MY BOOK!!!!!!

 

Blessed in Weakness

―How a Mother Found Hope, Healing and Divine Purpose Raising a Disabled Child 

As the mother of a disabled child, I've been the recipient of many gifts. Some of the greatest of these gifts have been spiritual. My mind has been enlightened with increased understanding and my soul has been expanded with greater faith, as I've searched to understand God's purpose for my son, David's, disability. Blessed in Weakness  is a compilation of the spiritual experiences I've had and the truths I've learned raising a disabled child.

Although there are still many things I do not know or understand, I can say with surety: 

• I know disability is a part of God's plan, and this is a plan of happiness.
• I know each disabled person has a unique mission to fulfill on earth and is capable of growth.
• I know Christ overcame death and we will all be resurrected. I know David will be resurrected with a body free of disability and will live with God again. 
• I know my Savior, Jesus Christ, has borne my griefs and carried my sorrows. He stands with open arms waiting to comfort me. His love and grace give me the strength to carry on. 
• I know Jesus loves David and is aware of his needs. Christ has suffered the pains of David's disability and knows how to succor him.
• Above all, I know David's body houses a strong, mature spirit. He is among the noblest of spirits--clean and pure, righteous and obedient. 

I've tried to imagine the scene in the pre-earth life when I was called to be David's mother. How honored and humbled I must have felt knowing I'd be given this special calling. 

It is a privilege.

Foreword by Carmen B. Pingree

Eugénie C. Stoll

"Uplifting and edifying"

"Unique and important"

"Outstanding and perceptive"

"This inspiring story epitomizes the paradoxes of raising a severely disabled child: unanswered questions and remarkable insights, painful rejections and startling acts of service, agonizing losses and compensatory blessings, unfulfilled dreams and unexpected miracles. Parents, neighbors, teachers and strangers will be affirmed in hope, compassion and the meaning of life and love."

WENDY ULRICH, PhD

 Available at AMAZON.COM in paperback and ebook

https://www.amazon.com/s?k=blessed+in+weakness+book&crid=CAY19QDH8C0V&sprefix=blessed+in+weakness+book%2Caps%2C109&ref=nb_sb_noss

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.

The Kindness of Others

    It was Sunday afternoon. We were in our usual spot. While the rest of the congregation enjoyed sacrament service from the chapel, we occupied the foyer. Emma ran around gleefully, enjoying the independence that comes with being two. David was strapped into his blue Graco stroller. The one we used for him when he was a toddler, now a few sizes too small. His lanky five-year-old legs sprawled past the foot rest and touched the floor. Although a tight fit, he was contained. Our only assurance he wouldn’t make a mad dash from the building.

            He was chewing a small, white towel. The one we used to manage his chewing compulsion and keep his Sunday shirt from developing holes.

            Jeff, an especially kind man in our ward, passed by. After greeting Rob and I, he hunched down in front of the stroller and attempted to connect with David. Immune to his attempts, David stared away.

    Jeff then picked up the dry end of the towel hanging from David’s mouth, and put it in his own mouth. David’s eyes widened with delight. Jeff now had his full attention.

    Together they played a game of tug-of-war, each clenching a corner of the towel between their teeth.

            Rob and I smiled at each other and then we laughed as the game ended. David took the well-soaked, soggy corner from his own mouth and held it up to Jeff’s—rewarding him with his favorite oral companion.

    Not only had Jeff taken the time to connect with David, but he’d won his heart. 
    I loved Jeff for loving David.

    When people are kind to David I feel Heavenly Father’s love for me. It’s easy for others to look away and pretend they don’t notice him. Some refrain from interacting with him out of feeling awkward or uncomfortable. They politely keep their distance out of not wanting to interfere or give offense.

    Then there are those who amaze me. They go out of their way to interact with my son, even when he doesn’t respond or tries to avoid them.

    I feel God’s love through their kind actions.

