Sunday, April 25, 2010

Lest We Forget

"They shall not grow old as we that are left grow old.
Age shall not weary them nor the years condemn.
At the going down of the sun and in the morning
we will remember them."

Friday, April 23, 2010

Emma Rose

23rd April, our little girl Emma would have been 6-years-old if she had lived.
Emma was a big surprise. We had been trying for 12 years to have another baby. I had finally resolved in my heart that we were only going to have two children. A friend of mine had just found out she was pregnant, and for the first time in recent memory, I didn't get that little twinge in my heart when she announced her pregnancy. The first few weeks were a little rough. Through and ultra-sound we discovered that I was pregnant with not one, but three babies. Unfortunately, a heartbeat was never found on two of the babies and they just gradually faded away each week until they no longer showed on the ultra-sound. Emma continued to grow and thrive. I was a high risk pregnancy - forty-one, diabetic, high blood pressure and overweight. Every week I went to the doctor, tried to do everything they instructed me to the letter. Everything went along great. We chose not to have any of the testing done for birth defects, etc. At 8 1/2 months I went to have a amnio done at the hospital. Emma was measuring over 9lbs, so the doctors thought it might be wise to induce. The amnio was to check her lung development. The day before I had been at the doctors for my usual weekly appointment. I had a non-stress test which was normal. I also had an ultra-sound because Emma had been breech and if she still was, they would schedule me for a C Section the next day. During the non-stress test however, Emma had turned around and was head down.
The next day I woke up feeling extremely nauseated, but thought it was just nerves because I absolutely hate needles. We went to the hospital and there we received the most devastating news of our lives. Our excitement and joy gave way to pain and grief. In a room where the walls were covered with pictures of "miracle" babies - babies that had been operated on while still inside their mother's womb - we were given the news that our little girl had died in the night.
When I was in labor with Emma, it was the most excruciating pain I have ever experienced, and it was probably made worse by the emotional grief and pain I was going through as well. I prayed so hard for a miracle, that the doctors were wrong. But, when the doctor placed her in my arms, I knew that my prayers had not been answered and I had not received my miracle. I thought that I had failed to protect my child and wondered how Heavenly father could give me such a wonderful gift after 12 years of trying to have another baby only to snatch her away at the last minute.
The following months were a bit of a blur, I did the things that were required of me, that I had to do, but there was not any joy, just depression. Finally, when I didn't think I could sink any lower, when I didn't think I could bear the pain any longer, I finally prayed to Heavenly Father and asked for the peace that I so desperately needed.
Every night I had been having the same dream over and over. I was sitting on the bed playing with Emma. There was a loud noise, I looked up and when I looked back down, she was gone. I could hear her crying and crying but couldn't find her. Every night it was the same and during the dream i would be saying to myself, "Don't look away, don't look away!" But I always did. One night, shortly after my talk with Heavenly Father, I had a different dream. Our family was walking along a cow path on a hillside. Coming towards us was a man, as he came closer I could see that it was the Savior. As He came closer still, I could see that He was carrying something in his arms. The closer He came, I could see that he was carrying our little girl. Finally our paths met. The Savior placed Emma in my arms. My arms stopped aching, my heart stopped hurting. I have never felt such joy and peace. In one brief moment the Savior’s hand and mine brushed. I had read many times in the scriptures about the women who knew that if she just touched the hem of the Savior’s clothing, she would be healed. That is how I felt. I knew, and know that Jesus Christ and Heavenly Father love me. I felt that love. I knew in that instant that I was not being punished. I also knew that I had been wrong. I had received a miracle. That miracle was the Savior’s atonement. He suffered in the garden of Gethsemane for me. He suffered pain so great that he bled from His pores. He died on the cross for me. I knew in that instant that I would once again hold my little girl, that I would get to raise her and we would all be an eternal family.
I still miss her and cry for her. I still visit her grave and place pink roses there. But the promise of having my little girl with me again makes the pain bearable and gives hope.
We have this picture hanging in our living room. Jim bought it for me the week after Emma died. It is by Greg Olsen and is called, "Forever and Ever."
Our family calls it "Emma's picture."
A friend wrote us a poem shortly after Emma died.
After so many years of waiting patiently,
There was to be a new member of your family.
Though the thought of having her was at first a big surprise,
Over time you imagined her, ten fingers, ten toes, two beautiful eyes.
The perfect little baby, the final finishing touch,
To be a part of this family that had waited long enough.
The things you gathered for her were selected with love and care,
The crib, the bedding, her clothes, and the bows for her hair.
Yet, through a simple twist of fate and touch of the Master's hand,
Sometimes the gifts He has for us are not what we have planned.
You see now the roles have been reversed, she's gone back to Him above,
To look down and watch over you, with her eternal love.
R. Eaton

Tuesday, April 20, 2010

Autistic Like Behavior

Found this trailer for a movie today.  It caught my attention because when I first went to Samuel's pediatrician with our concerns over him, the words I used were, "He is displaying some autistic like behaviors."  I would be very interested to see this movie in its entirety.

