It's finally time.....

 Abby finally decided her hair was long enough and it was time to cut and donate it! 

Here it goes!

 That should make a great wig for someone.  Good job Abby, I sure love your giving heart!

 

Today was pioneer day for Abby at school.  She has been so excited for this day and then she got picked to wear one of the dresses!  She thinks this is the coolest dress ever.  Then Uncle Bill was over last night and told her some stories of pioneer ancestors for her to share in class.  She was stoked when she left this morning with her pioneer lunch and all!

Not sure the pioneers ever got to wait for a bus ride though!

Talking candid...if we must!

The last few weeks have been hard, emotionally and mentally!  About a week and a half ago we went to Primary Children's for Owen's yearly appointments.  He doesn't like going to say the least, and the first one we saw was even a favorite.  She has been an angel for our family, but Owen was not happy, maybe even throwing a little fit ;) (I don't blame him).  The doctor said "okay things don't look great let's talk candid if we can".  Lenn and I just looked at each other and wanted to make a mad dash for the door.  Since we couldn't leave Owen and the doctor was in front of the door we had to stay!
I turned to Owen for strength and he was still so upset.  He was red faced, even running a slight temperature, clammy and COLD!  I could see where she was coming from but I like to speak candidly with close family and friends usually over the phone or computer where I can hide a little.  Some people like to wear it out on their sleeves but I would rather cry in my own little corner all by myself.  We talked for a few minutes about Owen's future and how he might have days, weeks and maybe months.  We have heard this over the last 2-3 years and he is still holding his own.  Although I do believe his little body has done about all it can.
After she asked us to speak 'reality' we wondered if we were putting on too much of a 'public mask,' that others really thought we were in lala land and that everything is grand! Oh dear no!  Maybe before Landry came and passed away, but since then we KNOW the reality we are facing with Owen.  We don't love it but we can't change it.
We are always asked 'how is Owen?'. Our reply is 'good'.  We aren't lying to you, we just don't want to explain the whole situation each and every time, so please forgive us.  He is as good as he can be and we choose to look for the positive rather than the doom and gloom.  But here is our reality as we know it:

Owen will pass away one day, long before we could ever be ready!  We feel each day is a day on loan to us.  There is already a headstone in place.  I don't love the reality of that, but I do love the headstone.  It is perfect for our boys and having them together helps in a way, I guess.  Knowing that they are brothers and they will be together.

Owen is thin!  Oh my goodness he gives new definition to skin and bones.  But there is nothing we can do about it.  We have tried numerous times to up his calories but his little body just can't tolerate it.  We are giving him all that he can tolerate and still be happy.  He is 5 years old and weighs as much as he did at 9 1/2 months old.  Yes, that one hurts!!  Thank heavens he was a chunky baby!
 

He is happy!  He still smiles and gives us looks with his beautiful eyes.  We feel like as long as he is comfortable and smiling we are okay.  If he does become uncomfortable and miserable then we will have to muster the strength to take action and help him on his way to heaven.
We pray that it will not come to that.  We hope that when his mission here on Earth is done that Heavenly Father will take him on his own without us having to make that horrible decision that so many loving parents have to make.
There is the harsh reality.  Maybe I keep it to myself because it is so emotionally draining to think about losing my son all the time.  I am trying to enjoy the little things and I remember hearing a mom once say, 'I have all the time in the world to cry after my baby dies'.  I have shed my fair share of tears but I'm trying to be happy while he is here.

After his fire truck video on his ipad and at the end of all the appointments this is what he looked like, much better!  I sent it to his doctor and she was relieved to see his smile back on his face.
For now we will enjoy each of these smiles and try to feel his special spirit that he brings to our home.  We love our little Owen and can't imagine the day when he is no longer here with us. 
We realize things are going down hill for Owen but we are taking it a day at a time and that is about all we can do right now.

Thank you for all your love, support and concern. 

Today I blog!

I know it's been awhile since I have blogged!  I have had so many things that I have wanted to blog about but I haven't made time to sit down and do it.  I am not sure what in the world I have been doing!!  It is time for some serious catch up, I will see what I can do!

Today I had that feeling to blog again so I thought I better share.  Today in Relief Society our lesson was on service.  I always feel so guilty for not commenting or sharing my thoughts on this subject.  I hope my ward doesn't take that as being ungrateful.  I have a really hard time sharing comments that are so connected to emotions.  I get emotional and things go downhill in a hurry, so I do apologize.  I wanted to share my feelings here about service.

The last 5 years we have been served in so many ways.  It's hard to even make a list because I can't name them all.  Owen was born late at night, early the next morning the service began.  We were getting phone calls of love and support, our ward was fasting for our family and visitors began traveling far to come show there love.

