, I Hurt for Him. In this post I expressed the grief I feel for my son's losses. 
        Quickly this became my most popular blog post yet. I received many heart-warming expressions of love and empathy. Yet amidst all of this support I also received the hurtful comments above. 
        They were made by a mental health counselor and father of an autistic child who is the founder of a closed online support group for parents of autistic children. A site that promises to provide a safe environment for its members and aims to make the world of autism more positive by helping its members "sail" towards acceptance.
        The reason for this man's attack was that my expression of grief (I Hurt for Him) is perpetuating negativity towards autism.
        To be concerned about negativity is one thing, but to accuse a grieving mother of hating her child?
        That's too extreme. 
        Not just extreme, it's cruel and unfair. And does not make the world more positive.
        It's also NOT TRUE.
        Grief and hatred are not the same emotion. 
        I grieve for my son's losses because I LOVE him and want the best possible life for him. I'm still trying to figure out how that became an expression of hatred.
        Yes, grief may be a negative emotion, but the truth is we are all going to have negative feelings. Raising a disabled child is not a one-dimensional emotional experience. My relationship with my son spans the full emotional spectrum from my greatest joy to my deepest sorrow. There are times when I feel both joy and sadness at the same time.   

        Sometimes we have to go through the negative feelings in order to get to the more positive ones. Acceptance is achieved by first grieving for that which was lost—a journey we all take at different speeds.
        But even when we've arrived at acceptance I'm not convinced the pain of loss is ever fully resolved. Because there are still unexpected triggers that can take us back to feeling sad. Somewhere deep within our hearts we carry the memory of our loss. 
        You don't help grieving parents move towards increased positivity and acceptance by condemning their grief or calling it hateful.
        There is a better way.

        I know this because I’ve experienced it.

        Kindness and empathy have always been the hallmark of my interactions with fellow parents of the autistic community. I’ve received unexpected gestures of love and support from total strangers who’ve embraced me as one of the family.

        Kindness is what makes us strong as a community. And it is through kindness that we help lift each other towards increased positivity.
        When we choose to be vulnerable and share our pain with others we open ourselves up to receive the gifts of love, empathy and support as we connect with others.

        But we also take a risk when we share. Because not everyone will be respectful of our pain or even have the capacity to understand it.

        All the same I still believe it's a risk worth taking.

        Because I believe in the goodness and kindness of others.

"Why do we hesitate to share our pain? Do we build walls to protect our images rather than building bridges to reach out to one another?" 

(Bergin, M. "It Takes More Than Love," Ensign, Aug. 1990)

Speaking the Same Language Without Speaking At All

         Dave came home from his respite activity crying. I heard him from all the way down the driveway. It was such a sad, distressed cry. The kind of cry that made my gut churn to see the one I love so heart-broken.

         Apparently he'd been crying like that for the past half hour. His respite worker reported he'd had a good, happy day apart from the last half hour. She wasn't able to identify any particular event that had brought on the tears.
         With no words to tell us why he felt so sad all I could do was guess. Maybe he wasn't feeling well. Or he was tired. Or hungry. Or one of his sensory sensitivities had been triggered.
        Not knowing the cause of the upset makes it so much harder to help him.

        After speaking to David's worker, I quickly shepherded him into the bathroom. Anxious to keep to the rigid potty-training schedule and avoid an accident.

        I sat on the edge of the bath tub just in front of the toilet ready to help him get into position. He entered the bathroom a few steps behind me.
        Still crying.
        When he saw me he reached out his arms and said, "Ma, ma" (his version of mama). Then he lunged into my open arms and pressed his head into my shoulder.
        I wrapped my arms around him and rubbed his back as his little body shook with loud sobs.
        My insides turned gooey. Not only did he say my name, but he initiated a hug—at the same time. 

        A rare treasure.
        One that instantly warmed me up. Filling me with love and joy.

