Friday, September 2, 2011

Alea's Fundraising Page

http://www.firstgiving.com/fundraiser/chris-garner-1/awalkwithourangel2011

Last year this is what I wrote on Alea's Buddy Walk page, On August 14, 2010 Alea May joined the clan. It came as a surprise when she was diagnosed with Down syndrome. She is a true angel. She has been such a wonderful blessing to our home and has brought an amazing spirit."

I must admit, I had no idea then how amazing her spirit was. I have been blown away this year with her influence on our family.  She has a nack, even at a young age, of identifying those who need a smile and giving it to them.  You can't help but feel good when you are with her.  She is such a blessing!
The UDSF strives to bring families together to share experiences, challenges, goals, and dreams and to educate parents and society in understanding and appreciating the needs of individuals with Down syndrome. As parents gain knowledge, they are empowered to become better advocates for their children, thus providing them with increased opportunities to reach their highest potential.

Many thanks for your support as we continue our walk with Alea through life with Down syndrome-- and don't forget to forward this to anyone who you think might want to donate too! Every little bit helps.

Last year we reached our goal within 20 hours of posting Alea's Page. Do to the business of life, I am late getting my page up and running so hopefully we can have the same results this year.


Friday, August 12, 2011

A Little of Everything – Birthday Week Continues

Would birthday week be complete without a little bit of the tough stuff that Little Angel occasionally deals with?  Last night she had another sleep test.  We are hoping the results will mean that she doesn’t have to have oxygen at night anymore.

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Thursday, August 11, 2011

Learning and Laughing - Birthday Week Continues

Little Angel loves to learn.  She is always looking around her or trying to get into things.  I love it.  She is also the happiest baby I have ever seen.  We love her smile and her laugh.  She looks for the person not engaged or paying attention to anything and focuses on them until she catches their eye and then she gives them her big smile.  It has been fun to watch how much she cares for peoples feelings even at this young age.  Here are some examples from her first year. 






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Tuesday, August 9, 2011

It’s Birthday Week

Our Angel

Can you believe it!!  Sunday our Little Angel will be turning one.  What a wonderful year it has been.  This week I will be posting some of the highlights.

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Having her in the NICU was so hard.  Looking back at it now after getting to know her makes it seem even harder.  She proved from the get go that she is very patient and long suffering.

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The girls couldn’t wait for Little Angel to arrive and they haven’t stopped loving her for one second the entire year.  Little Angel couldn’t have asked for a better set of big sisters.

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She loved her swing.  It was her preferred napping spot.

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Little Angel introduced us to a new world of wonderful people.  We look forward to getting to know the community even better this year.

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This was one of 3 times this year that she fell asleep in my arms.  She has to be exhausted to do this.  She likes to sleep in a bed (or her swing) but not in your arms.

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Her first Halloween.  She made a fantastic Tigger.  I will post more review pictures through out the week as it is now time for bed.

Sunday, July 10, 2011

Good Grief, It’s Memorial Day (Part 3)

This is the final part of the series of posts I started around Memorial Day.  I have tried to start it several times, but have not been sure what or how to share it, so here goes.

(The following paragraphs in green font were written a month ago after the Mingo Family Reunion.  The rest was written tonight)

Two years ago we finished up a very fun weekend at Bear Lake with Jodi’s immediate family. It was the end of the annual Mingo family reunion. Little did I know that when I said goodbye to Jodi’s dad and brother Jed, it would be the last time I would see them on this earth.

This weekend we had the annual Mingo family reunion.  Last night as a laid in bed, my thoughts drifted back to that reunion two years ago in Bear Lake.  Much has changed for this family since then, but I am certain, that over the last 3 days, the entire family was together even our angels.

As I laid in bed, I was well aware of my feelings. It is a feeling I have felt often when I reflect on them, and I was able to understand it more than I have in the past.

There is a scene in the movie The Other Side of Heaven, where the main character John, a young man who has chosen to sacrifice three years of his life to serve a mission in Hawaii for his church, is looking up at the stars.  He is thinking of the girl of his dreams that he left home in Idaho.  John is taking solace in the fact that at least his girlfriend is looking at the same stars he is.