Ignorance Versus Understanding

         On the last day of vacation we decided to go back to the San Diego Zoo. David could ride the bus and cable car and the girls could play on the playground (they just weren't that into seeing animals).

         As Dave and I exited from the cable car, the Simex theatre caught my attention. It was playing segments from the Ice Age movie and promised to provide a full 4-D experience, complete with snow blowing in your face, seats that bump and the smell of exotic fruit. David loves sensory stimulation and I wanted to give him this thrilling experience. So I agreed to pay $10.00 for a 15 minute show.
          David waited patiently in line and eagerly took his seat in the theatre, right in the center of the last row. We were ready for the adventure to begin. And then I heard it, that sucking sound David makes when he is excited. I froze in my seat. This was going to be a really long 15 minutes.
          If only they'd get the movie started.
          Please let it be a really loud show.
          The doors slammed shut and everyone was seated. We were trapped in the dark with nothing to listen to but the sound of David furiously sucking the saliva through his teeth.
          Why weren't they starting the movie yet?
          I looked around. Remarkably no one was turning around or staring or giving us odd looks. Not even the man seated directly next to David. I immediately felt grateful for their silent tolerance.
         But then a young lady two seats away leaned over and tugged on my arm. "Make him stop! Make him stop!" she ordered.
         I knew I couldn't make David stop, but I tried to anyway. He responded with a loud protest. So I left him alone. The sucking sound was better than a tantrum.
         I decided to apologize to the young woman afterwards. But it no use, she was angry and didn't understand.
         I walked away. Slowly.Held back by the wall of shame that enveloped me.
         I never should have gone into that movie theatre. I usually try to be sensitive to the people around me, but this time I blew it. I hadn't even considered how David's sucking sounds might be a problem.
         I pulled my hat down a little lower and put my sunglasses on to hide the tears welling up in my eyes.
         I entered that theatre feeling somewhat OK about my place in the world as David's mother. I came out feeling very different.
         Various people walked past me. I felt so separate from them now.
         They were normal.
         They belonged there.
         Dave and I didn't.
         When I met up with Rob at the playground I told him about my experience. I brought it up again on our long ride home. I couldn't let it go. The more I talked about it, the more I hurt.
         Too bad it had to happen on the last day. It put a damper on the whole trip. Maybe if I thought bad thoughts about that lady, I'd feel better.
         After discussing it for some time Rob helped me recognize the many positive experiences we'd had on our vacation. We'd been the recipients of many unexpected acts of kindness as people went out of their way to accommodate my family.
         Like the honest people who turned in Rob's wallet when he lost it at Seaworld. Or the family who let us go in front of them in line to see the Giant Panda's. Or the staff at The Coronado Club Room and Boathouse. In an effort to enjoy the most pristine beach we found ourselves camped out in front of this private, members-only facility.
        The clubhouse building had a ceiling fan and David is obsessed with ceiling fans. Forget the sand and the water, the only place he wanted to be was near that fan. I dragged him away kicking and screaming and tried to interest him in the beach. But that didn't work, so I started packing up our things thinking we might have to leave. When I looked up I saw one of the staff members from the boathouse approaching me.
         "It's OK if your son wants to come inside our office and play with the ceiling fan. I don't want you to have to leave," she said.
          I hesitated, but she insisted, "It's OK, we're fine with it."
          She sat and talked to me as David ran in and out of the office, turning the fan on and off. She asked a lot of questions about autism and at one point reassured me, "You came to the right beach."
          I will never forget her kindness.
          In the course of my conversation with Rob I noticed there'd been more positive experiences on our vacation than negative one's. There'd only been one negative incident. So why was I still hurting?
          I realized I had a choice to make.
          I could choose to focus on that one hurtful experience and let it fester or I could choose to celebrate the many positive acts of kindness we'd received.
          I could choose bitterness and anger or I could choose gratitude and joy.
          The choice was mine.
          If I want others to be tolerant of my son's awkward and inappropriate behaviors then I need to be tolerant of those whose limited experiences keep them from understanding.   
          Ten years ago I was that young lady in the theatre who didn't understand.
          As newly weds Rob and I flew to South Africa so I could introduce him to my family and my country. On the flight from America to Europe two young children screamed a lot for a long time when the rest of the plane was trying to sleep.
          I remember turning around and looking at the parents of those young children. They both stared forward with a glazed look in their eyes. What incensed me most is that those parents just sat there looking frazzled, not doing a thing to make those children stop!
         While I restrained myself from expressing my contempt, I felt it. My limited understanding of the world told me that it is a parent's responsibility to control a child's behavior. And if you aren't able to do this, you aren't a good parent.
         How the times have changed.
         I now have children of my own.
         I now understand there are times when you just can't make a child stop. And that doesn't make you a bad parent.
         That young woman in the theatre didn't have any children, let alone an autistic one. How could she possibly understand the challenge I was facing?

