Christmas Card 2012

My heart is full as I sit and reflect on 2012. We have had hard years in the past, there is no doubt about it, but I have to say this one takes the cake! Hatcher did not have one surgery this year, but he has fought harder than I have ever seen him fight. With that being said, I don’t think there has been a year that we have seen so many tender mercies.

The Hatcher Wheatley Professional Bull Riding benefit was definitely a highlight! It was an emotional day and we were so happy Hatcher made it out of Primary Children’s so that he could be there to watch one of the things he loves most … bull riding! It was a humbling experience as so many gave to this special little boy and helped to lift a very heavy burden. Friends, family, community and even strangers packed the arena with hundreds of raffle and auction items, food, music, entertainment and cowboys! Although Hatcher looked weak (he had just spent 5 days doing experimental inhaled heparin treatments in ICU) he has never looked so happy playing in the dirt and hiding in his miniature clown barrel. It was the most humbling thing Randy and I have ever experienced as we watched many that had little give so much. Although there was an extraordinary amount of money raised, there was also an extraordinary amount of hope raised that day as well! We are forever grateful for those who sacrificed and worked so hard to put it together. It is something our family will never forget.

At the end of May we headed back to LPCH at Stanford to meet with transplant and touch base with our team there. Hatcher had continued to struggle with casts and was really suffering. I can’t tell you how many nights we sat up with him wondering if it would be his last little breath. But low and behold morning would come and his fight would continue. Doing so many experimental treatments has been nerve racking, and we were hoping for some ray of hope! After a very long and emotional day at Stanford, it was decided by us and the team that a heart transplant (in hopes of fixing the problem with his lungs) would not be the best option for him. They agreed that they would do it if we felt we wanted to go forward with it, but with so many unknowns of plastic bronchitis and his history, the outcome was very unknown and chances of survival scary. After we left the hospital I felt such sadness and pain, but I also have never felt so much peace. After our plane ride home we were driving back to the house when Hatcher very quietly from the back seat asked us if he was dying. That was the hardest question I have ever been asked. I explained to him that we all die, some when we are little and some when we are big, but that it was part of Heavenly Father’s plan. His response, “OK.” He is such a little boy with such a big soul. I thought, OK, I can live with that too, let’s hope for lots of days or years, but in the end it will all be OK. We knew we had done all we could do and now it was time to enjoy one another and let this little boy make some memories! The summer was rocky and it definitely took a toll on all of us, but by the end of summer we were feeling hopeful again with a new herbal approach and some really great days!

October was the most exciting month in our house as Hatcher’s wish was granted and we went as a family to Disney World to meet Woody! Higland High School raised all the money for Hatchers wish and we made friends with an amazing girl Timmie Bowie who has touched our hearts as she has battled her own fight with such grace. We stayed at Give Kids the World, a resort for wish families that was founded by Henri Landwirth, a Holocaust survivor who came to America with $20 in his pocket and something very important, hope. It is like no other place in the world. Kids eating ice cream for breakfast, visits from Santa, birthday parties, presents, and to make this all happen; 1,500 volunteers a week. I was especially grateful for how special everyone made Jaxyn feel, she deserved it! She has been such a key person in our family through all of this. Spending time there sure fed our souls with a new energy. Standing in some shade with Hatcher at Universal Studios I was approached by another mother who had seen our Make a Wish buttons. She very lovingly looked at Hatcher and then at me and asked if she could ask what my little boys’ struggles were. I told her Hypo Plastic and before I could even finish she said, “I knew it, I lost my little boy to the same thing and when I looked at you I just knew, it was in your eyes, another mom just like me. I finally talked myself into having enough courage to come and talk to you.” She asked Hatcher if she could give him a hug. He shook his head yes, and gave her the longest sweetest hug, we were all chocked up. I was overwhelmed that two complete strangers would be brought together to share a very special moment. She introduced us to her family and then we parted ways in a sea of people. As I watched people that day I couldn’t help but think how we all have a story. Some of us may have a Make a Wish button on, but we all were buttons, some of triumphs and some of sorrows. What a wonderful time of year to celebrate the birth of Christ and the ray of hope he offers all of us, no matter what button we wear. We are filled with hopes of a wonderful 2013 and pray that each of you will be too! Thanks to all our wonderful friends and family who continue to be part of our journey, you make us smile and realize just how wonderful life is. Merry Christmas, we love you.