        Time stood still as I felt David take comfort from my embrace. Nothing else mattered. The toilet and everything else could wait.
        Crowned by the title of "ma" I was giving my little boy the solace he needed. I didn't feel the fears of inadequacy or the nagging voice of guilt—that somehow I wasn't enough or wasn't capable of comforting my child. At that moment I didn't need to be anything else or anything more. 

        I was enough. All that my son needed me to be. 

        I felt so connected to him. There was no distance or frustration. No guessing or trying to anticipate his needs. We were on the same page.
        Finally speaking the same language.
        Without speaking at all.

Our Capacity to Love

"Our joy now and forever is inextricably tied to our capacity to love."

(Groberg, John, H. "The Power of God's Love," Ensign, Oct 2004)

Making a Little Boy Smile

 

      Every week Rob (World's Most Amazing Dad) takes David to the downtown mall. Not because David likes to shop. But to let David ride all the elevators and escalators he can stand. 
      Along with elevators and escalators David is crazy about ceiling fans. He is enthralled with watching them spin around at top speed. He quickly memorizes which stores have them.

      Rocky Mountain Chocolate Factory is one of these stores. It has a ceiling fan! 
      However, depending on the weather and time of day the fan isn't always turned on. As part of his mall ritual David always runs inside this store and looks up to see if the fan is spinning.

      The staff have picked up on David's affinity for fans and know he will be disappointed if the blades aren't spinning. So when he bolts into their store looking upward they kindly turn the fan on for him.

      Not because doing this will improve business for them. They know David isn't going to buy any of their fudge and sometimes in his enthusiasm he may even bump into one of their customers.  
      They do it because they don't have to.
      They do it because they choose to be kind and make a little boy smile. 

THANK YOU ROCKY MOUNTAIN CHOCOLATE FACTORY

YOUR STAFF ROCK!!!!!!!!!!!!

      

All Minds

"All the minds and spirits that God ever sent into the world are susceptible of enlargement."

(Teachings of the Prophet Joseph Smith, sel. Joseph Fielding Smith, Salt Lake City:Deseret Book Co., 1938, p.354)

I Hurt For Him

        There are moments when David's eyes find mine. Filled with earnest intention and pleading they hold onto my gaze. His hands move about as he babbles, "Aa, da, da, da." 
        He's trying to tell me something. 
        But like a bud, unopened, his thoughts remain tightly wrapped within. I long to get inside his head. To know what he's thinking. How much he understands. 
        I want to see the world through his eyes. Know of his pain and fears, his hopes and joy.
        If only I could break through that wall of silence and frustration. 
        Then, maybe, I could really help him.
        I provided him with physical, speech, occupational and feeding therapy--sometimes all in the same week. I consulted with the best and most acclaimed therapists in the valley. We even attended a five week behavioral feeding program in New Jersey. 
        One of the many doctors I saw said, "I admire a mother who is prepared to go to the ends of the earth for her child." 
        "We recognize you're a force to be reckoned with," another doctor said.
        Maybe so.
        But I didn't cure David of autism.              
        I can't fix him. I can't make it better. I can't give him a normal life. 

        I get to stand by, knowing of all he'll never do and all he'll never become. 

        Maybe he's unaware of his many losses, but I'm not. 

        So I hurt for him.

        He'll always depend on others, never knowing the satisfaction of caring for himself, or the freedom of independent living. Confined to his own lonely world he'll never know the joy of marriage or the tenderness of holding his own child. 

        As he struggles to reach out and connect with others, I wonder if he'll ever have a friend.      

        I asked a 70-year-old friend of mine who has a disabled child if the pain ever goes away. She smiled wisely and shook her head, recounting how she now feels sad her 40-year-old son will never get married and have a family of his own. 

        "Each life phase brings a new reason for mourning," she explained.

A Mother's Arms

"Many a mother's arms and heart have ached years on end, giving comfort and relieving the suffering of her special child."

 

(James E. Faust, in "The Works of God," Ensign, Nov 1984)