Monday, April 12, 2010

For this Child

There is a new show on TV called "Parenthood".  It had various story lines going on, but one involved parents receiving the diagnosis of Asphergers  for their son.  The parents were devastated.  I have actually been thinking about this lately - the word devastated that is.   The word devastated is used a lot when it comes to parents and families receiving a diagnosis of autism.  I am sitting here thinking back to when we received Samuel's formal diagnosis.  I was very emotional and had a few meltdowns in the week following, but I don't think I was ever devastated. 
I had a sense of relief because we finally had a name to put to Samuel's behaviors.  Relief because we now could take steps forward in finding the right course of action to help Samuel.  In the past I have received news that has devastated me, crushed me.  This didn't.  I am not trying to make light of others emotions and feelings.  This is me and how I felt.  Sitting in a hospital room and receiving the news that the baby you were supposed to be delivering that day had died during the night is the most devastating news I have ever received.

I have days when I am overwhelmed by trying to do all that needs to be done to help Samuel.  
Constant, constant, constant.
Repetitive, repetitive, repetitive.
All for one small glimmer of eye contact.
One small glimmer when he speaks a sentence using his own words.
One small glimmer when little arms are thrown around my neck accompanied with those longed for words, "I lub you Mummy."

A Few Joys of Raising Autistic Children
These thoughts were shared at a workshop about autism at a BYU woman's conference - a few of my own have been thrown in
We get to enjoy our favorite movie line quotes  again and again and again.
Peer pressure—what’s that?
If the definition of humor is absurd and unexpected responses—we have A LOT of good jokes!
I actually prefer all my measuring cups, soda cans and spoons, lined up end to end across the kitchen floor.
Fresh perspectives on parenting, relationships, the gospel, and the joys of the alphabet.
The letter T is actually a member of our family.
I may have been compelled to learn it, but what better attributes than patience and compassion.
I know more about parenting than all the other parents I know combined; because they all gave me their advice.
Living with a developmental delay is like watching child development with time-lapse photography—you can actually see the Lord’s hand in it.
Chasing a totally unaware child the entire length of Disney World and back burns roughly 15,000 calories—that’s like 25 doughnuts!
When my child is displaying some echolalia, I just say out loud, “Mum, you are beautiful!”
They say autism is complicated, but with a child who has no social awareness, “What you see is what you get”—could these children be more simplistic?
Children of few words rarely talk back.
It is the lessons we learn from teaching our “outside-of-the box” children, that help us to be better teachers of all children.
Could it be that my autistic child came here to lead me to the hand of God?
If flowers grow best when there is both sun and rain, we must be living in a lush rain forest!
Sometimes it’s nice to be loved by someone who has never passed a judgment.
Are there references to autism in the Bible? Oh, yes!--those who had no guile.
When you live with someone who interprets everything literally, “cashews” become something cows wear on their feet, and “notions” are people who have no shins.

I have this picture of Samuel sitting on the breakfast bar.
The frame has the caption, 
"For this child I prayed."
Samuel 1:27

The scriptural reference is about Hannah, who prays for a son, and vows to give him to the Lord—Eli the priest blesses her—Samuel is born—Hannah loans him to the Lord.
"Wherefore it came to pass, when the time was come about after Hannah had conceived, that she bare a son, and called his name Samuel, saying, Because I have asked him of the Lord." 

 When we walked through the front door with Samuel, coming home from the hospital after he was born, I cried.  Actually, I think sobbed would be a better word.  I sobbed and sobbed.  I felt it was coming from deep within my heart.  I was so relieved to be bringing my baby home, to have him in my arms.  Not a day goes by that I am not grateful for the trust that has been placed in me to raise this special little boy.  He needs me to be his voice.

Six years ago when I was trying to overcome the grief of losing our little girl, Jim counseled me to find something I was passionate about. I think I may have informed him, rather testily I think, that I was passionate about my children, so give me another suggestion please. So, here I am 6 years later fighting passionately for one of my children. This beautiful little boy needs me to be his voice.  I am forever grateful for those who help me and speak for Samuel.
 One voice can be powerful, but I am picturing the Tabernacle Choir!
That is what is needed.