Tuesday, May 17, 2016

Bo the Sweet Little Snuggler

I love this family!  I first heard about Bo from my son and daughter-in-law, Nick and Jamie.  Their good friends are Bo's parents, Clay and Tiffany Barnes, and last fall, they told us about this sweet little 2 year old who was going through a tough time with a spinal tumor.  I was drawn to this little guy, in part because Nick and Jamie have their own little boy, just a few months younger than Bo, who has burrowed his way into our hearts.  I couldn't help but shed some tears when I read about how Bo loved to snuggle with his mom.  I also couldn't help but smile as I read Tiffany's beautiful tribute (below) to her son.  Just a few weeks ago, another son was born into the Barnes family.  I hope he got to snuggle Bo before he came.

Enjoy reading about Bo and the happy life he lived.  He is a special little boy with a strong valiant spirit.  I look forward to meeting him one day.

From the second we found out I was pregnant with Bo we were beyond excited! Bo took awhile to come to us and I remember thinking that after a year and half of trying to get Bo here that, he would come when Heavenly Father needed him to come. When Bo was born I was so giggly and the nurse thought it was so funny that I kept laughing. I think I was giggly because I felt like a little kid, and that I just received the best present ever. I had my little boyfriend! From day one Bo loved to snuggle on my chest, in fact I remember the first day he hardly ate at all because he literally slept on my chest all day. I cherished every second of it.
            These past 2 years have been full of the best memories ever! I feel so blessed to say that we have no regrets of wasting anytime or letting any memory go by, we cherished every single moment with our family.
            The first year of Bo’s life he was just like he was this last year, ALWAYS happy. He was the best baby, and the best toddler. He never threw tantrums or really even complained, even with everything he has gone through. He grinned through it all.
            At the beginning of this last year he caught onto the idea of prayer and he would tuck his little fists up under his chin every time we said a prayer, and then throw his arms in the air, and say amen after. I have always loved that he did this. These past few months he has said the prayer at our home several times with either London or Clay or I helping him. He loved to say the prayer, and we loved to hear him with his cute high-pitched voice.
            One thing that brought a big smile to Bo’s face was mowing the lawn with Papa Brent. He loved to sit on his lap and help drive the mower around and he especially loved to use Papa’s tools and help him “fix” things. He loved being outside. We would do bubbles and ride bikes out front and he loved to cruise with London in her pink power wheel car. Those two together were wild and crazy!
            Bo was so lucky to have both grandparents and so many aunts and uncles who live close. Everyone loved Bo because he was always happy and had the cutest big cheesy smile. He loved Tuesday’s when grandma “arie” would come to watch him while I worked. She always took him to do fun things or get some type of treat. They had a great bond, he felt so safe with her, even up until the very end. If we ever even headed in the direction of grandma Sandi’s he’d be so excited and make sure that’s where we were headed. He had so many amazing memories playing with all of the cousins and hanging out with Aunt Brittany and Blair. They always made some type of treat or project with him. He especially loved the hot chocolate. The last party at grandma Sandi’s was two weeks ago and all of the cousins were dancing and he didn’t feel good at all, but he wanted to get up and dance with the cousins and he did.
            We got to take Bo up to Clay’s family’s cabin several times and he would play in the dirt, ride the little four-wheeler, and play non-stop with the cousins. I think our favorite memory from the cabin was when we pulled a bunch of mattresses up to the couch and the kids were jumping onto them and Bo wanted to do a cannonball and he let us know. He would yell WATCH as loud as he could until we were all looking. He would yell, “cannonball” and then just fall onto the mattresses and laugh so hard and get right back up and do it again.
            Bo loved and still loves his sister so much! They were best buddies. They would turn on the piano and dance for us most days of the week. Bo loved music!!!! If we were driving in the car and a song with a good beat came on I’d always look in the rearview mirror because I could pretty much count on seeing London and Bo dancing. As soon as we made eye contact in the mirror he’d giggle. Bo watched a LOT of movies these past two months in “daddy’s bed” that’s always what he called our bed. I think maybe he called it mommy’s bed once or twice, but it pretty much was always Daddy’s bed. Whenever a song came on no matter what show he was watching (my favorite one he’d dance to was on Home) he’d naturally start moving his cute little body… it would usually start with his little bum. And then sometimes he’d put one leg in the air and shake it to the beat. He KNEW I loved it!!!! It made me so happy, I’d always ask to see the little bootie dance. He would do it and say, “mommy wook” with his sweet little grin looking up me shaking his leg in the air or his little bum.
It’s fair to say Shows, chocolate milk, juice, pizza and mac ‘n cheese were a big part of comforting Bo these past two months. We probably watched Planes, Light McQueen (keen) Home, Incredibles, Penguins of Madagascar and Monster Inc 100’s of times. His very favorite of all of these the past few weeks was Planes Two because he loved the helicopters in it.
            Bo loved bowling! It was so cute how much he loved it. We went a month or so ago with my side of the family and his excitement was so cute that he ended bowling for almost everyone because it was way more fun to watch him get excited then it was to get a good score. He loved being with his aunts and uncles!
            Bo went everywhere with me! We had our routine of going to the gym after we dropped London off at school and then splitting my protein bar on the car ride home. Every time we’d go to the gym Bo would look for the motorcycles that always parked by the entrance, they made his day. If they weren’t there that day he’d say “cycles go?” and then he’d say, “darn it.” It was the highlight of the gym for him. Clay would always make protein shakes and he always included Bo and London. They became pro shake makers. Bo loved his protein shakes with daddy. In fact, when he was on his steroids he would wake up in the night and say, “shake!” we’d make it, and just laugh. Then one day he came walking in with a little 1-2 lb hand weight. We still laugh about this, those steroids made him crave protein and need to lift weights.
For Bo’s age he was very untypical. He was always worried about other people. He would always share his bites with us or ask if we were ok. My very favorite was that he always knew mommy was cold, and every time he’d lay down with his blanket he’d pat the bed next to him and say “mommy snuggle” and when I’d lay down he’d without fail ask, “mommy cold?” and he’d put part of his blanket on me. I love this memory and will never forget it. A couple of weeks back both he and Londy got sick with high fevers and even though Bo felt yucky he was so worried about London. He went and got one of his syringes and brought it to me and said, “mommy, londy (lonny) sick” He new that he’d been getting so many syringes of medicine and that it helped him to feel better and he wanted to help her. So he walked over and gave London a medicine syringe. He had the biggest heart. If anyone ever cried, he’d say, “matter?” and say “mommy sad?” He would constantly give us big hugs out of no where and we loved them.