Love always,

Randy, Britt, Jaxyn and Hatcher Wheatley

Hatcher's Make a Wish Trip

Our wish trip was amazing!  Life is just so busy I'm afraid I won't be able to play catch up, so until then here are a few pictures from our trip to Disney World to meet Woody and Buzz!  We are so grateful for Make a Wish and the opportunity we had to go as a family and make memories!

First Day of School

Frist day of Preschool and 4th Grade!

Bellingham Sumer 2012

The Last week of summer we enjoyed a fun trip to Washington.  What a great time with cousins!

Kid Pictures

What can I say ... I love these two kiddos and boy do they love eachother!  So thankful for both of them.  I love this time of year when we are able to look at all we are blessed with.  These two are at the top of my list! 

10-18-12


We are home safe and sound from our wish trip, what an amazing and inspiring experience! I will do a full Make a Wish entry after I get caught up and all my pictures are edited and ready to go. I’m just so far behind trying to play catch up! Thanks so much to everyone for all the continued support and prayers, we are so blessed!

10-5-12

Let’s just say that there is a lot of excitement in our car as we head out for Hatcher’s Make a Wish trip. I can’t believe it’s finally here and Hatcher is feeling strong and ready to go! Feeling so blessed to be able to have this moment with our family! Timme, we want you to know that we love you and thank you for all the hard work you put in to making Hatcher’s wish come true. It seems so serial that you are fighting so hard now. We will carry you in our hearts our entire trip!

Funnies:

Randy was having a boy’s weekend with his dad and brother’s when our dogs decided to kill a skunk and leave it for me on the front lawn! The smell was lovely as you can imagine and I was grossed out, but I took care of it! Jaxyn stood at the door taking pictures! The kids were so proud of me! Let’s just say I hope I never have to do that again!

Hatcher comes into the bathroom where I was getting ready and says, “mom, I know what I want to be when I go to middle school. A doctor or maybe an animal shelter worker.”

Hatcher has been going to preschool and passing out “hunting tickets” to his friends. (They really are left over raffle tickets form his benefit) It sounds like the cowboys in Miss Marilynn’s class have a pretty serious hunting trip planned with “real guns!”

Hatcher, “Mom, how old are you?” Britt, “I’m 31, why?” Hatcher, “oh, I don’t want to get that old…. It’s just too much!” Britt, “You better, I want to see who you marry and what you will be, and be a grandma to your kids!” Hatcher, “mmm, no thanks mom.”

9-26-12

I haven’t even posted my last update and I am ready to do another! The countdown is on ….We leave for Florida in just a blink! The kids are beyond excited. In fact I have never seen Hatcher so excited for something! At the Give Kids the World resort where we will be staying they have tons of activities. The kids have watched the video over and over in anticipation, and can you guess what Hatcher is most excited about? Yes, the horse back ridding, always a cowboy. My hope is to get my blog completely updated before we leave so I can capture the entire wish trip so we always will have that memory. Hatchers echo went well and his tricuspid valve even looked good! It is still just the lung battle right now. I almost hate to say this in fear I will jinx all the good days Hatcher has had! He has been oxygen free for 3 weeks and even the last 4 nights – what? I can’t believe how different my life is with his good health the past few weeks and I hope I will always remember how grateful I am to just be able to do simple tasks! Here is my attempt to catch up with pictures for the past few months. We were able to squeeze in lots of fun and memories even if it meant leaving in the middle of a camping trip because Hatcher was not feeling good, but I look at all these pictures and I think, we did it, we made the best of summer!

