Tuesday, January 24, 2012

Truly Blessed

I love the expression on Ammon's face in this picture.
This year's Christmas Holiday season was my favorite on record.
I felt so much love and gratitude for the Savior.
I felt pure JOY just being surrounded by my family.

We enjoyed reading Christmas stories by the fire, singing carols at an elderly home, iceskating,taking treats around to neighbors and friends. Andy and I were able to sneak up to Salt Lake City and see the First Presidency message live at the Conference Center, thanks to my wonderful parents who were literally pushing us out the door. Zach and I went to see The Savior of the World at the Conference Center. Amazing! Life changing experience. 
We had an evening with Julie and Drew making gingerbread houses.
New year's eve playing The Great Dalmuti with the Elder Family.

Over all lots of lying around playing games, being with family and friends and just slowing down!
Lots and lots of basketball at the church and Andy had the entire week off between Christmas and the New Year so I was in heaven.
I was so sad to see it all end. (except for the taking down of the decorations-I was ready to declutter)

As I write this I realize that the joy I was feeling was because of the deep gratitude I felt in my heart for Heavenly Father. 
The day before Thanksgiving Day I drove up to Salt Lake City with only Ammon in the back seat.
We were headed to the Utah Center for Children with Special Needs to meet with Dr. John Opitz.
Dr. Opitz is a geneticist at the University of Utah.
The night before I had barely slept. This was the moment I had been waiting for for nearly 4 years.
This man could possibly have the key to unlock the mystery of Ammon's diagnosis. Does he have FG syndrome(Opitz Keveggia syndrome) or not?Before we walked in I prayed that I would have the courage to face a negative diagnosis. 
We checked in a then were promptly lead to a waiting area in the back of the building. As we were walking I noticed everyone at the nurse's station staring at us and then a very beautiful older woman approached us. With a distinct accent she introduced herself. "You must be Ammon! I am Mrs. Opitz."
 I was taken back by her warmth and the overall opportunity to meet Dr. Opitz's wife!
 We were shown a room and waited for Dr. Opitz. My heart was pounding as I tried to gather my thought and questions. He came in with a student and a big smile. He looks like a scientist!! I told him what an honor it was to meet him. He began asking me specific questions about Ammon as he intently observed him. He didnt waste any time." I believe conclusively that your son has FGS3 syndrome."
 There it was. As he said it I realized that I already knew. He confirmed my feeling by saying "Although mother's usually diagnose their children before doctors do."  

He then taught me about the syndrome. With FGS1 there is mental retardation, but with FGS3 it is the opposite. He said "We have reason to believe that Beethoven and Einstein both had FGS3" and then asked me what I thought of that. Of course I always knew Ammon was brilliant, he is too brillant to talk!!!  
 He told me to be prepared for Ammon to have a  special gift in either music or mathmatics.  
 My heart began to swell as though it would burst right out of my chest.   
 He counseled me to make available to him the piano, and any communication device I could get my hands on. He handed me a copy of the FGFamily alliance newsletter.
 How many doctors do that! Only two in my experience left me feeling hopeful instead of trying to leave an office as fast as I could before a flood of tears gushed out.  
 We talked about other things for about and hour and then left. As we were walking out he patted me on the shoulder and told me to "keep up the good work..you are doing a wonderful job"
 That is about when I fell at his feet in a puddle of tears.J/k
I thanked him back and floated back to the car with Ammon.  
 I buckled Ammon in the car gave him a snack and wept.    
 I can't explain the peace I felt at that moment and still experience. 
After years of searching. We found an answer.
 Knowing what his syndrome is hasn't taken away his challenges or the acute desire I have to communicate with Ammon, but it gave us direction. The reality is many families never know and still move forward.  The following Sunday I was asked to give a talk on Gratitude. As I read and researched I realized more than ever that true happiness comes from being grateful, even and especially for our challenges.We can be grateful to know that someday the blessings we desire will be realized. I am so grateful for the Resurrection of Jesus Christ. Through Him all will be alright. 

Or like Jeffery R. Holland has so beautifully written (I keep this quote on my fridge.)

Some blessings come soon,
some come late, and some don't come until heaven;
but for those who embrace the gospel of Jesus Christ, they come.

P.S. My dear friend Kalo told me (quite out of the blue) that she would like to try and teach Ammon to play the piano! Cross your fingers! I picture it looking something like Anne Sulivan and Helen Keller.:) We are also in the works to get him a communication board at school.










4 comments:

carrie @ the boonie life said...

Awesome! So excited for you and your family and Ammon.

Weston

carrie @ the boonie life said...

Wow. Amazing! That gives me goosebumps, Wendy. Dr. Opitz sounds so wonderful. (I just looked up a picture of him) You didn't tell me about the comparison with Beethoven and Einstein! That is so amazing. Sweet little Ammon and his love for music. So cool that Kalo wants to teach him the piano (and even cooler that it was out of the blue). I love your perspective on gratitude. You are such a great example to me. Love you, Sis! I am so happy for you all!

Unknown said...

I can't read that without getting teary. Nor can I think of Ammon without smiling. He is literally an angel.

Gina said...

What a beautiful and inspiring story, Wendy. I feel so happy for you, and I'm grateful for your testimony. I miss you and your family!