While based on a true story, The Other Side of Heaven definitely romanticizes the account.  Like John, I too chose to sacrifice two years of my life while leaving the girl of my dreams at home in Idaho.  Perhaps I can understand the feelings that Elder John Groberg

While serving a mission for the Church of Jesus Christ of Latter-Day Saints you are asked to leave the worries and concerns of home at home and focus on the missionary work you are called to do.  I was diligent in my missionary efforts and can honestly say the concerns of home did not effect me while I served.  At night, after a long day of work, I would think of home as I laid down to sleep. I would then allow myself to think of those at home whom I loved and missed who were living their lives thousands of miles away from me.  I would feel a longing for them.  It was one of the hardest things I ever did.

As I laid in in bed after the reunion and reflected on Jodi’s dad and brothers, a similar filling filled my heart.  It is this feeling that has plagued me since their passing.

Jed was a remarkable young man.  My first memory of Jed could be considered one of my most embarrassing moments.  In high school I had driven to the middle of nowhere, where Jodi grew up to pick her up for a date.  There was a snow storm that had blown through.  In an attempt at chivalry, I decided to drive my parent’s mini van all the way up the drive way to Jodi’s front door so she would not have to walk the 300 yards through the drifting snow to the main road.  Needless to say, in my attempt to leave the drive way, the Ford Aerostar got stuck.

I took Jodi up to the house and asked to borrow a shovel.  A 14 year old Jed came out and spent the next 45 minutes helping me dig out.  Jodi and I then went to a movie as the storm continued.  When we returned to Jodi’s house I decided to not chance getting stuck again and we walked from the main road.  After returning to my car I proceeded back the Aerostar into the borrow pit as I backed onto the main road.  I probably dug with my hands for 30 minutes.  I did not want to go back up to the house at 12:30 in the morning.  Sheepishly I went back up to the house to borrow a shovel.  Again, Jed came out and dug with me for another 45 minutes to get me out of the ditch.

After I returned from my mission to Brazil, Jed was called to serve his mission.  He was also called to serve his mission in Brazil.  At the time I was teaching Portuguese in the Missionary Training Center in Provo, Utah.  I had the opportunity to teach him before he departed on his two years of service in that wonderful country.  I always appreciated the special bond it created as we shared a common language and a common love for the people of Brazil.

Jed lived life.  He was a friend to all those he came in contact with. I miss him very much.

Ron was my father-in-law.  He was very kind and generous and helped Jodi and I often.  We were very different from each other.  I never felt really close to Ron, but I respected him for the kindness he always showed me.  It is silly looking back now how I allowed the stigma that sometime comes with the whole in-law dynamic effect our relationship.

Ron drove truck for as long as I have known the family.  Jodi and I started our friendship in 1990 when we were both 14.  He was always on the road providing for his family.  Until I was 21, I had probably only met Ron a handful of times.  I had gotten to know the rest of the family, but I did not know Ron well at all.

On one occasion, Jodi was talking to her dad and told him that our car had broken down the day before and that we would be taking it to the mechanic.  The next morning Ron showed up on our door with a truck ready to tow the car to his trusted mechanic.  I was mad. I went along with it and helped him load the car, but inside I was mad that he was involving himself in what I saw to be my business.  In reality, I read it as an indication of me not being the man of my own house and providing for my family.

How immature and petty I was.  That is the type of guy Ron was.  He just wanted to help other people.  I regret that I occasionally took his acts of kindness as indictments of the inadequacies I felt in my role as a provider for my family.  They say you live and learn.  Hopefully I will get a chance to tell him someday how appreciative I am for all of the things he has done for my family.

On one occasion, Jodi and I had arrived at the Mingo home for a weekend visit from school around 11 pm.  Ron was just getting ready to head out with a load that needed to be in Salt Lake City at 3 am.  Having never ridden with him on a haul, I saw this as a bonding opportunity.  Jodi and I both decided to go with him.  After we drove past the Idaho port of entry a few miles outside of Rupert, Ron looked at me and said, “Your going to learn how to drive a truck”.  I grew up on a farm and had driven my fair share of potato trucks, but I had never driven a semi.  To make it even more interesting the semi had a trailer followed by a pup trailer.

It was a fun experience, and one I remember fondly.  At one point on the journey as we came down a hill near Honeyville, Utah, the truck built up some speed.  At that  time there was some major construction going on in the area and the small bridge that crosses the Bear River quickly condensed into one very small lane.  My stomach was churning as it would if I were going off the tall drop of a roller coaster.  How we ever made it through that narrow lane without crashing I will never know.  Ron seemed calm and collected until after we made it through the hazard.  He then looked at me and said, “Whew, that was close”.  He must have thought I could do it as he let me drive back home as well.