9-9-12

We received a special visit yesterday from our “Make a Wish” friends! Goodies, balloons and a countdown chain till we get to take Hatcher to Disney World to meet Woddy and Buzz Light-year! The kids are so excited and seeing that chain and taking one of the links off this morning makes it all the more real! We are so excited to get away and make such a wonderful memory as a family! Hatcher started off the week with a trip to the ER. Jaxyn was trying to help me, and was coming down stairs, Hatcher in arms, with coloring stuff, when they had a fall and Hatchers head cracked right open. I have to say going to the ER for a “normal” kid injury was rather refreshing! He is fine … We had to laugh because Randy and I were thinking of all the horrific things he has been through, and if you ask Hatcher I think he would say this topped the list! Jaxyn felt horrible as you can imagine and I think she did more crying than Hatcher. It really broke my heart as she felt so responsible for it. She has been one amazing sister to Hatcher, dang those stairs! Although we continue to have the ups and downs, we have really had some quality days with Hatcher. He doesn’t seem to last too long and tuckers out rather easy, but hurray for the good times! Me and the kids hoped in the car last minute ( I mean I didn’t even know I was going till the afternoon we left) and drove to Bellingham to see my family. My brother form Texas and sister from Oregon and my parents all under one roof! Hatcher had 4 amazing days … the Lord definitely blessed us with those! Playing on the beach, catching crabs, kite flying, baseball watching, island sailing, and ice cream eating! It has been a long time (2years) since I have been able to go home with Hatcher and Jaxyn! It all fell apart the day before we left and I’m glad I didn’t know how the car ride home was going to go because I probably wouldn’t have gone… a sick week, turned into pneumonia but he recovered fast for Hatcher and once again is doing fine. He had his first day of Preschool this last week. He has been able to go oxygen free all day too! I had to pinch myself seeing him do such a big boy thing and looking so good! Monday he has an echo with his cardiologist form Primary’s, fingers crossed all will look good. It’s funny how life works. We had essentially come to grips with Hatcher’s condition and made some pretty huge decision when it comes to his life. Low and behold when we stopped trying live we were and are blessed with life! I know Hatcher and that tomorrow may be a battle yet again, but he still has fight left in him! Special thanks to Mickey Young and his knowledge, so excited to be going an herbal, naturopathic approach, and it’s working! I feel like my prayers have changed in the sense my only desire is that his days he has here on earth will be full of life and Joy. I think back to watching his whole body struggle just to get one breath and I plea with the Lord that he will not suffer. I am so thankful for the tender mercies the Lord has blessed us with, there are too many to count. Yeah for the first day of 4th grade and preschool, life is sweet!

Bath Robe and the Movies

So yesterday Hatcher was having a pretty good day so Grandma Vauna babysat so Randy and I could go on a date .  A date ... what is that?  It is so hard to leave this little guy, not to mention he is not the easiest kiddo to watch ... a little stressful, thank goodness for grams!  Anyway we had to run to the pharmacy and do some errands and kinda on a whim we drove by the movies, called grandma (all was well), so we decided to grab some bread sticks at Kmart (glamours I know) and go to Battleship.  While at Kmart I told Randy I was not prepared for a movie (I'm always cold, even in 90 degree weather if AC is involved).  So I thought I would just grab a sweatshirt.  Of courses there is not sweatshirts in July in the entire store, so I ended up with a bright pink polka dot bath robe (which I really did need).  I shoved it in my purse and stayed cozy, head on Randy's shoulder the entire movie!  It is so weird to go do normal things.  I couldn't help but sit there and think how the world just goes on. I felt rejuvenated when I got home and had energy for Hatcher's needs again.  I had to take this picture before bed because Hatcher was so happy just to be in the middle of us as usual.  He loves that our bed is his bed and always tries to get Randy's pillow before Randy can get in bed.  I'm thankful for this smile because it was one long night!  The loud oxygen machine that purrs, towel, and bowl that accompanie us every night is kinda funny when I think about it.  I bet I change my sheets more than anyone!  When those cast get stuck he coughs so much he throws up all the time.  We gave him his lasics too late and laying on top of Randy wet the bed, or should I say wet Randy!  We laughed at the scene ... and for some reason this makes me more in love with Randy than ever!  Loving this little boy (and Jax of course) more than anything makes us close.  I love looking over at this sick little boy on this strong man's chest, trying to make him feel safe when just breathing is hard.  I hate nights ... I'm up too much with Hatcher and have too much time to think, but last night I didn't mind it and smiled at the thought of me in my robe at the movies on a date!  I think blogging is like cheap therapy, makes me feel good to recognize all the good things in life! 

