5K Awesomeness

The 5K was a fantastic success!!!  Thank you to everyone who came, and to everyone who supported it.  It was wonderful to finally meet The Weimer's (Lana and Ryan are simply amazing) and their wonderful little boys.  (Bryce, you little Casanova?  You stole my heart).  These are just a few of the pictures from the 5K. Once the photographer is done editing I will post more :)

 

A Father's Heart

"Our little family is good.  Everyone is as healthy as life allows, and we are being well taken care of by our Father in Heaven.  How I love and appreciate how much my Father in Heaven looks out for my family.  I have a job, and we live comfortably. How grateful I am. Ahh (deep sigh). 
You know when your children have a disease where the prognosis is you will likely watch them die, your heart is never fully free to not live in fear.  To not live in the fear that one day you will experience heart wrenching pain, and anguish.  As deep down as you try and bury the knowledge that you will experience a loss that burns throughout your life, it somehow manages to remain near the surface.  
I love my boys.  I love and miss my sweet Princess Addi.  
I love my children.



I think lately Keaton is beginning to understand his unique situation, and his physical limitations. More now then ever before he says how he wishes he could walk.  I had the privilege of helping him get off the toilet and clean his bum and I said to him. “Shoot bud how are we going to do this when you are HUGE!?” Keaton responded directly and without any apparent fear, “Well, I probably won't be alive.”
Like cold, frozen daggers piercing my heart I saw in Keaton the knowledge of his mortal and compromised body.  What child do you know that doesn't respond with "when I grow up?" to simple questions about life? Without us really ever talking about it, Keaton knows that his version of growing up is very different.  I asked him, “Pal why do you think that? Why'd you say that?”  He said, “Well Dadda, people that don't walk probably don’t live long.” 


My heart sank like the Titanic hitting cold reality knowing that my son knows about his mortality.  If I didn't have a testimony I would be able to say to you, and look you in the eyes, I cannot go through losing another child.  If I had a choice I would not.  I would get lost in some drug induced coma and end up floating off the shore in Vietnam.  There are days where all I want to do is crawl into a hole, disappear, and cease to exist or feel.  But alas I am asked to carry on.  To move forward, firmly holding to that hope in Christ.  
So I will, for in Him will I find an eternal reprieve to sorrow and loss, a reward for standing up and walking on." 


-Ryan Weimer

Time for Weimer 5K

Hello everyone!  Reminders here.  The 5K is in less than three weeks, and we need to have the shirts ordered by August 1st so the screen printing company can have them done by 5K day.  If you have not yet registered, or if you want a shirt and have not yet asked, you MUST do so before August 1.
We are sending in the order on the 1st, so if you wait too long you may not get a shirt.  Thanks to those who have registered and donated, and we will see you in a few weeks!

Email timeforweimer@gmail.com if you have any questions.

For Addi

There isn't much that can be said when it comes to losing a loved one.  Especially if that loved one left far too soon.  I asked Lana to send me some info on Addi.  I didn't know her while she graced this earth, but from stories and pictures I feel a part of me will always belong to that sweet little girl.
As a mother, it is difficult to express what is felt when you think of your children.  A mother always knows, or so goes the saying.  We are meant to kiss away hurt, to lift, and to hold.  The following entry came from what I am sure are the deepest, and most sensitive parts, of a soul.  Dear, Lana?
You are indeed a woman made of something stronger.



"The other day, after Keaton went to school, I heard an ambulance and fire truck outside.  When I looked out the window, sure enough, there they were parked in front of our neighbors home.  I became suddenly sick, and my heart started beating faster as the events of the morning that Addi died came rushing back into my mind.  Then?  I cried.  It was the worst day of my life, and those sirens will forever bring it back to my mind.  Addi had been sick, and came to me and said, “Mama, I need to throw up.”  I tried to calm her, and when she did throw up, bile from her stomach came out.  When that happened, she couldn’t breath.  I told her to relax and try to breath.  She muttered an “Ok” and I said, “don’t try to talk.”



She tried to breath, and I tried to calm her but to no avail.  She began to suffocate while I tried everything I could think of to save her.  I did CPR until the paramedics came.  When the paramedics arrived, I had hope that they could somehow save her.  I took Keaton in the other room, so he didn’t have to watch anymore, and I said a prayer with him pleading that she wouldn’t die.  I hoped against hope that they would be able to save her. 
They rushed Addi to the hospital, and we followed.  When we arrived the doctor told us they did everything they could.  "She is gone," he said.  Gone."

"It still hurts to remember that day, but I will always remember Addi.  I will always love her, and I know she will always be with me.  I am grateful for that, and I am grateful for her.  The day she died was the worst day of my life, but while she was here she gave me many of the best days.  Those are the days I hold on to the most because those are the days that really matter."

Just Being Kids

Who doesn't love camping?  And kite flying, and swimming, and eating s'mores.....
Oh, to be a child :)
http://www.youtube.com/watch?v=SoRllfVz-DQ

Shirts

Hello everyone!  The 5K is drawing nearer, and we have finally finished the shirt design :)
Registration for the 5K is open, and donations for the Weimer family, as always, are welcome!

Front

Back

As previously stated, if you cannot attend the 5K, but would still like a shirt, please email timeforweimer@gmail.com.  Thanks everyone!

Memorial Day

Remembering loved ones.

And loving those still here

Keaton Loses a Tooth!

Who doesn't remember this feeling?

http://www.youtube.com/watch?v=17j0sDmJ-1s

Divine Intervention

There have been some who have asked me, "How do you know Lana and her family?"  Truth be told?  I do not.  Not extremely well, anyway.  Not yet.  Whether one believes in it or not, I find the only phrase fitting to describe how Lana and I came into each others lives to be this; divine intervention.  Lana, her family, and their story inspire me to degrees unexplained.  In this life there are many, families and individuals, who struggle with different trials.  Life is filled with trials; we face them, and in most cases, overcome and accept them.

