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

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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



 
 

 
 
 
 
Memorial Day 2010
 

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.

       

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

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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) .  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.”

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!

 

Publish Post

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

jdougall@utah.gov

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

From Our Editor in Chief – God Loves You

Many years ago, I had a sister who was going through an incredibly difficult time in her life. My heart broke for her as I watched her struggle with her faith and her concept of herself. This sister always had a huge heart, and she knew that in order to bring herself out of the depression she was in, she needed to give service to others who had it worse than her.

She joined a mentorship program and was responsible for a teenage boy with severe autism. Anyone who knows someone with autism knows that they struggle greatly with non-tangible things such as religion or faith. The boy’s mother was a drug addict, but her parents, the boy’s grandparents, were faithful, church-going people. They would take the boy with them to church, but he didn’t get much reinforcement from his mother.
My sister retold me an incident she had with the boy where he asked her, “Does God love me?” My sister was at that time struggling greatly with that question herself. She didn’t exactly know how to answer him. She gave him a vague, “Yes, he does.” But she didn’t feel it was true, and it scared her.

When she came to me with this problem, I too was caught off guard. Well, yes, He loves you, but then I didn’t know how to put it so she understood. And I’ve thought about that conversation many, many times for a way I could answer someone if they came to me with that question again. A “yes He does” doesn’t seem sufficient. And even more, how do you explain that to a child of God who struggles with learning disabilities, or someone who, unknowing to most people, is living life as a spiritual paraplegic?

Recently I’ve returned to work full time, and to help me stay awake, I sometimes listen to a radio program produced by The Church of Jesus Christ of Latter-day Saints. The site has different podcasts that would be beneficial for anyone of any faith who enjoy listening to uplifting, positive people. The podcast I was listening to on one particular morning was of a woman describing the struggles she endured in raising three children with severe handicaps.

The woman’s name is Joyce Erickson, and you can read more of her inspiring stories on her Web site, www.our-beehive.com.

This one particular story she told was about her son, Mark. As Chris can appreciate, Mark loved all things BYU football. I didn’t hear the particulars of his condition, but I could tell that Mark couldn’t walk, had limited speech, and he had a learning handicap. (Joyce said her son likes to refer to himself as handicapped, so that’s why I use the term “handicap.”)

He was getting off the bus one day when he was in high school, and Joyce could tell he was sad, which wasn’t typical for Mark. She could tell he was on the verge of tears, so she hurriedly pushed his wheelchair inside the house and let him cry for a few minutes.

She finally asked him, “Did something bad happen to you at school today?”

Mark answered, “Mom, the boys at school are so lucky. They can run, and they can play football, and they can run fast and run races.”

From here is where a stroke of genius or a beautiful intervention of the Spirit of God hit Joyce, and what really struck at my heart. She repeated the following conversation:
“The boys at school are lucky, Mark, but did you know what? Everyone in some way is lucky. Did you know that?”

And he said, “No.”

And I said, “Well, they are.” And without even thinking about it before hand, I held up my left hand and I pointed to each finger, and I said, “Mark, your friends are lucky,” as I pointed to each finger, “because they can run, they can play football, they can ride bikes, play computer games, and write…”

“And draw,” Mark said.

“Yeah, and draw,” I said. “But you know what, Mark? You’re lucky, too.” And I held up my right hand, and I said as I pointed to each finger, “You’re lucky because you got to go into the BYU locker room and meet all the BYU football players, and you got to meet the BYU basketball players. And you got to sing with the Tabernacle Choir. And you got to meet Brother Ottely, who is the leader of the Tabernacle Choir.”

And then Mark said, “And go on the U.S.S. Nimitz.”

And I said, “Yeah, and go on the U.S.S. Nimitz. Do you know how else you’re lucky, Mark?”

And he said, “No.”

And I said, “You’re lucky because everyone likes you. I don’t know anyone who doesn’t like you. Do you know one of your friends at school said to me once, ‘Mark, is so lucky. I wish I had as many friends as Mark has.’ And when you were running for governor of the fourth grade, a girl who was running against you said, ‘It really isn’t fair. Everybody knows Mark and everybody likes him.’”

I said to Mark, “Did you know that?”

And he said, “No.” But then his face started to brighten up a little bit.

And I said, “Do you know how else you’re lucky, Mark? You’re lucky because Satan can’t tempt you. Satan can tempt your friends to lie and to cheat and to steal and to disobey their parents and to be mean to other people, but he can’t tempt you to do any of those things.”

“Everyone is just lucky in different ways. Your friends are lucky in these ways,” as I held up my left hand.

“And you’re lucky in these ways,” as I held up my right hand.