Ron wanted everyone to hear about Jesus Christ.  I have heard many stories of him having a box full of Book of Mormons and Ensign magazines in his truck to share with those he met during his travels.  He enjoyed helping others and was one of the most charitable people I have known.  While we may have seen some things in different ways, he taught me a lot about helping people from all walks of life.

Today marks the 2nd anniversary of their death.  When you lose people you love, Memorial day becomes much more than just a holiday in may.  Memorial days come throughout the year on anniversaries, holidays, birthdays, and death dates.  A few years ago I wrote the following about Jed on another blog I maintained.  I would like to share it now.

May 7, 2010
Saudades

I would translate that to English for you but I can't.  There isn't a word that explains it.  I lived in Brazil for 2 years, and while away from home for those two years, I truly understood the meaning of the Brazilian word saudades.  I have been home for 13 years now, and I have yet to find  a word in the English language that describes what saudades truly means.  There are words that come close, but none that truly signify what it means to have saudades.

miss - verb: to discover or feel the absence of

pine - verb: long for

long - verb: desire, crave

yearn - verb: desire strongly

Notice that these words are all verbs.  They are all something you do.  I miss him.  She pined for her husband that was away to war.  The child longs for the embrace of his mother.  Grandpa yearns for grandmother now that she has gone.  You get the point.  It is something you are actually doing. All of these examples would be much more precise if we had an equivalent to Saudades.  Saudades is a noun.  It takes no action to have saudades.  It is not something you do.  It is something you have.  You may learn to deal with it, but it becomes part of you as long as you are away from the one, or ones you love.

I had a conversation with my 6 year old the other night went something like this.

"Dad, if no one had to die, this life would be happy".  This was quite the insight from out of the blue.  I asked what she meant.  "Dad, I just miss them.  Sometimes I ask, 'Why did they have to die?"'.  I admitted that I had asked the same thing.  She then asked, "Why did we only get 2 hours with Austin?  Why did Grandpa, Jed, and Jordan have to leave us?".  Deep questions from my 6 year old.  We had a good discussion and went to sleep feeling as good as we could.

I have thought about that conversation since then.  I have thought a lot about saudades, and how almost like a medical condition you don't always have them on your terms.  The only cure, is to be reunited with those who are away from you.  The only treatment I have found, is to serve others, and always remember those you love.

Jed, Jordan, and Ron, as I think of you today on the anniversary of your deaths, and as I think of you often, Eu tehno saudades de voces.

A video interview with Jed – Link

Wednesday, June 1, 2011

Guardian Angel Jordan

Gaurdian Angel Jordan

Post from Memorial Day Weekend 2011

 This last week EC and Keena each had dance recitals.  I will never go to another recital that I do not think of Jodi’s youngest brother Jordan.  In 2009 I decided to change a patch of lawn into concrete to extend our driveway.  Jodi’s brother convinced me to try it myself.  He was working as an estimator for a local construction company at the time and said he would help us do it.

When it came to helping other people, Jordan was one of the best I’ve ever seen.  Whenever I took on a project that was overly ambitious, it was Jordan who came and bailed me out with the knowledge he had and I lacked. We did some redecorating a few years before Jordan died.  I wanted to put bead board around the bottom of the room.  Jordan offered to help, and said we should do window seals and crown molding as well.  He then came over and let me help him do it.  He was an amazing craftsman, and his attention to detail was second to none.

Jordan loved and respected all that he came in contact with.  He was always happy and treated his nieces and nephews like a favorite uncle should. I can still hear the way he said EC’s name as well as Keena’s.  He was always happy and laughed at everything.
My mourning process in losing Jordan has been an interesting one.  I feel guilty sometimes for how hard it has been for me. I am not the wife, the mother, the sisters, the children of Jordan, I am just the brother-in-law, yet I miss seeing him, talking to him, asking advice from him more than I would have imagined.  The first months after the crash, I would call his cell phone just to hear his voicemail message.  I still have his number in my phone to this day.

Today as we were at the cemetery, I thought how proud Jordan is of his wife and his children. His kids love him so much, and he remains an everyday fixture in their lives. As his 4 year old let his balloon go to heaven, he chased it as it rose into the sky and yelled, “I love you daddy!”.  His kids sang the Lonestar song, I’m Already There just like they sang last Memorial Day.