A Family That Pulls Together

 It was the 4th of July and we dared to be in a parade with David.

 

 

Actually we did it for the girls.

 

          The thought of being the center of so much attention made them giddy. So I spruced up the rusty old wagon we picked up at a yard sale and coordinated our patriotic outfits.

          The hardest part was waiting around for things to get started. David doesn't do waiting--it's strictly against the autistic code. Instead he headed for the church building nearby and tried to open the locked doors. I think he was hoping to find an elevator inside. The girls didn't do so well either, they kept knocking each other with their flags.
          Finally things started to move and we caught up with Rob and Dave half-way down the block. I managed to coax David into the wagon without too much of a fight and he ended up being the only one who rode in it. Skye, my strong-willed 2-year-old, insisted on helping her dad pull it along.
          We got a lot of cheers, I guess spectators couldn't resist the sight of a 2-year-old wearing bright red Elmo Croc's pulling her 8-year-old brother along, or maybe they realized he was disabled. Either way we won the crowd. Emma walked alongside Rob waving a flag and I followed in the rear, ready to catch Dave if he decided to jump out.
          At the end of the day as I sat in David's room waiting for him to fall asleep, I reflected back on the day's activities. The image of Skye pulling the wagon in the parade lingered in my head and with it came the realization of its symbolism: 2-year-old Skye helping to pull her 8-year-old disabled brother along depicts how our whole family shares the load of caring for David. The bulk of this burden may fall on Rob and I, but Emma and Skye feel its weight too. 
          They share in our feelings of grief and heartache and are impacted by the endless adjustments and sacrifices that need to be made. I worry the girls don't get enough of my time and attention and feel guilty when they miss out on activities because of Dave. But I feel just as guilty when we're off doing something fun together without David. When he's not with us, our family feels incomplete and I miss him. It's a juggling act, with no sense of balance.
           Five-year-old Emma has taken on the role of being a big sister to Dave. She's quick to chase after him when he runs away, helps carry his backpack to school and asks if she can help feed him. Even Skye has stepped into a care taker role. She loves to bring Dave his shoes in the morning and hurries to find a diaper when I change him.
          I worry about what "issues" Emma and Skye will have as a result of having a disabled brother, but at the same time I know our family situation provides an opportunity for them to develop special gifts. Like empathy, compassion, acceptance, tolerance, and above all love!     
         When Emma came home from kindergarten and asked, "Guess who my boyfriend is?" I cringed. I wasn't ready for her to take this developmental step. But then she quickly responded, "David, I'm going to marry him."
          Her sweet innocence warmed my heart. I wanted to hug her so hard for loving and accepting her brother.
          I've tried to explain David's differences to Emma. She has a tender heart and gets teary-eyed when I talk about how sick he was as a baby. Until recently she still believed David was going to grow up and be "normal."
          "Let's buy him a really big prize when he learns to talk," she declared. It was with a heavy heart that I decided it was time to explain he's never going to learn to talk. Through her tears she questioned me and desperately tried to come up with reasons why I was wrong. She wasn't about to give up on this dream without a fight.
          On another occasion she came running to find me. Jumping up and down she announced with glee, "David's playing with me, he likes me now! He likes me now!"
         Does this mean she thought he didn't like her before?
          That would be so sad. I fumbled around my brain to find a way to explain David's social avoidance to Emma. I wanted to make up for all the time she'd thought he didn't like her.
          I added this concern to my growing list of worries.
          Its a long list.
          But even with all of my angst, I continue to cling to the belief that this experience is making my family better, stronger and more loving.
         David may be the first-born, but he has two "older" sisters looking out for him, helping to pull our family along.