“Mark, if you had a choice, would you be lucky like this,” as I held up my left hand, “like your friends are? Or would you be lucky like this,” and I held up my right hand, “like you are?”

And without even hesitating he said, looking at my right hand, “I want to be lucky like that.”

Isn’t that story beautiful? That story makes me want to be a better parent.

So to answer my sister’s question of the boy with autism who wondered, “Does God love me?” I would emphatically say, “Yes, He does!” And I would list all the ways God loves that boy, and I’d do the same for my sister. And I would be specific. I wouldn’t give rote answers geared toward all individuals, but specific examples of why that boy is lucky. Hopefully it would help him to see God’s hand in his life. Because He’s there—in all our lives.

Cindy Fisher
Editor in Chief
awalkwithourangel.blogspot.com

From Our Editor in Chief – Life Goes On

Editor in Chief (EIC) - These next questions make me uncomfortable, but I’m going to ask them anyway. These questions are probably influenced by that 90s drama Life Goes On, which as you recall Corky, the son with Down syndrome, had a girlfriend. Answer if you’d like.

Chris - I also remember this TV show. It was one of my family’s favorites. There were times in Jr. High or high school, however, when I was with my friends, that I would make fun of the show. I have to admit, I feel a lot of shame about that. Any person with Down syndrome or a learning disability that I knew, I treated with respect. But how hypocritical I must have been when a friend did something silly, or dumb, or stupid for me to reference Corky or the theme song of Life Goes On. I can’t go back and change it, but I feel very shameful for anytime I made light of someone’s intellectual disabilities. Every day for the rest of my life, I will try to make that up to Alea as I feel like that let her down.

EIC - Don’t be too hard on yourself here, Chris. For people of our generation, Corky is a name we’re all familiar with, and we’re all not proud of using it the way we probably did. It’s like my good friend Oprah says, “When you know better, you do better.” She’s quoting Maya Angelou when she says that, so out of the mouth of two or more influential women, it must be true.

Looking ahead, what type of life will Alea likely have in her adult years? Will she be able to live on her own? You posted a YouTube video about a girl with Down syndrome who was planning for college. Do you see college as a possibility? Is that common?

Chris - Cindy, I will be honest, looking too far ahead scares me. There is so much unknown that I can get caught up worrying about. Right now we are dealing with some effects of pulmonary hypertension. Alea has severe sleep apnea. I know several parents who are dealing with so many more health issues than we are. One is dealing with leukemia; one is dealing with seizures; and another is dealing with diabetes and celiac disease, as well as Down syndrome. I could just make myself sick trying to worry about it all.

I have dealt with some pretty significant anxiety in the past. I still do on a daily basis. It is something I have to fight constantly, so I have to be mindful of the things I can control and the things that I can’t. Our plan for Alea is for her to be the best she can be. We see it as our responsibility to see to it that she reaches her full potential, just as it is with our other girls.

Jodi works tirelessly doing early intervention with Alea trying to get her skills to develop as quickly as possible. I do know that she is a very smart little girl and works hard to learn. I can also tell that she has social intelligence that is on par with where our other girls have been at the same age.

Long story short, yes, college is a possibility and it happens more than I ever realized. Our role is to help her get there if that is something she chooses to do.

I will admit, I catch myself wondering how we are doing with keeping her where she should be. There was a neighbor girl in our church that was born 10 minutes after Alea. When I see her in church it is hard for me not to look at her and see what she is doing: Is her head strong; can she grab toys; etc.? I have almost caught myself wondering how Alea is progressing in her development when compared to her little church friend. When I catch myself doing it, I try to stop and remind myself that Alea is Alea. She will be her best, and her best already is a blessing to me.

EIC - Will Alea be able to get married? Are there laws preventing those unions?

Chris - I am not aware of any laws preventing this. There is a movie out about a couple named Monica and David. It is about a Down syndrome couple that got married. I started watching part of it a couple of weeks after Alea was born and it was hard. There were challenges the family faced (it had nothing to do with the marriage) that I wasn’t ready to think about at that time. I need to go back and watch it now.

EIC - Are kids a possibility for Alea? (I think they are, because I saw a Law and Order episode once where a girl with Down syndrome was impregnated.)

Chris - I do not have information on this.

EIC - What is the common life span of someone with Down syndrome?

Chris - I have heard it is around 60-65 years. Part of me thinks I should do some research, while part of me doesn’t need to.

EIC - What are your hopes for Alea’s future?