We took his kids in our car as we left the cemetery.  It was a cold and windy day today, so I had sat in the van with Little Angel while Jodi’s family went through the second year of our new Memorial Day traditions.  I asked the kids if they could sing the Lonestar song for me as I did not hear it while sitting with Little Angel.  They said they needed the music, but the 4 year old then said, “I can sing you a song I made up for him”.  I told him I would love to hear it.  Hear are the lyrics he produced as we drove as best as I can remember.
I wish you didn’t have to die Daddy You are always in my heart wherever I go                                                    I know you help me all the time even when I am not at home You are always in my heartI wish you didn’t have go away I love you Daddy You’re my daddy and I miss youI know you always help me even though you are in HeavenYou are always in my heartJordan, your children are making you proud.  Little man 4 year old is quite a man of the house.  They are helping your sweetheart every day, and you are, as your son sang it, always in their hearts.

Jordan is the youngest of 6 kids.  He has 4 sisters.  It is a well known fact in the family that his older sisters often dressed him up when he was little.  There are pictures of him in tutus and other ballet attire. It is not for this reason that the dance recital made me think of him.  As we were replacing the grass with concrete one day, it was time for me and Jodi to take the girls to their dance recital.  Jordan stopped working, grabbed his kids, and came to support his nieces.  This dance recital ended up being about two hours long.  Except for the 10 minutes my daughter was on the stage, the other 110 minutes had me wanting to jump off the balcony.  Jordan never complained.  He made my daughters feel how important they were to him.  I am grateful for that.

The last time I saw Jordan was on a Saturday afternoon in late July.  We all decided to go swimming at the American Fork swimming pool.  I had an homework assignment that was due the next week, and felt I had to leave as soon as possible to get to work on it.  Jodi had taken some cake as it had been EC’s birthday earlier that week.  Everyone else was staying to have dessert, but that assignment for me was pressing.  I remember as I was walking away, Jordan yelled, “Chris, good to see you and thanks for coming”.  I waved back and got in my car to go home not knowing that I should have been cherishing the remaining opportunities I would have to talk with Jodi’s brother.  I would never see him again.

Jordan, I want you to know that I am grateful you are my brother in law.  As you know, you married an amazing woman who loves you so much.  You two had the perfect love story.  Your children love you and are very proud of you.  They know because of the blessings of the temple, they will be with you again as a family.  It is not just an understanding that you are in Heaven and that they will be in Heaven too, it is a knowledge that because of being married in God’s temple, you will be together in Heaven as a family unit with you as their father.  What a blessing that is.

We miss you Jordan!  You are always in our hearts!
PicturesJordan’s Handy work
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Memorial Day 2010
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Monday, May 30, 2011

Good Grief, Its Memorial Day (Part 2)

This last week EC and Keena each had dance recitals.  I will never go to another recital that I do not think of Jodi’s youngest brother Jordan.  In 2009 I decided to change a patch of lawn into concrete to extend our driveway.  Jodi’s brother convinced me to try it myself.  He was working as an estimator for a local construction company at the time and said he would help us do it.

When it came to helping other people, Jordan was one of the best I’ve ever seen.  Whenever I took on a project that was overly ambitious, it was Jordan who came and bailed me out with the knowledge he had and I lacked. We did some redecorating a few years before Jordan died.  I wanted to put bead board around the bottom of the room.  Jordan offered to help, and said we should do window seals and crown molding as well.  He then came over and let me help him do it.  He was an amazing craftsman, and his attention to detail was second to none.

Jordan loved and respected all that he came in contact with.  He was always happy and treated his nieces and nephews like a favorite uncle should. I can still hear the way he said EC’s name as well as Keena’s.  He was always happy and laughed at everything.
My mourning process in losing Jordan has been an interesting one.  I feel guilty sometimes for how hard it has been for me. I am not the wife, the mother, the sisters, the children of Jordan, I am just the brother-in-law, yet I miss seeing him, talking to him, asking advice from him more than I would have imagined.  The first months after the crash, I would call his cell phone just to hear his voicemail message.  I still have his number in my phone to this day. 

Today as we were at the cemetery, I thought how proud Jordan is of his wife and his children. His kids love him so much, and he remains an everyday fixture in their lives. As his 4 year old let his balloon go to heaven, he chased it as it rose into the sky and yelled, “I love you daddy!”.  His kids sang the Lonestar song, I’m Already There just like they sang last Memorial Day.