It is in such a trial that Lana has been gracious enough to tell me her story.  To share pieces of her world, pieces of her family, and in turn, some of the deepest feelings of her heart and soul.  The Weimer's story is one that needs to be shared; it needs to be heard.  I myself had never heard of SMA prior to seeing the youtube video Lana posted.  I never knew the impact it has on so many children throughout the world, nor could I have ever imagined what so many families endure when dealing with the disease.  It has been said that ignorance is bliss.  There is no bliss within this ignorance.  There is no current cure for SMA.  SMA needs to be better understood.  The fight for a cure against cancer is nearing daily because everyone knows about it, and people are doing things to help.
SMA must follow suit.

"Sunday a woman sitting by us asked me how old my baby was.  I told her he is 5 ½ months old.  She said, “Is he crawling?” and I responded, “No, he hasn’t been able to crawl.”  Honestly, I never know when to tell people more.  Do I tell them that my baby will never crawl?  He will never walk or even roll over because he has a muscle disease.  When do I just leave it with a short simple answer? 
No matter what I say, I am always left thinking.  
I think about how we are different, how much I love my kids, how amazing they are, and how sad it is that they cannot do what most kids can."

"Many times, especially when I was pregnant, people would ask, how many kids do you have?  That is another question I struggle with.  How do I respond?  Sometimes I say four.  Sometimes I say two.  I feel like I have four kids, I know I do, but I have two kids at home now.  I had four, and knowing there are only two now is a feeling I don’t believe I will ever get used to."


-Lana Weimer

Share the Weimer's story, and help the world understand.

5K Update

A lot of people have been asking about the 1K associated with the 5K for the kids.  It is free as long as someone within your immediate relation is a participant in the 5K.  The 1K follows a pathway that surrounds the park.  It will not be as organized as the 5K, but the access will be there for families with children in strollers, or wheelchairs.  For example, dad wants to run but mom doesn't and wonders what to do while waiting?  Mom can do the 1K with the kids and wander around, enter the raffle, and listen to live music.  Sorry for any confusion!  And KEEP REGISTERING!  Thanks, everyone!

Time for Weimer 5K

We are hosting a 5K Run, Walk and Roll for SMA and the Weimer family on August 11 of this year, 2012, at the Heritage Park in Farmington, UT.  Anyone is welcome!  There will be a shorter 1/2 mile loop for the little ones, and any adults that don't feel like running 3 miles (wink!).  We will have live music, hosted by the wonderful Karlie McKinnon (see this link http://www.youtube.com/watch?v=ZKHQHJfv4o8 ), as well as food and prizes.  Registration for the 5K is posted to the right, and all registration is done through active.com.  We will be making shirts for the event, so if you cannot attend but would like to order a shirt, please email Jessie Cloward at timeforweimer@gmail.com.  Any question/concerns may also be sent to that address.  Thanks everyone!

What is SMA?

Spinal Muscular Atrophy is a motor neuron disease that can present itself anywhere from birth to early adolescence, and in rare cases adulthood.  The majority of SMA cases are reported between the ages of 6 months, and 3 years of age.  SMA affects the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing.  It is the most common "rare disorder" in children, and the number one cause of death between birth and age two.  Approximately 1 in 6000 babies born are affected, and 1 in 40 people are genetic carriers.  Sma affects muscles throughout the body, though the muscles nearest to the core are most affected (ie shoulders, hips and back).  Weakness in the legs is generally greater than in the arms, and feeding/swallowing can be affected.  When the respiratory muscles become involved, it can lead to increased risk and tendency for pneumonia and other lung problems.  The ability to feel and sense are not affected, and intellectual activity is observed as normal, or above average.  Patients are usually grouped into one of four categories.


For more information, see www.curesma.org.

Time is Running Out

"When our oldest son, Keaton, was 6/8 months old we could tell that he was weaker than he should be.  At 11 months he was diagnosed with SMA.  It is a horrible feeling to find out your child has a life threatening disease. When I became pregnant again, with Addison, we were able to get an amniocentesis to find out if she would have SMA as well.  The test was positive. We knew there was a 25% chance that each child could be born with SMA, but we hoped that the 75% chance of a healthy baby would win.  It didn't.
When we found out I was pregnant again we were nervous and excited.  We went in to get another amniocentesis and found out right away that although the baby did not have SMA, he had another disease called anencephaly and would not survive after birth.  I carried the baby, Eston, full term.  He was fine while in my tummy, but he died the day he was born.  We got to hold him for a little while before they took him away, and when they did, there came an emptiness and heartache that cannot be described.


Keaton and Addi continued to grow and fill our lives with joy, but Addison started to have trouble eating, and needed a feeding tube.  We thought that would help her to thrive, but her body didn’t take to it and she threw up a great deal.  She got very sick and was scheduled for a surgery to help her body accept the feeding tube.  She didn't make it long enough.  
Addi died one week before her third birthday.


Soon after Addi's death, my husband and I knew we wanted to have another baby, it felt right to us.  We knew the chances, but hoped that this time the 75% would win out.  We thought, "surely we will not have another baby with SMA."  The odds were still against us.
Our baby Bryce is 4 ½ months old now, he is a healthy chunky baby, but already showing weakness.  Keaton is 6 and every time he coughs or anyone around him coughs we tense up and feel so much stress.  We want to dedicate all of our time to keeping him and Bryce happy and healthy.
We love these babies so much, and losing them is very nearly more than we can bear.  Please help us spend as much time as we can with them while they are with us."


-Lana Weimer