Chris - I hope that Alea can do what she came to earth to do. Help those that need her. The other day I got home from work after a long week of work. I was not in a good mood. She would not take her eyes off of me. She followed me with these caring eyes wherever I was in the room. Her social awareness is such that if you look back at her she won’t keep looking in your eyes as there is that perceived un-comfortableness. We all feel it. That was not the case this night. She looked at me constantly with such loving eyes. I finally picked her up and she laid her head on my shoulder and gave me a hug. She has a gift to tell if someone needs help. I know she felt that I needed to feel of her spirit, and she made it happen.

We will parent her just like most would parent any child. We will do anything and everything in our power to give her the confidence, practice, and support to be the best that she can be. We love her and are glad that she is a part of our eternal family.

Next month: School questions.

Catching Up

I need to apologize for my lack of updates over the last little while.  I don’t know what Christmas did to me, but I have yet to catch up.  Both work an school mixed in with family have left me little time to blog.  I intend to do better.

A First Christmas

Our Angel’s first Christmas was  a special one.  I had forgotten the spirit a little baby brings into the home.  It seems to be even more present during Christmas.  EC and Keena were so cute with their sister wanting to show her all the sights, sounds, and traditions of Christmas.  Santa decided to get some DVDs for her to learn sign language.  These DVDs, called Signing Time have been a family favorite.  Keena and EC watch them regularly as we try to help our Little Angel learn to communicate.

Angel’s First Road Trip

We were able to go and visit family in Idaho over the New Year.  It was Little Angel’s first road trip.  She loved it, especially all of the attention.  With her oxygen machine, we had to go a little white trashish and put some luggage on the roof of our van.  Ironically I forgot a piece to the oxygen machine so we had to track down an Idaho branch of Praxair.  They ended up just delivering oxygen tanks to get us through the trip, so we went all cousin Eddie for nothing.

My dad taught the kids a game he used to play with us as kids.  It is called “Fox and Geese”.  They all had fun.  It was a wonderful chance for us to go and visit family.a

Game rules:  Fox and Geese - This game is played after a snowfall. First the snow is tramped down in paths to make a big wheel with spokes and a hub in the center. One player is the Fox and the rest are the Geese. The Fox tries to catch a Goose (who then becomes the next Fox). Players must stay inside the paths. If a Goose steps off the path, that Goose is caught. The only safe place for a Goose is in the center (hub). But only one Goose is allowed to be in the center.

A Christmas Present for Austin

While we were in Idaho we ordered a Christmas present for Austin.  We just got the proofs.  There may be some minor changes, but we are anxious for the ground to thaw so it can be placed.

Updates & Milestones

• Little Angel’s pulmonary hypertension seems to be better.  We have an appointment with the pulmonologist on Friday for an update.
• She does have severe sleep apnea that requires oxygen at night.
• She has acid reflux that which complicates the apnea and the pulmonary hypertension.
• She has grown so much.
• She can use both hands to hold things.
• She reaches and grabs rattles and toys very well.
• Just recently she has learned to reach and grab with both hands for something right in front of her.
• She loves her play piano exersaucer.
• She can sit in her bumbo.
• She has started eating rice cereal and baby food.
• She has started laughing.
• She still sleeps through the night.
• She has become pretty social and looks when you call her name and smiles a lot.
• She easily rolls over on her own.
• Little Angel communicates very well.  Keena was paying the piano about a month ago and when she would stop, Little Angel would start whimpering until she started playing again.  She did the same thing watching signing time with me this morning.

From our Editor in Chief

By Cindy Fisher
I have often wondered whether my marriage could survive having a child with special needs. It must be a strain on a family. However, when I heard that Chris and Jodi had Alea, this is going to sound weird, but it felt right. If any family was going to be able to help one of God’s choices spirits, it would be the Garners. They are such positive people, and they have two older girls who could be of great comfort to their parents and little protectors of Alea. I can already see the older girls ready to go to battle against any other kid who may say something mean to sweet Alea as she grows older and enters school.

Maybe you’re like me, and basically the only exposure to Down syndrome you’ve had has been seeing a Down syndrome child in the halls of the public school you attended or through a movie or television show.
These next set of questions are harder to ask, and probably harder for Chris to answer.


How long after Alea was born did you realize there was something different about the way she looked? Did you suspect it was Down syndrome?
 
First of all Cindy let me thank you for the kind words.
When Alea was born it was kind-of chaotic in the delivery room. Right after she was born I went to take her picture and realized that we had left the camera in the car. I ran out to get it. I returned to snap the picture and found the nurses all busy around her. They were worried about the way she was breathing. I snapped a picture, and they rushed her out of the room.
I made sure Jodi was okay, I then went down to check on her. I walked in the door to the nursery and walked over towards her. Her head turned towards me, and she opened her eyes. I knew right then. It wasn’t super obvious, but it immediately entered my mind; “She has Down syndrome.” I asked the nurses if everything was okay, and they confirmed that it was. I dismissed the thought that had entered my mind. 
 
