Christmas letter to Landry

Dear Landry,

Merry Christmas little angel!  Dad was so busy this fall building new corrals that he almost missed getting the lights up.  He finally got them up to tell you Merry Christmas.  We hope you enjoy them again this year.  We added an angel to the collection of lights this year and it reminds me of you, our angel in heaven.

This year our gift to you still hasn't been sent because there were so many worthy causes to chose from.  Since it is in behalf of you, it needs to feel just right.  Today we finally felt right about who the gift should go to.  His name is Cooper, he is 2 years old and has SMA.  He has been in the hospital and was even there for Christmas.  Our hearts break for Cooper and his Mom, not only does he have SMA and has been sick, last week his Dad died in a car accident.  I am sure his special Daddy is up there with you now.  We would like to give Cooper and his Mom a little Christmas cheer in honor of your name even though it will be late.

We are so grateful for you being a part of our family.  You weren't here very long but you sure made an impact on our family that will last forever.  Your sweet little determined soul will never be forgotten.

My arms ache to hold you again, but I know you will stay near and watch over us; helping us get back to you and our Heavenly Father one day.  How grateful I am for His plan of salvation, knowing that I will see you again and knowing where you are and that you are taken care of.

Lots of Love

Mom



We never got to spend Christmas with you so I had to add a little Christmas to you!

Merry Christmas little man! We love you and always will.



Remembering Daniel

Dearest Daniel

Our hearts are saddened for your sweet mom and dad knowing that you are no longer here with them.  Even though you are in heaven please stay near them and help them along the journey of life that they still have to endure.  We know you are happy and free from this world and that you are playing with all the other little angels in heaven.

We always wanted to meet you in person but it never happened.  You were such a sweet boy and it showed in the many pictures we got of see of you.  Owen loves seeing your pictures, they always make him smile.  You seem to make everyone smile.  Thank you for all the smiles and kisses you sent from afar.  You will always be in our hearts because you are so dear to our family.  We will never forget you and what a strong little boy you were.  I know that now you are a perfect angel and will never suffer again!

Because of you, Daniel, we vow to always try to be better.  When Owen was still in the NICU at Primary's he received some cute balloons and the tag read: "Hang in there, Buddy! Your friend Daniel".  I know you had some help in sending those balloons, they made our day, not just Owen's.  Because of those balloons and sweet gesture we send balloons to children during their stay at Primary's.  I hope they make their day as your balloons made ours.

You fought a hard fight and did it with a smile!  You are loved and missed by many.  We pray for your family that they will feel the Lord's comforting love as they mourn their sweet little boy.

We may never see new cute pictures, but we will remember you each time we see a sunset.  Keep sending your love, smiles and kisses and we will be watching and waiting down here.

Lots of love,
The Johnson's
Lenn, Gayle, Bentley, Abby, Owen and angel Landry

Always near my heart

I wear my Landry necklace whenever I leave the house....I love it!

I received this in the mail 2 1/2 years ago from someone who chose not be known.  How grateful I am to this person.  Wearing this Landry's charm reminds me that he is never too far away.

I am so thankful for all the great people that have blessed my life in many ways.

How thoughtful you have been!  We have received anonymous gifts and they have been so nice but I hate not being able to thank who they came from.  If you are one that has sent one of these gifts, thank you very much for your love and thoughtfulness towards my family.

Another tender mercy

Unbelievable, two years ago I had this picture on my phone.  I took this during his car seat trial before we could leave the hospital.  I thought it was just the cutest picture.  He was so precious that day!  Lenn dropped me off to do a checklist of things before we could take Landry home.  I guess Lenn figured he passed all the tests with Owen and didn't need to repeat them!  So he left me there, which was fine by me but it is funny the things that bother you.  I look at this picture and remember how when Lenn left he took all Landry's cute blankets with him, so all of his take home pictures are with the lovely hospital blankets!

I am sure I am crazy, but that is what I thought of after seeing this picture again.  But the tender mercy with this picture is that 2 years ago I was watering lambs and my phone fell into the water bucket!  I tried to dry it out but no luck!  It was ruined.  Then this last weekend my darling older children accidentally locked my current phone so I was looking for an old one to use in its place.  I turned this old phone on just incase and crazy enough it worked!  I hurried and got this picture to my email before it decided not to work again.

I just love this little guy!!

Missing him

I've been missing and thinking of my little Landry a lot lately. 

I saw this saying and thought it was perfect for my little guy.



Tender Mercies

I guess Landry wanted to be part of Owen's Make A Wish trip too!  We saw this restaurant and even though Bentley, Abby and I aren't huge seafood fans we decided we had to go there.  I thought the food was great, Bentley and Abby weren't so sure.  I don't think they would be fans of returning in the near future!  Lenn loved it and called us all a bunch of chickens because we all ordered some type of shrimp.  He claims we can get shrimp anywhere.  Which he is right, but new things scare me especially when I don't even know how to say the name of what I am eating!

It was fun and I am glad we ventured out. 

Cute little gas pump.  I wanted to bring this home with me.

It is crazy how the Lord puts little things in our day to help us out.  Even though it is just the name of a restaurant it somehow made us feel a little closer to our little Landry.