We took his kids in our car as we left the cemetery.  It was a cold and windy day today, so I had sat in the van with Little Angel while Jodi’s family went through the second year of our new Memorial Day traditions.  I asked the kids if they could sing the Lonestar song for me as I did not hear it while sitting with Little Angel.  They said they needed the music, but the 4 year old then said, “I can sing you a song I made up for him”.  I told him I would love to hear it.  Hear are the lyrics he produced as we drove as best as I can remember.
I wish you didn’t have to die Daddy 
You are always in my heart wherever I go                                                   
I know you help me all the time even when I am not at home
You are always in my heart
I wish you didn’t have go away
I love you Daddy
You’re my daddy and I miss you
I know you always help me even though you are in Heaven
You are always in my heart
Jordan, your children are making you proud.  Little man 4 year old is quite a man of the house.  They are helping your sweetheart every day, and you are, as your son sang it, always in their hearts.

Jordan is the youngest of 6 kids.  He has 4 sisters.  It is a well known fact in the family that his older sisters often dressed him up when he was little.  There are pictures of him in tutus and other ballet attire. It is not for this reason that the dance recital made me think of him.  As we were replacing the grass with concrete one day, it was time for me and Jodi to take the girls to their dance recital.  Jordan stopped working, grabbed his kids, and came to support his nieces.  This dance recital ended up being about two hours long.  Except for the 10 minutes my daughter was on the stage, the other 110 minutes had me wanting to jump off the balcony.  Jordan never complained.  He made my daughters feel how important they were to him.  I am grateful for that.

The last time I saw Jordan was on a Saturday afternoon in late July.  We all decided to go swimming at the American Fork swimming pool.  I had an homework assignment that was due the next week, and felt I had to leave as soon as possible to get to work on it.  Jodi had taken some cake as it had been EC’s birthday earlier that week.  Everyone else was staying to have dessert, but that assignment for me was pressing.  I remember as I was walking away, Jordan yelled, “Chris, good to see you and thanks for coming”.  I waved back and got in my car to go home not knowing that I should have been cherishing the remaining opportunities I would have to talk with Jodi’s brother.  I would never see him again.

Jordan, I want you to know that I am grateful you are my brother in law.  As you know, you married an amazing woman who loves you so much.  You two had the perfect love story.  Your children love you and are very proud of you.  They know because of the blessings of the temple, they will be with you again as a family.  It is not just an understanding that you are in Heaven and that they will be in Heaven too, it is a knowledge that because of being married in God’s temple, you will be together in Heaven as a family unit with you as their father.  What a blessing that is.

We miss you Jordan!  You are always in our hearts!

Pictures

Jordan’s Handy work
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Memorial Day 2010
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Saturday, May 28, 2011

Good Grief, It’s Memorial Day (Part 1)

Tonight I was at a neighbor’s house.  She is an amazing school teacher who is getting close to retirement.  She is also a widow.  We were discussing some matters of her lawn and the deck that the neighborhood is in the process of re-staining. As I got ready to leave, she was kind enough to share a little of her story with me. She was 27 when her husband was killed as they were in a car accident returning home from a family vacation. They had 3 young daughters, the youngest being 9 months old. I know that people say their heart aches, or that stories like that break their heart, but that was not the case.  I felt how much she loves and misses her husband all these years later.  That love, is not heartbreaking.

As I crossed the street to my house, I thought of another family I know who has experienced similar tragedy.

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I took the picture above of Jodi’s brother and his young family.  We had just wrapped up a weekend family reunion at a cabin at Bear Lake.  As we were packing up the cars, Shelley asked me to snap this picture.  Little did I know, that it would be one of their only complete family pictures.

August 9, 2009

I will never forget that day.  I had just recently taken a new job where I work.  My manager had scheduled a training for me to come up to speed on what I would be doing.  The training was conducted over the internet and phone.  We had just started back after lunch when Jodi called me.  She told me that her dad and brothers had decided to take a rare father/sons vacation together.  Rare, because these three men worked harder than anyone I know.  Her older brother Jed, was a pilot and had decided to fly the 3 of them to the Oregon Coast to go fishing. 

Jodi and I were unaware of the planned trip, so it came as a shock when Jodi said, “They never made it to their hotel, and we haven’t heard from them since they left”.  I was immediately sick to my stomach.  Jodi comforted me saying that they would be ok.  She was handling it really well and told me I should stay at work until we knew more.