This year Bo has followed in his sister footsteps and started loving to cook. It was so cute! He would always ask for his tool, the spatula. Londy and Bo made several pancakes together and he even made me breakfast one morning. I let him cook my eggs. He was adorable cooking those eggs, he took that job seriously, I asked him he was done and he said, “nope” and kept cooking them to perfection. I love my cooking buddies. I’d say 90% of the time we’d put candles in the pancakes and he and Lond would love to blow them out. He was never satisfied to blow them out just once, he’d blow it out and immediately look at me and say “again?” with a question mark hoping I’d say yes. I think after maybe the 4-5th time I’d say, ok last time. 
We lived at the pool this past summer! He LOVED to be in the water. London was the best big sister and tried to teach him to float on his back. They would practice in the bath tub all the time. He became so proud of himself, just last week in the bath he laid down with the bubbles surrounding his body and had the biggest grin and said, “mommy, Wook!!!” I was so proud of him!
Bo got to go to a lot fun places this summer including Jackson Hole and Lake Powell. He loved both trips so much. He got excited about everything! He even got to surf with his daddy. His perfect white skin actually got tan. His white hair, big blue eyes and tan skin was enough to melt me. I think pretty much everyday of his life I told him “I love you so much, I can barley handle it.” I literally felt like my love for him could explode out of my body.
Bo loved playing the Bing game with me, his giggle was contagious, his love for airplanes made us all love them, his love for his sister was the most tender and precious thing to watch, his big cheesy grin always made us laugh, I loved to dress him to look so handsome, he loved building forts in the front room, and if you ever asked him if someone was nice or mean (even if they were a mean character) he would ALWAYS say nice. To Bo everyone was nice. That is perfectly fitting for who he was, he always looked on the bright side.
The week after Lake Powell was when we started noticing symptoms in Bo that we started to worry about. As September and November went on things didn’t change and we became a little worried. He started having horrible tummy pains that would cause him to shake in pain and sweat and cry uncontrollably. We started taking him to the Dr and they did x-rays, and blood work and a few other tests and they all came back looking normal. Shortly after we went to see a GI specialist and that procedure was normal. Dr’s were at a loss, maybe thinking some sort of allergy, so we cut things out of his diet in hopes that would help, but there were no improvements. I then took Bo to a holistic allergist and did several treatments along with chiropractic work to help with his posture. After several rounds to the chiropractor and allergist we took him to an amazing allergist in Salt Lake who we miraculously got into right away. She wanted me to go straight to primary children’s hospital and stay until they figured out what was wrong. So I drove straight there. After several tests that came back normal they admitted Bo and wanted to do an MRI of his brain and Spine. Clay and I waited in the hospital room for 3 hours while this was happening and I honestly didn’t think they would find anything. On November 21 As the Dr came in and sat down I knew from that second something wasn’t right. She told us she had bad news and that they had found a tumor in Bo’s spine that went from the base of his neck to the middle of his back. Up until that point in life I had never cried so hard in my entire life. We thought we had caught it in time. Bo did 3 rounds of chemo and during this we tried to live to live to the fullest doing all of Bo’s favorite things. He had fun these past two months making memories with our family. His favorite thing was to go to the Provo Airport and have the planes fly in over his head. Every time we went I was grinning from ear to ear because he was ecstatic!!
