What 22q11.2 Deletion Syndrome looks like in my home...

Last night on Grey's Anatomy there was a comment made about 22q11.2 Deletion Syndrome.  That is the syndrome that my Cam has. Unfortunately the comment was unkind and not accurate!

Feb 5th episode: 
Two doctors going over a patient's charts. First doctor says "The Mom's been pregnant 3 times, the first two were stillborn."
Second doctor replies "Well, this one will be too. 22q11 deletion ...She should just adopt!"

I want any parent that just found out their child has 22q11.2 DS to see this post and find hope.  Do some children die from complications from the syndrome?  Yes.  Is the syndrome hopeless or a death sentence?  NO!!  

I was told Cam may never speak...you can have full conversations with him.  He tells jokes, knows his letters and sounds, sings songs, and even talks naughty sometimes.  His speech is a little delayed and he is in speech therapy a few times a week...but guess what...so is my son with autism that doesn't have the syndrome.

Cam loves to cuddle and snuggle with me.  He is more loving and kinder than any other child I know.  His heart melts me and I could not live with out him!

Cam is braver than any of my other kids were.  He tries everything his older siblings do and doesn't let his syndrome get in the way of anything.  He is more resilient than any kid I know and has learned to be tough because of all that he has been through.  

He is sweet and compassionate to everyone he meets.  He works hard at everything he does.  He has an amazing spirit and I truly feel blessed to be his mother.  He fills up my soul and makes me happier than I ever thought possible.  I adore everything about him.

There are no guarantees in life...my life is proof of that!  My first husband Jake was a healthy hard working man and died at the age of 29.  I have 6 children and 3 of them have significant needs that make life harder sometimes.  We never know what is just around the corner.  

22q11.2 DS is not hopeless.  Will somethings be hard?  Yes!  Will you celebrate the little things even more?  Absolutely!  Will you grow into a better person raising a special needs child?  I have!  Will you appreciate everyday with your little one?  I do!  Will you get stressed?  For sure!  Will you spend more time in a hospital than other parents?  Maybe.  Will you find more love in your heart than you knew was even possible?  I did.  

My life is infinitely better because of my son with 22q11.2 Deletion Syndrome!

This is the face of 22q11.2 Deletion Syndrome!

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The lessons I've learned from my husband's death, 11 years later...

Sometimes it feels like I have been living the last 11 years for a lifetime and at the same time it amazes me at how fast it really has gone.

Jake was killed in an accident working in a coal mine 11 years ago.  I had 3 small boys and a new pregnancy.  When he died I didn't know if I would survive the night.  I didn't think it was possible to go on living with out him.  The pain of grief is truly indescribable.  It is a real, physical pain that makes it near impossible to even breathe.

Trying to go on living a normal life while in the depths of grief is like trying to run a marathon in waist high mud.  Everything is hard, heavy and at times unbearable.  I look back at the last 11 years and am truly amazed that we are still enduring this trial...but even more amazing we have learned to actually enjoy life, not just endure it.

I am often asked how we have managed to endure this trial and enjoy life.  There are many reasons and factors to this but one I haven't talked a lot about is habits.

When I was younger I developed the habits of "the Sunday school answers".  You know the ones...read your scriptures, say your prayers, go to church, share your testimony, have faith, and rely on the atonement.  Go to any Sunday school class and you will hear those answers to many of the questions. They are even said at times with a slight attitude of annoyance.

Well, I'm here to tell you...that the reason they are the answer to every question...is because they are truly the answer to all of your problems.  My life is a testimony of everyone of those answers.  I believe a huge part of why I have been able to survive and learn from this trial is because of the habits I formed in my youth.

-When Jake died I already had a relationship with my Heavenly Father.  It was hard at first to go to church but I did it because I knew it was the right thing to do...and because I had already formed that habit.

-I was already half way through reading the Book of Mormon again so I continued to read every night...because it was the right thing to do, and because I was already in the habit of reading.  Reading my scripture brought answers to prayers at a time that I was filled with questions and doubts.

-Before Jake died I was in the habit of saying my prayers every night.  This is the one habit that did change.  I couldn't just pray at night anymore.  To this day I walk around with a prayer in my heart continually.  I couldn't count how many prayers I have in a day.  I needed strength for every second I endured in those first days, months and even years.  Now 11 years later I don't need to pray for strength to get through every second, but I do pray for guidance, help, love, and gratitude throughout the day.