I returned to training, but was not paying attention.  A short time after Jodi called, I went to my boss, also a close friend of mine, and told him the situation.  I had to be home with Jodi.  The next hours were excruciating.  Jodi had gone and picked up Shelley’s two oldest kids so that she could deal with the stress without having to care for her kids.  It was agonizing as we kept them active and happy as we waited word.  Around 9 that night, Jodi got the call from her sister.  Police officers had come to her mom and Shelley to notify them that 2 husbands and 2 sons would not be coming home.  I was numb.  I did my best to comfort Jodi as we cried in our home office so that the kids would not see us.  Shelley wanted to be the one to tell her kids, but it was late enough it would need to be the next morning. 

The next few days after that are still a blur.  I remember taking the kids to Shelley’s and watching her tell them that Daddy had gone to live with Heavenly Father.  I love Shelley.  She is one of my heroes!  She is so brave.  I remember lots of people coming to her house and lots of food being brought for the family.  None of us had much of an appetite.  I remember media starting to call Shelley’s house.  We decided that I could manage that for the family.  I remember talking to KSL, Deseret News, and KUTV.

The following weeks and months were challenging for the family. The funeral(s) were hard, yet helpful at the same time for me. The church was packed.  I want to say there were around 1000 people that attended the service in our hometown in Idaho.  The service and love that we felt from friends, family, and even complete strangers was amazing. 

Memorial Day

I was raised in a home that commemorated every Memorial Day at the cemetary. My parents, aunts and uncles, and grandparents would go out and clean and tend to the gravesites of the many ancestors that rest in Rupert. Both of my grandparents are from families that were established there.  I have two sets of great grandparents buried in Rupert, a set of grandparents, several great aunts and uncles, and an uncle, Lonnie Ray, who died within a few hours after he was born.  All of them are buried in the same area, so memorial day growing up for me was almost like an extended family reunion.

Sometimes my friends would give me a hard time as their Memorial Day traditions differed quite a bit from mine.  They would go camping, boating, or fishing.  I was ok with that, cause I always liked the traditions we had.  Memorial Day is even more significant to me now.  In the Paul Cemetary, just a few miles south west of the Rupert Cemetary, Jodi now has 2 grandparents, her dad, two brothers, and our son now buried close to each other.  All of them have passed since 2005.

Memorial Day is a time to celebrate and remember those who have gone before us.  This is the 1st of a 3 part post.  I wanted to give you some context about the 3 angels I will be introducing to you over the next two posts as I remember them and share some of my experiences with you.  I have briefly mentioned these three angels before, wondering if and when I would share the whole story from my perspective.  After talking to my neighbor about her husband she lost over 30 years ago, I feel it is time for me to share some of what I remember of Ron, Jed, and Jordan.  Hopefully it will encourage some to remember their loved ones that now watch over them.

Pictures From the Funeral

Wednesday, May 25, 2011

Sunday, May 22, 2011

I Apologize in Advance….

So before I post what you all are wanting to see, pictures, let me list some excuses…
  • 4 days of training in Phoenix for my work
  • 3 Cranial Bands Helmets for Little Angel
  • 7 trips to Fit Well in Salt Lake to try and get try and get the helmets to FIT WELL (GRRRRRRRRR)
  • 1 looong letter to Altius Insurance asking them to reconsider denying payment for Little Angel’s helmet
  • 7 four hour classes each Wednesday Night
  • 4 intense quizzes, 5 research papers (6-7 pages each), and 4 group projects
  • 1 AA meeting
  • 1 paper on the AA meeting
  • 1 nine year old turning ten
  • 1 American Idol Microphone for said 10 year old’s birthday party
  • 1 birthday party for said 10 year old
  • 1 trip to Idaho and a look at Austin’s newly laid headstone
I am sure there are more.  Needless to say, it has been a busy couple of months.  Things with our little Angel are going great.  She is such a cutie.  She has recently learned to wave and as usual is almost always all smiles.  We have been able to take her out where ever we go since the end of April.  She loves the new world she is experiencing and especially loves being outside.
She has had her helmet in one form or another since the end of March, but the time did not officially start until the first part of May.  To say this helmet experience has been a nightmare would be an understatement.  Our insurance denied the claim to pay for it, stating that it was not functionally necessary.  Jodi put together a multiple page (8-10 pages) letter full of studies and other information that we sent to them in our appeal letter.  They have denied that as well so we are appealing the appeal, but are doubtful it will do anything.  Some have suggested we get a hold of a news station so that they can raise awareness of our insurance’s decision.  We have not decided to do that yet, but are leaning against it.  I never even thought about the added cost that kids with special needs and unique situations cost before I had to deal with it.  I must say, it is worth every penny.
I wish the nightmare would only include the insurance.  The helmet company can’t seem to get it to work right on Little Angel.  She had sores on her head for most of April as they went through 3 different helmets trying to make it work.  They just have not fit right, and are constantly in her eyes.  Finally on Friday, Jodi called them she had had it.  She wanted our money back.  They told her to give them one more chance.  They were willing to pay for our gas, and had us talk to a different technician.  The changes seem to be better, but the jury is still out as to if this helmet is fitting right.  It seemed in her eyes again today so we will see (no pun intended).
Now let me go find some pictures…