Even though I was deeply horrified(but very grateful), friends came and cleaned the house and did laundry.  I was so grateful for their acts of service on our behalf.  They even cleaned out the fridge, yikes!  Cards, letters and money started coming in the mail.  I tried to keep up on thank you notes, but there were so many I couldn't in my current frame of mind, again I am sorry.  Thank you!

Our ward and friends insisted on doing a benefit and auction for us and our families and communities we grew up in quickly jumped into help.  Our benefit was one of the most humbling experiences I have ever felt or witnessed.  I don't believe I will ever have the words to describe my gratitude to all those who put it together and then donated so generously.  Thank you!  Thank you!

Bags of goodies and games were brought to the hospital for us from friends in our past and current family and friends.  Homemade bread with a can of soup from another NICU mom meant the world to me.  Thank you! 

A youth group came and helped us clean up the yard after being gone for so long.  They DIDN'T even know us!  I never heard one complaint for working in the heat.  Those kids were incredible!

When Lenn was gone for 9 weeks in Texas I had friends and family literally take care of us!  One friend would do all my grocery shopping.  Two friends learned how to take care of Owen in case I needed them to. One friend stopped by countless times dropping off a frozen meal for a day when it was needed. 

So many meals have been brought to us, and it's not like we live right in town down the street!  I remember one day two friends brought us dinner and then turned around and headed to the other end of the valley to deliver another meal to a family with a new baby.

When Landry was born and then passed away it all started again, the laundry, meals, cards and letters.  We had so much food that there was no more room on the counters, fridge or freezer.  Some very thoughtful gifts were given with no name attached that still mean so much.

Seriously, I could go on and on!  My point is is that service rendered to our family has been more than I can even comprehend.  I do believe that love comes when you serve others or when you are served.  I have come to love and respect people I barely knew because they chose to serve me and my family. 
What all this service has done for me?  It has made me want to be better, to do better, to serve more, to be less judgemental and more loving to everyone!  Everyone has a story, we just don't always know it.  I am trying to be more considerate of others because I don't know what is behind their public smile.
It is amazing to me what serving others can do.  Today the teacher ended her lesson with a statement, "by allowing others to serve us, we are helping them".  My thought was 'man we have helped a lot of people'!!  I pray you have all been blessed for your acts of service.
We have been very blessed by our families and the community we live in!  When and if I grow up, I want to be like all of you who have served me and my family!  I love you and thank you for the service and love given in our behalf.

Owen's turns the BIG 5!!

We never expected to celebrate this day with Owen, but we sure loved every minute of it!

Owen has been into fire trucks for awhile so I looked some up online and did my best.  He loved it!  I'm not sure if it was actually the cake or the bright red that it turned out to be.  I was sure glad I had so much red and black food coloring though.

As many of you know, Owen has a birthday buddy.  Her name is Mercydez and they were in the NICU together at Primary's.  It has become part of our tradition to celebrate angel Mercy along with Owen each year.  (That's why there is a princess)

 I can't seem to get enough of this boys smile, can you tell??

Owen got a few birthday calls on his birthday and he LOVED listening to the singing on the other end.  Thank you for the calls.

Christmas 2012

Merry Christmas!

Lenn's lights!

Our tree

Owen's tree.  Owen loves looking at the Christmas tree but he has gotten really hard to move by myself so we put up a tree where he could see it all the time.  He loves it!  Lately he hasn't liked new things coming into 'his' space, but he absolutely loved it when this tree got put up and decorated!

Our talent show:  I think I am the only one who loves this new tradition but it's okay I'm the Mom and said so!  Lenn does not play the piano but he finds a song each Christmas time and figures it out well enough to play it for the talent show.  He actually does a good job.

Bentley had us watch his video of the school play for his talent.

Abby did her clogging dance since her recital was canceled due to bad weather.

I made a video of all our past Christmases.

Abby said Owen's talent was his smile, and he did such a great job sharing his talent!

His new pj's.

Then we did our nativity.  Abby was Mary, Owen was Joseph with his staff, Bentley was a wise man, Lenn was the narrator and I took pictures.

This was probably one of my very favorites about this Christmas!  Bentley always goes through the presents under the tree, shakes them and guesses what they are.  He is right 99% of the time.  It makes Abby and I crazy.  This year I decided I would get the best of him, so I wrapped all the presents from Lenn and I with certain paper for each person but no tag.  Abby was sure that hers were the princess paper and Bentley was sure his were the Mater paper.  Little did they know!!

I hope you all had a wonderful Christmas this year!