-I knew sharing my testimony was important before Jake died and I shared it often.  The importance of being able to share my testimony after he died has been even more important.  It's mentioned in every blessing I'm given and I know it is part of my Heavenly Father's will for me.

-My definition and testimony of faith is the same in some aspects and also very different.  I thought if I had faith and did what was right I would be protected and "blessed".  Nothing bad would ever happen to me if I had faith in Christ.  Now I KNOW that if I have faith in my Heavenly Father and Jesus Christ and rely on them they will carry me through anything bad that happens to me and I will be blessed.  I know that if I submit to His will I will be blessed beyond measure and have a life filled with joy.

-Before Jake died I had used the atonement in my life mainly for a remission of my sins.  After Jake died I learned the true depth of the atonement.  The need to rely on the atonement for my pain and sorrow was crucial to my survival.  To this day when I am having a hard time I remind myself that the atonement isn't a one time thing.  It needs to be used and relied on everyday of our lives.

I have also gained a testimony of miracles.  It is one of my favorite things about my life.  I have endured many trials throughout the last 11 years, but weaved in and out of every trial is small and large miracles.  I know that every trial I am asked to submit to in this life will be filled with miracles beyond measure.  That knowledge and the faith that Heavenly Father will see me through every thing I go through is the only way I don't fear the future.

If you are facing trials and challenges that are seemingly too hard to bear I challenge you to try out the Sunday school answers.  I can testify to you that you will be blessed, you will survive, you will become stronger, and you will even learn to enjoy while you endure.

Anniversaries of Jake's death are always a tender day.  I miss him so much.  I love him and I'm so thankful that our relationship has continued to grow through the veil over these years.  The boys and I still think of him daily and grieve him.  All of our family does.

I am beyond grateful to be married to Curtis.  He is a perfect example of mourning with those that mourn.  I consider this one of my biggest blessings.  He is loving, understanding, and accepting of Jake in our lives.  I love him and am so grateful for the beautiful life we have together.  I am blessed beyond measure.

Pictures from the last 11 years...

Grief doesn't diminish the love and happiness you have now, it just validates the love you lost. -Julie 

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1 year after my blog went viral...

Last year at this time I said a prayer.  I had been having intense feelings that I needed to share my story with people, but I didn't really know how.  I had tried several different things, but nothing much ever materialized.  I prayed about these strong feelings for several years and I was out of ideas so I changed my prayer.  I asked Heavenly Father to show me the next step or to take the intense feelings and desire to share my story away.  I thought: Please let me feel peace that I've done all he wanted me to do.  

Three days later I was talking with a widow on a closed Facebook group.  She had been struggling and so I copied the link to my blog and hoped it would help her see that there is a way to happiness.  The next day I got a sweet email from a widow who had read my blog post.  She was a recently widowed and also pregnant. She expressed how great it was to read my story and realize she wasn't the only pregnant widow.  I felt great that it could help her.  I thought, "hmmm, I guess that is why I had the feeling to share my blog yesterday, so this sweet girl could find some peace."

Later that day Curtis started receiving a couple odd text messages from some out of state friends.  They asked if he knew that my blog was all over the internet.  He called me and told me to check the blogs messages.  I told him that was pointless because it didn't have any messages at all.  After explaining the text he had received  I went home and opened up my blog...it took 15 minutes to even remember how to log in!  When I finally opened it I was shocked and confused to see over 30 messages.  When I opened the stats it said 55,000 views!!! I had maybe 100 views before that and I'm sure they were mostly me;).  When I clicked the refresh button just a few seconds later it jumped over 500 more views and it continued to grow.  In just a couple days the blog was well over 500,000 views. I had thousands of messages come in from all over the world.  Messages of love, sympathy, hope, and thanks.  It was overwhelming and humbling.

This experience has been in many ways life changing. I never set out to be a blogger.  I just knew that I needed to share my story of trials and triumphs and show the world that through the atonement and with the love of our Heavenly Father we can find true happiness.  I have since spoken to numerous groups around the state of Utah and even traveled to Washington.  I have been able to feel like I am doing what the Lord wants me to do.  It has truly been a blessing to my life and also to my family's life.  I am so grateful for the outpouring of love and acceptance I feel through the blog and also through speaking.  It is awesome to see something good come from all the trials I have gone through!

The blog went viral just 10 days before the 10th anniversary of Jake's death.  As I approached that milestone I had thought about how tough the last 10 years had been.  I decided that I was ready for a new decade.  10 years that would bring more peace and joy into my life.  A decade full of service and doing the Lord's will in my life.  This last year has been a great start to that decade!

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