As we went to do Bo’s next treatment last week he was in a lot of pain, things changed over night with his pain level. He was living on morphine every hour and still not comfortable. They did another MRI to see how the tumor was responding and it hadn’t changed. We were so relieved!! But that day he just didn’t get better, he was super lethargic and having a hard time waking up from being put under. That night around 7:00 our world turned upside down when he had a seizure and his vitals dropped rapidly. The got him stable and took him to the PICU thinking he’d get the tube out within a few hours, they said most kids wake up and start pulling at it. Clay and I left and went up to bed after a long night thinking he was going to be ok. The next morning we went in to see that his tube was still in. Our hearts dropped. The nurses insured us that it wasn’t what they expected at all, but that it was ok. They wanted to do another MRI to see if anything had changed in the tumor. Sure enough it had. The swelling had moved up into his brain stem. The neurosurgeon met us in our room and he presented an emergency surgery option. When he told us Bo may be a paraplegic, the tears came streaming down our face. He didn’t know if the surgery would help, but it was basically our only chance to see if Bo would move his arms and legs again, so we went forward with the surgery. Bo’s vitals went up and down as the days went on and Clay and I lived at the hospital by his side along with many family members who wanted to see him. He was on a lot support but the nurses stayed so positive that I wasn’t giving up yet. More days passed with no improvements and on Jan 19 we had a meeting with all of Bo’s Dr’s to discuss his condition and what they expected to happen. When we sat down and heard the news I just cried and cried. They said Bo would never be able to move his arms or legs again and would probably have to have a feeding and breathing tube forever and never have control over his bowels. Our hearts dropped!! I made sure we understood everything very clearly and that there was no chance at recovery from any dr’s standpoint.  They all said no. I was crushed into a million pieces knowing that we were going to loose our perfect little boy who just days ago was happy and functioning. Clay and I had prepared ourselves little by little that week for this news, but honestly I didn’t think it would really happen. I was still thinking that miracles happen everyday and that he could be one of them. Clay and I decided that the next day would be the day to let him return to our Father in Heaven. I got to read Bo his last book and snuggle next to him all morning. I made the dr come back in to reassure me that ALL of the neurosurgeons felt the same, and after that was confirmed I finally felt like I could let him go. We listened to our favorite church songs all together just before we had to let him go. Bo passed away peacefully within a matter of moments in my arms. I held him and snuggled him like I’d wanted to do for the past week. The nurses and Dr’s had all been so strong the whole time, but Bo had touched their lives and they all had mentioned that there was something different about him and our family. They truly became friends and we thanked them for everything they had done to try and save our sweet boy. They loved him and truly cared about him more than just a patient and you could feel that.
Bo’s enthusiasm for life was contagious! You couldn’t not be happy if you were with Bo. He had the brightest light within him at all times. Even when he was sick or in pain he always tried to be happy. He never hit the terrible 2’s phase and I don’t think he ever would have, he truly was that sweet and that perfect. I have no doubt that he was so perfect and he wasn’t meant to endure this hard life. We feel beyond blessed to be his parents and can’t wait to hold him again. We will miss him more than any words can express, but I know that my baby is safe and doesn’t have to go through the many trials and hardships of this life. Now we just have to live in such a way that we can be with him again and enjoy every second with him as we did here on earth and know that we will never loose him again. Eternal families are the only thing that is slightly making this possible. I know I will be with my sweet, perfect, compassionate, loving and caring little boy again.

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