It took them a week to confirm it. When I would go in to see her in the hospital, I would talk myself out of her diagnosis. It is kind-of silly looking back on it now. I would tell myself that her eyes were still swollen from delivery (which they were). I would tell myself that since she didn’t have the simian crease in her hands she didn’t have it. It was an interesting week mentally. I fought those thoughts even though I knew full and well I loved her beyond measure.
 
Take us through those moments after you were informed that Alea had Down syndrome. Was it similar to a grieving process: Denial, anger, bargaining, depression, and then acceptance? Have you found that your mind goes through this cycle many times, even now? 
 
Jodi and my mom had gone to see Alea at the hospital before my mom went back home after helping us for a few days. They walked in and Jodi was on the phone with someone. My mom had that look on her face. The look you get after hearing bad news. I asked her what was wrong, and she just looked at Jodi and said Jodi could tell me. I asked Jodi to get off the phone. It seemed like it took her forever. I asked her over and over. In reality it was probably a minute, and I was probably a little rude. Once she got off the phone, she told me the nurse practitioner had told her it was time to just accept the fact that she had Ds and to move forward. The results weren’t back, but it was time to accept it. She said there was certain care that Alea needed, and they couldn’t move forward with it until we understood and accepted that she had Ds. The way we were told still bugs me a little, especially because there never was any change in her care or urgent procedures that needed to take place.
 
I felt fear, I guess. Anger probably. I know I was angry at the nurse practitioner and I channeled all of my anger into that. My frustration was evident as I asked my mom and Jodi how they could know without the test results. At that point EC came in and asked what was wrong. When we told her she said, “So. I will still love her.” I then went to my room and cried for a few minutes.
Soon after that I had to take my mom to Salt Lake to meet my brother who would be taking her back to Idaho. After a while of driving in silence, I hit a point that embarrasses me the most looking back. I said to my mom, “At some point the Lord needs to figure out that Jodi has been through enough.” Ugh. So ya, I guess you could say I was mad.
I don’t really liken it to grieving, although it probably is the same. After the initial 24 hours or so it wasn’t a constant process. There were moments where it would hit me, and I would feel that fear or worry for Alea, but they were only moments. I still worry for her, but it is different now. Not sure how to explain.
 
In a letter I wrote to my family I said, “The hardest thing for me with this diagnosis, is that people may feel sad or sorry for us.  This is not the time for sorrow; we have had our share of sorrow. This is a time to celebrate this new life that has come to our home to teach us to be more Christlike.” We deal with grief on a daily basis for people who are no longer with us, so maybe that is why it is difficult for me to compare the feelings of uncertainty we feel with Alea to feelings of grief.
 
Who did you seek out first for emotional support after learning about Alea? 
 
I sought out Jodi. She is such a strength. After Jodi, I probably sought the advice of my parents. I have been that way since I was young, and they always have sound advice. I have been blessed with goodly parents.
 
Tell us about some of the people who have helped you look at the situation in a new light, or who has been a guiding help for your family? What has been some good advice or counsel you have received concerning Down syndrome? What new insights have you had that you could share with us?
 
This is a difficult question to answer. It amazes me the immediate support we received and continue to receive from other parents with children who have Down syndrome. I have a cousin who has Down syndrome. I called my aunt or she called me in the days soon after Alea was born with some sound advice. Everyone who has experience from similar situations has always said that these kids bring so much joy.
 
It is like anything that is new, though. I served a two-year mission for the LDS church. I remember getting out on my mission with the other 180 young men and women assigned to Belo Horizonte, Brazil, with so much energy, excitement, and perhaps unrealistic expectations. Others who were more seasoned looked at me, I am sure, thinking, “He will learn.” Plato once said, “Wise men talk because they have something to say; fools, because they have to say something.” Being a new parent of a child with Down syndrome, I worry about being in that stage where I have to say something. The entire purpose of this blog is to raise awareness for Down syndrome, but I do worry that those seasoned parents are wondering if I just have to say something. 
 
As far as enlightenment, I think I have gained the most from my ever-evolving world view. As a member of the LDS church, we believe that kids with special needs are God’s most choice sons and daughters. If you stop and think about it, that is quite an honor. I have also been working on a master’s degree for the last year and a half in mental health counseling. The program has helped me be more accepting of all people and of my circumstances, whatever they may be. There have been two books I have recently read that have helped improve my world view. Both Ekhart Tolle’s The Power of Now and Michael Robinson’s Believing Christ have influenced my thinking about the life that presents itself to me each day.
 