Sunday, March 27, 2011

Picture Update

The last few weeks in pictures.  Little Angel learning to sit by herself, experiencing her first piano recital where EC and Keena performed, Mom’s birthday, and watching signing time with the girls.

Monday, March 21, 2011

World Down Syndrome Day

Not only is 3/21 the first day of spring, it is also World Down Syndrome Day.  Before we had Little Angel, our girls knew very little about Down syndrome.  I am attaching a video that is great to show your kids to start the discussion with them about Down syndrome.  Maybe your family could watch it for Family Home Evening tonight.

http://downtownds.com/kidzone.html

Sunday, March 20, 2011

Ask Heavenly Father

I realize it has been a long time since I have updated the blog.  I don’t know why, but every time I have started typing, I have not felt like writing anything.  Chalk it up to writers block.  I thought I would give you all (at least those of you still here) an update.

Little Angel is doing so good.  The doctors are so happy with her health.  She is growing like crazy.  In the last month or so she is sitting up by herself and is working on using her hands and legs.  She loves to be with her mom and sisters.  They take very good care of her.  In the last month or so, her heart has checked out and shows no ill signs of the hypertension she was born with.  The cardiologist said we would not need to be seen for 6-9 months.  The pulmonologist said that her lungs sound really good as well.

Little Angel will be getting a cranial helmet.  Since she was born, she has favored looking to the right thus causing her head to not form in the correct shape.  We have been trying for a couple of months to make sure she is facing to the left if she has to lay down.  Now that she is sitting, we try to have her sit up as much as possible.  She will have to wear the helmet for 3-4 months.

Unfortunately, our insurance has denied our claim for the helmet, so we will be selling advertising space on her head (helmet) Winking smile.  Having Alea has opened my eyes to some of the issues of healthcare.  I thought I had a valid opinion before Little Angel was born, but I must admit, I have become a little less opinionated about most things over the last 7 months.  I certainly don’t base my opinions from things I hear on the news regardless how fair and balanced they may or may not be.

The doctor at Primary Children’s said they rank the severity of needing a helmet on a scale from 1 to 10.  1 being least severe, and 10 being the most severe.  Little Angel’s head ranked at a 9.  Research shows that if it is not fixed now, it may need to be fixed through surgery later.  Research also shows that if not treated it could cause hearing and vision issues (If interested in the research let me know I can send the articles to you). 

Our insurance considers it to be a cosmetic treatment just as it considers braces to be a cosmetic treatment.  When I found that out, I was surprised the insurance company didn’t include a copy of Carli Simon’s famous single.  I understand that there are cosmetic advantages that will come from this treatment.  Little Angel is more alike than she is different, her head shape does not need to contribute to her differences no matter how vain the insurance thinks that makes her.

I have had this post in my head for some time, but I have hesitated in sharing it.  I have struggled between sharing too much of our challenge that people may think we are a charity case, or that I am seeking pity. Our family has been very blessed, and Alea will get the treatment she needs.  These helmets are expensive.  We are appealing the insurance’s decision and are hoping they will understand that the helmet is medically necessary.  If not, we will make it work. 

This has caused me to stop and think about the state of healthcare in this day and age.  In no way do I want this blog to be a political blog, but my perspective has been changed.  Regardless of which side of the argument you fall on, there is one point that should be agreed upon by all.  Something needs to be done.  What if there was no way we could make it work?  What if Jodi and I were working two jobs just to make ends meet, and a helmet was not an option.  I am sure there are people in that situation.