Oh boy, this update is so long overdue! Sorry to all of my avid blog followers…. Life with Hatcher has left me with little energy or spare time! What a roller coaster ride the last 6 weeks have been! Here is my attempt at a quick recap!
We headed to Stanford May 25th to meet with the transplant team at LPCH and to do some testing for the Hatch man. We went prayerfully hoping we would know exactly what to do. I should note Hatcher has struggled with casts more than we have ever seen. Heparin rescues in the hospital, extra TPA, treatments, ect … we were feeling like we were running out of time! Plastic bronchitis has consumed our everyday. After much conversation and plenty of tears, it was decided by the team and Randy and I that we would not proceed with transplant. I was more emotional than I had anticipated, I guess deep in my gut I was hoping for one more thing….something that I knew would not be glamorous but something that would hopefully give us more time. Hatcher’s Plastic Bronchitis is so sever the chances of surviving just the surgery would take yet another miracle! With such little known about the disease it is hard to guess the outcome, but based on all the team could put together we knew it was not right. I could write a whole entry just on our trip, but I will keep it short. Both Randy and I felt the spirit so strong…. Although we do not want Hatcher to die, we also do not want to put him through anything else unless it would give him quality of life. On the way to the airport to go back home Hatcher asked from the back seat, “Am I dying?” Holding back the tears we explained that we all die, some when they are young, some in-between and some when they are old. His response, “OK.” He has these moments when the windows of heaven open and he says the most touching things. Then in the next sentence he could be talking about farts (yes, anything about pooping, farting or butts is so funny to him). As you can imagine the flight and drive home was somewhat melancholy. We are also so thankful for the world’s best pediatrician Dr. Mcinturff! Also for the help from PCMC … what a team effort this has been. We have meet with the Rainbow team from Primary’s. They specialize in palliative care, basically how to help us in helping Hatcher if he is to pass away, make him comfortable and help to give us guidance. What a neat team they are and we are grateful for their help. In-depth conversations about do not resuscitate orders…. And our wishes for Hatcher. We will not be doing any procedures that would require a breathing tube …. And for the most part we know at this point there is very little that can be done medically for Hatcher. Deep breath…. This is what I try to do. I have cried more in the last month than I think I have the entire year. I am somewhat shocked he is still with us. Watching your child basically suffocate to death has to be one of the most horrifying things I can describe. There has been so many times Randy and I think it is the end, and low and behold somehow he musters up enough strength to get out a huge cast (or 10) and then morning comes or the hours pass and we get moments of Hatcher again! The crazy thing about this disease is that in one moment he is living, looking normal and the next I am wondering if today will be the day. Jaxyn has handled herself so well as usual but we have seen her worry more than ever. One night Randy took her in his arms and asked her how she was doing with all of this. She sat there a moment and then broke down, tears and more tears. Probably one of the hardest moments for me thus far. She so sweetly told us how she had been thinking about Christmas morning without Hatcher, movies on the couch by herself and no one to hold or read to. She said she knew Hathcer would be OK, but it would just be hard to be happy and not board without him. She is so much more than a sister, I tease her she won’t be able to go back to school this fall because I love her help and company. Tonight I was picking up while Randy was putting the kids to bed. Once again I put Hatchers cowboy boots away. Every time I do that I wonder if it will be the last time. It is the craziest roller coaster. With all that being said life goes on. Jaxyn turned 9, finished up school, stared rodeo and jumps at every chance she gets to go swimming. I snuck away to Oregon to see my sister, so wonderful (thanks mom and dad for being there too). Randy has been able to be home more helping with Hatcher and working from home when he needs to, what a blessing! And the summer is flying by! Over a week ago we meet with a Nature Path …. So inspired (a friend had referred us, so grateful) and the last week has been so much better. We were even able to go to Rexburg for a state track meet Jaxyn qualified for and stayed in a hotel! Hatcher did well and even has been without his oxygen on and off. I feel like he is enjoying life once again. So fingers and toes crossed that our no dairy, no sugar, no fat, supplement diet is helping his body and we will get some more time with our sweet little cowboy! We continued to be amazed at the love and support we feel daily. We are so lucky …. So blessed …. And would not be the same without this experience. As many of you know Hatcher has received Make a Wish. Highland High helped to make Hatchers wish come true. We are heading to Disney World in October (yes, he better behave himself till then!) A key student in Hatcher’s wish was Timmie Bowie. I have to say the first time I meet her I came home and told Randy how impressed I was. It may sound cheesy but I felt a connection with her the very first time I meet her. She now faces her own battle. Not sure if I Will have time to link it on mine tonight … www.timmiesjourney.blogspot.com. She is at Primary Children’s and I can’t get this beautiful girl with a contagious smile off of my mind. I know the Lord puts people in our path for a reason. If you can believe it she and Hatcher had rooms next to each other in the hospital recently… We know she will get the miracle she and her family deserve. So let’s add Timmie to our prayers, she has touched our family forever! I will post some pictures….some from months ago and here my camera sits on the desk with hundreds more to download ….one day I will catch up! As I reflect on the past few weeks I am so thankful for the Lords tender mercies. Hatcher was able to enjoy Wheatley cousin camp! Has pulled ribbons off goats tails at the rodeo, and even the days and nights he does not feel good we cherish just holding him. I am thankful for the mom this disease forces me to be….. KEEP ON…..SMILE….and LAUGH!

So blogger has updated and I'm trying to figure it out!  I guess the pictures load random....so not in order but non the less here they are!