What statement or expression do you wish people would NOT say to you when they learn your child has Down syndrome? What generally was people’s reaction when they heard about Alea’s condition?
 
“Oh, I am sorry.” That is the worst reaction. For some reason at first I hesitated to tell people, because I was afraid of their reaction. I am not that way now. It will be a challenge for Alea, but it is not something she did wrong. It doesn’t make me mad that people say that; they are doing their best, and I know I didn’t know what to say. For the most part, people congratulate us and cite an experience or two of the wonderful interactions they have had with people who have Down syndrome.

Happy Birthday Austin Terry Garner

I started this blog as we began our physical and spiritual journey with Alea, the angel that came to our family on August 14, 2010.  We began a spiritual walk with another angel, our son Austin, on November 30, 2007.  He was born with a lethal abnormality and was only with us for 2 short hours.  I cannot describe the impact these two short hours have had on Jodi, Keena, EC, and I.  It has changed our spiritual outlook on life as well as increased our testimony that families are not just until death do us part, they are eternal.


I truly believe that one of the reasons we were given the blessing of having Austin was to prepare us for things that would came our way over the last 3 years.  Through Austin, the Lord has shown us that He is mindful of us, and that He will take care of us.

I have wanted to introduce Austin to the blog for sometime, but haven’t been able to decide how to do it.  At the time Alea was born, many would tell us that our family had been through so much.  I must admit, even I had thoughts and feelings about how much Heavenly Father would continue to ask Jodi to bear.  I did not want to add this perception to those who came to this blog, but did not know our story.  I wanted to use this forum to create awareness for Alea and Down syndrome.  I wanted to show people that Alea is as much a blessing to us as our other daughters have been.

With that being said, it is hard to share the complete walk with our angel, without including our angel that waits for us in heaven.  One thing I do not want this blog to be, is a typical mommy (daddy in my case) blog.  Jodi and I are both optimistic people, but that does not mean that challenges have not been hard.  As they have been hard, they have unified our little family in a way that cannot be described.  I am in awe of the spiritual maturity my older two girls have, and I credit that maturity to the lessons the Lord has taught them through our adversity.

I have decided to share a personal letter I sent to my family 3 weeks before Alea was born.  We had no idea of the unique opportunity Alea was waiting to provide us with.  The Lord did, however.  As you can see from the letter I sent to close family and friends, He wanted us to know that He is God, and He is with us.  The miracle you will read about did not make complete sense until Alea’s diagnosis was confirmed.  Indeed I am grateful for His mindfulness of us.

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Letter Written July 22, 2010:

I thought I would take a moment and share a tender mercy that we experienced this last week.  As most of you know, Jodi and I lost our son Austin 2.5 years ago.  Due to a lethal abnormality, he lived only 2 short hours after being born at 22 weeks.  I recorded the details of this experience on my blog if you are interested [It can be found on this blog on the Angel Austin page].  

At the time [of his passing], we decided  not to bury him, and to have the hospital take care of his remains for us.  Looking back, this has been a source of regret for both Jodi and I.  It is definitely something we wish we could go back and do differently.  This regret has increased since Jodi lost her dad and brothers in a plain crash last year.  It weighed especially heavy on us since Memorial Day.  We wanted a place we could go visit his remains and memorialize him.  I don't think that this desire was just between Jodi, the girls, and I, as a few extended family members expressed these feelings after Memorial Day.

On Thursday of last week, the U of U hospital called.  I am still not clear on the details of why, but they told Jodi that they still had Austin's remains.  They have started a program where they would place him in a cemetery in SLC with a nice marker, or we could come get his remains and bury him where we wanted.  We have decided to bury him with Jodi's dad and brothers. 
What a blessing!!  It has brought much joy to our household.  We will be holding a graveside service for him in Idaho.  Depending on what Jodi's Dr. says about her traveling it will either be next week, or about a month after the baby comes in August.

This has been a true testimony builder for me.  I know that God loves each and everyone of us.  I know he is mindful of our situations and that he knows how to teach us and humble us if we listen and do our best to follow him.  I debated whether to share this over email, but I really wanted to share it with those of you that have supported us over the last few years.

Love, Chris

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It should be noted that Jodi was inspired to go to Idaho and have the service before she had the baby.  If we had waited until after, Alea’s health would not have allowed us to do this until probably next spring.  How grateful for a wife who listens to that still small voice.  Happy Birthday son, we are thankful for all you are to us.  We continue to work so that there will be no empty chairs in Heaven.

Below are some pictures from the service held 7/30/2010.