I have heard both sides.  The government should step in and help everyone without insurance, while the other side cries that this is socialism taking hold of America.  I find myself somewhere in the middle, understanding that changes need to be made.  In church today we learned about charity. 

While the politicians argue about what is right and wrong about our healthcare, I would encourage you to consider what YOU are doing to help those in need.  Charity doesn’t come from the government, it comes from us.  If you are able and are not doing anything for those who need, I would encourage you to pray and ask Heavenly Father who you can help, and how you can help them.  It may be He answers telling you to send support to earthquake victims in Japan, or He may answer telling you to help the family down the street.  When you receive that answer, do what He asks you to do.

Our family is very lucky.  We have great support from family, friends, and neighbors as we are able to meet our needs.  I am sure that there are those in this world who could use the help, some of them being much closer than Japan.  Our little angel is opening my eyes to this every day.

Mosiah 4:26

“And now, for the sake of these things which I have spoken unto you—that is, for the sake of retaining a remission of your sins from day to day, that ye may walk guiltless before God—I would that ye should impart of your substance to the poor, every man according to that which he hath, such as feeding the hungry, clothing the naked, visiting the sick and administering to their relief, both spiritually and temporally, according to their wants.”

Sunday, February 27, 2011

Happy Birthday Melody!! The big 21!

Yesterday was my cousin Melody’s birthday.  She turned 21.  She is a great example to my family and especially my daughters.  I hope you had a special day Melody. 

Here are some  pictures of Melody:

Here is a write up done by her parents that was printed in the new parents guide that the Treasure Valley Down Syndrome Association publishes.

Thursday, February 24, 2011

A Call to Action - Write your state legislature TODAY

I need to ask a favor of any of you that read this blog.  The economy may soon take its toll on those children who currently receive help from Utah's Baby Watch Early Intervention Program.  The program in Utah County is called Kids on the Move.  We would seriously be lost with out them.  The teach us how to help Alea develop, both cognitively and physically.  Without them, we would seriously be guessing on how to help her.  (I think I used seriously twice...get the point? )  ;)


The proposed budget cuts could take away these programs.  Below is a letter from the our local Director of Early Intervention.  Please take a minute to write your state lawmakers, for Alea, and all the other angel's who benefit.  Encourage your friends to write as well.



For those in Utah, you can find who your state representatives are here: http://le.utah.gov/Documents/find.htm

Now is the time for action!

Dear Parent,

The end of this legislative session is quickly approaching.  Final budget decisions are being made that will impact the Baby Watch Early Intervention program, including our program at Kids on the Move.  NOW is the time for action! The ultimate budget decisions rest with the Executive Appropriations Committee. Legislators have heard from families like you in the past few weeks, but it’s critical that the Executive Appropriations Committee members hear from you now! 

The proposed cuts could force Baby Watch to change the eligibility requirements for infants and children, birth to 3, who are served in Utah. Prior to 2003, we were able to serve children who were “mildly” delayed, but had to stop serving these children due to budget constraints. If proposed cuts are made during this session, Early Intervention Programs, like Kids on the Move, may be unable to serve children who have a “moderate” developmental delay. 

Surprisingly, we’ve found that many legislators are not familiar with early intervention and don’t understand the critical services we provide. We urge parents to contact members of the Executive Appropriations committee and advocate for the services your child and family have received through Early Intervention. Be sure to reference Baby Watch Early Intervention Program since this is how the program is listed on the state budget. I’ve attached a list of members of the Executive Appropriations Committee for your convenience. It’s especially important to contact, Representative John Dougall since his district includes the Alpine School District area that we serve. 

John Dougall
H: (801) 492-1365  M: (801) 362-7155

Please tell your story of how early intervention services helped you and your child. Legislators are especially concerned about the economic impact of programs.  Research has shown Early Intervention can actually decrease the need for costly services as a child grows into adulthood.  Let legislators know how early intervention services have been an investment in your child’s future.    

Any efforts you make to reach out to your legislators at this final phase of the legislative session are appreciated.  Thank you in advance for your time. Feel free to contact me with any questions.

Sincerely, 

Kelsey Lewis, MSW
Early Intervention Program Director
Kids On The Move
475 West 260 North
Orem, UT 84057
w 801.221.9930 x110
klewis@kotm.org