Landry's second angel day

This year this day came so fast and I really didn't have anything prepared.  I wanted to do something like last year with donating baskets to the Logan Hospital NICU, but I didn't get it together.  Instead, we donated to a family and I hope that it will help them in the desires to have a healthy child.

We decided to go to the temple that day.  It was a beautiful, nothing like last years blizzard! 

 Abby, Lenn and Bentley on Lenn's bench at the cemetery. 

(I'm not sure what was going on with the strange tint.)

 I read about a family having a halo toast and I thought it was a fun idea.  We got donuts, told one of our favorite memories and then toasted Landry.

 Reflecting

Lenn and Bentley found this dragonfly pinwheel while grabbing a few groceries.  It is perfect!  Lenn and Abby also found another angel statue kneeling.  I love this picture.  As I was looking through all of the pictures of the day this one stood out, with that bright glare I can't help but think Landry was sending a little of him down for the day.

We now call this Landry's flower.  It has bloomed on his angel day the last two years. 

Last year it even bloomed in the snow.  Just a little tender mercy sent to us.

A little info.

This is a total self diagnosis but a few months ago on the SMA network (like facebook for SMA families) I saw a little boy with type 0.  I had never heard of it before but this little boy sounded so much like Owen and Landry.  I tried getting information from a doctor but never heard back. Today I thought about it again and googled it.  This is what I found.

"Three types of SMA affect children before age one year. Type 0 is the most severe form of spinal muscular atrophy and begins before birth. Usually, the first symptom of type 0 is reduced movement of the fetus that is first seen between 30 and 36 weeks of the pregnancy. After birth, these newborns have little movement and have difficulties with swallowing and breathing."

After Owen was born and we were in Primary Children's NICU we got to answer question after question at least a dozen times for each doctor.  I told each one of them, that my pregnancy was normal until about six weeks before I delivered.  Most of them just blew it off as if I didn't know what a healthy baby felt like.  In fact Owen's records are still wrong because I finally gave up the fight of trying to get them to change them. 

Owen and Landry were both super active until the last, which I know can be normal but they slowed down before healthy babies do.  Landry was so active that he had the cord wrapped around himself numerous times.  One doctor said "that tells you he was an active baby" as we were trying to have hope that he would 'snap out of it' and be healthy.

I know many of you wonder, as we do, about Owen and Landry so I thought I would share the information I found.  I will keep you posted if I find anything more.

I remember the days that I realized the baby inside was not moving.

Owen

Landry

Landry's Birthday 2012

Landry's Cake

Landry's birthday came and went again this year. I felt more like we were celebrating his part in our family rather than being said that he is gone. I am grateful for the knowledge that I have that families are forever and we will see him again.

The cemetery

We took a drive to get lunch, balloons and look for a dragonfly. Lenn and the kids found this cute dragonfly with a solar ball beneath it.

Bentley and Abby love to run to the fence and back with the balloons before they let them go.

It was pretty chilly and windy so Owen stayed in the van and enjoyed watching his ipad.

We had a good day celebrating our little angel!

For Landry's Birthday

Landry's 2nd birthday is coming up and I want to do something for someone else. For me it helps get through the hard days when I am thinking of someone else. This year I want to do what I can to help this family. There little boy Keeynn was one of Owen's NICU neighbors. He passed away shortly after Owen left the hospital. Later they had a little girl, Kyla Kynn, she passed away too. They were born with a genetic mutation and their little bodies can't produce the needed surfactant for their lungs.
My heart goes out to this family, they would love to be able to have a healthy child to love and raise.
For Landry's birthday I am going to donate to this family in Landry's name and invite you to do the same. They have an online donation center, or if you aren't very online savvy you an send it to me and I will send it on to them. Every dollar counts, if you think your donation would be too small think again because every little donation adds up to something big.
Please feel free to share the link to my blog to spread the word.

http://www.indiegogo.com/Genetic-Mutation?i=wdgi

How the dragonfly came to be!

This is how far behind I am with blogging, I took these pictures last July.

This dragonfly was right outside our backdoor when I noticed it (it was huge). I immediately thought of Landry. The funny thing is, is that his dragonfly hung out there in the same spot for the whole afternoon. When I showed it to Abby she said, "I guess Landry wanted to come visit." I agreed. We love dragonflies now and think of our little angel whenever we see one.

Now, why a dragonfly?

One evening a good friend called and said, "hey I wasn't going to tell you, but I put a solar dragonfly at Landry's grave site and I forgot to turn it on." How thoughtful, but I didn't realize how much it would mean to us until we started seeing dragonflies everywhere and they were a constant reminder of our little angel. They make us smile and remind us that he is never far away.

Now the really crazy thing is that Landry would be turning two years old at the end of this month. It is unbelievable to me! It seems like forever ago but it also seems like I was just pregnant with him and preparing his arrival. I miss my little Landry so much but I know he is hard at work in Heaven. I also know he will never be far from us and he will always be cheering us on to make it back to him.

I am not as prepared for his birthday as I was last year as far as what to do, but I have an idea so you will have to stay tuned because my idea might take all of you to pull off so be prepared.