A Question

"A Question

A voice said, Look me in the stars

And tell me truly, men of earth,

If all the soul-and-body scars

Were not too much to pay for birth?"

(Robert Frost, 1874-1963)



Weak Body, Strong Spirit

Real strength doesn't come from our physical bodies, it comes from our spirits. Even though our bodies may be physically weak, they house strong spirits.

Before David's birth, I wanted to know who he was. One night as I lay on my bed quietly pondering, I received some distinct spiritual impressions. I sensed he was a strong, determined, warrior-like spirit, similar to Teancum of old. I was told even though he'd arrive in a small, fragile body, he was a strong, mature spirit. I marveled at this information and imagined him one day serving a mission as a great spiritual warrior.

And then the awful complications of his birth. . .

. . . a stroke and oxygen deprivation.

When I saw my baby for the first time he was attached to life-support machines in the Newborn Intensive Care Unit(NICU). (I'd just been released from Intensive Care myself, and was now allowed to visit my baby.) He lay peacefully nestled amidst a maze of tubes and wires. At the center of all this medical equipment was the most perfect angel I'd ever seen.

The lights in the NICU had been lowered. Within this soft twilight, David's body shone. He was filled with light and radiated a warm glow. His eyes were closed, and he had a fine brush of light brown hair. Immediately I noticed his little upturned chin. It was Rob's chin, complimented by a cute button nose. I marveled at how long his toes were. So unlike my short, stubby ones. And each slender finger, so perfectly formed.

At 7.1 pounds and 20 inches he looked too big to have fitted inside me.

Could he really be mine?

Now that I'd seen him the thought of letting him go was even more unbearable. In all my attempts to imagine his face, I could not have conjured up a masterpiece so magnificent as the person who lay before me. My heart swelled. Seized with joy I felt the power of maternal love flood my being. Pure and strong.

My arms ached to hold him and my bosom longed to soak up the warmth of his being. But he belonged to all those machines and medical attendants.

I remembered the impressions I'd received prior to his birth--that he was a strong, determined, warrior-like spirit. I'd imagined him fighting great spiritual battles. But now I realized he was engaged in a physical battle as he fought for his life. I reminded myself even though his body was weak and fragile, it housed a strong, mature spirit. I determined to put my faith in this strength and prayed his spirit would triumph and remain with us in mortality.

Thought for the month

“Some of those who have required much waiting upon in this life may be waited upon in the next world—but for the highest of reasons.”

(Neal A. Maxwell, “A More Determined Discipleship,” Ensign, Feb. 1979, 79‒73)

My David

David is a beautiful child, with deep blue eyes, sun-streaked hair and a smile that infuses delight. He loves to run and jump and climb. He lives life with an intensity that is contagious, abounding in exhilaration and enthusiasm. I can't help but revel in his joy.

 

But when I'm around his peers, a relentless pain starts gnawing in my gut. A harsh reminder he's not the same.

 

I marvel at other kids. They are so advanced and skilled. Speaking in complex sentences they engage in elaborate games of their own imaging. Toilet-training and self-feeding are no longer issues. They walk alongside the shopping cart at the store and stay on the playground at the park. Birthdays and Christmas are days of celebration--they love receiving gifts and know how to open them. Their heads turn when you call their name, and they look into your eyes when you speak to them . . . 

 

 

. . . they call it AUTISM.

 

 

 

 www.designbyravenmuse.com/autism_graphics.htm