I went to Massachusetts this weekend with Kaleb and Stevie. I wanted to visit with Ben. It's been a few weeks and I am missing him so much. Today I found this letter that I wrote to my mom back in March. Only two short months before Ben passed away.
(you can click on the picture to make it bigger)
I forgot I had written this letter. It was a little eerie reading it today. Mostly because what I was feeling really did happen. I know Heavenly Father was preparing me as best as he could. I am grateful because I was able to have things in order when it finally did happen. It's still so hard, and as prepared as I was, I really wasn't. I miss him every second of every day...
Today I drove up to DHMC to take care of some physical forms for Kaleb. While I was there I dropped by the PICU for a visit. It was so hard being there without Ben. I know most people associate bad things and suffering with a PICU, but we didn't. It was always a positive experience for us and we love the people there. I felt fortunate that there wasn't a lot of suffering involved with Ben. He just needed the occasional tune-up and extra maintenance before returning back home. So you see, it was not a bad place for him to be. I never liked it when he was sick, but I was always confident that they would take such loving care of him and they always did. The tears flowed today when I entered the unit. I stayed for a little while, visiting with different nurses, doctors, NP's and tech's. I'm glad I did. They were such a huge part of his life.
These are my most FAVORITE college friends. They were all single and I was married when we met. They were big ball players. Once they learned I played ball (and was pretty good) we were instant friends. Today a package was delivered to my doorstep...a package of LOVE! I LOVE the fact that Leslie made these mini replicas of themselves and glued them onto candy bars. FUNNY! (and so cute) I LOVE chocolate, but not just any chocolate. And I'm not a fan of the typical 'boxed' chocolates. But man...THESE. These are SO GOOD! A local Rexburg treat. And the Willow figurine made me cry. It's perfect. It's called "Guardian Angel". I was teary because this is the way that I always held Ben in my lap. Even when he was almost too big for my lap. They also included a butterfly necklace to remind me of the dream that a dear friend of mine told about Ben here on the blog. THANK YOU! My heart is smiling BIG today. People have been so kind and so thoughtful during this past month. I feel so loved. Ben was so loved. That's why he lived for 8 miraculous years. LOVE. And love is what has sustained me through my grief and will continue to carry me through this life until I can be with him again. Thank you for loving me and thank you for loving my family.
My dad sent this to me today. It was from his 7th birthday a year ago. I'm grateful to see this picture. It makes me smile. We had just gotten home from our LONG hospital stay in Utah with the med flight back to the PICU at DHMC. He had only been home eight days. 24 hours after this picture was taken, we were BACK in the PICU with RSV. It was sad. Another LONG PICU stay. But I'm grateful that he spent his birthday with family at home. He didn't often give us that luxury. Something about birthdays and his favorite PICU. I faithfully made him carrot cake every year. And I ALWAYS made sure he got a taste. :)
Today has been a tender day. It's father's day and I have been up since 3am because I have been thinking about how we are celebrating our first father's day without Ben. I am sad that we can't share this day with ALL of Steve's children. We miss Ben. I know Steve misses being able to tease Ben. Every night as we were heading to bed, he would pick Ben up over his shoulder and tease him about his weight. Then he would sometimes dance with him and make his whole body jiggle. Sometimes he would teasingly scold him for keeping us up in the night. Whatever interaction Steve had with his cute boy was always done out of love. And I know Ben knew that.
He misses Ben. Elephant was his constant companion for 7 years. I promised Ben that I would take care of him while he is gone. He hasn't left my side very much since. I have done more funeral posts on my family blog because the pictures come out much bigger. So please jump on over to check them out. And be on the look out for the elephant. He's in almost every picture. :)
(sorry if these are redundant, but I want documentation in both places)
I went to see Ben's plot before heading back to NH on Monday. It was so very hard to leave. The finality of it all was overwhelming. I know my mom and sister Rachael will take really good care of his site. For those who don't know, my parents bought 3 plots right before my Ben was born. They were impressed to do so not really knowing why. After he was born, it was then that they understood why. We knew he would be in good hands next to my parents.
I haven't really done a full-on funeral post or burial post just yet. I'm gathering pictures from different people first. That way I will have lots to choose from. It was an incredible couple of days in many ways. So I promise, a complete post will be coming soon.
I can breathe. Then there are moments where I can't. I was driving in the car with my husband today, not because I wanted to but because he wanted me to. I'm still not ready for the public. He promised me I could stay in the car. So I did. Besides, I'm not ready to be left alone in my house so I was glad I went. After I came home I spent some time outside on my trampoline...laying in the sun. It felt so good. Then my phone rang. I recognized the number as one of Ben's many vendors calling. My heart sank. I answered the call. It was his feeding company. They were scheduled to pick up his IV pump from back when he had his PICC line in and receiving antibiotics. I had to tell them that Benjamin passed away and so I would be returning his feeding pump and IV pole as well. So many emotions. I don't like crying to complete strangers but I don't want to sound like it was no big deal either. I ended the call as quickly as I could, then turned over on my back and sobbed. I miss that boy...
Today we will be dressing Benjamin. Probably one of the hardest days aside from his passing. It will be the final time we will get to see and touch his body. This is the outfit we will be dressing him in. Thank you Aunt Suzanne for this gift. He will look so handsome. Below is Ben's obituary that comes out in the paper today as well. I struggled as the love we felt for Benjamin could never be put into words. I did the best that I could. So many HARD reminders. Oh how we miss those chubby cheeks and beautiful blue eyes with the lashes that waved to me every morning as I kissed him awake.
Benjamin McKay Orton passed away peacefully at home on Saturday, May 29th at the tender age of 8 years old.He leaves behind his father and mother, Steve and Becky Orton of Gilford, NH along with three older siblings, Kayla, Kaleb and Stevie.He also leaves behind his maternal grandparents, Kenneth and Priscilla Hutchins of Northboro, Massachusetts; his paternal grandparents, Chad and Beth Marie Orton of Logan, UT; many aunts and uncles and over 40 cousins who loved him dearly.
Benjamin was born April 4, 2002 and was not expected to live past his birth. He was our 8 year miracle who flourished purely on love.Our sweet little boy brought such joy and happiness to those who had the privilege to know him.We will dearly miss his beautiful blue eyes with forever lashes, his wrinkly little head and those kissable cheeks that we could never get enough of.
We are grateful for the Children’s Hospital of Dartmouth who became Benjamin’s second family, especially those on the DHART and PICU teams.Benjamin was fortunate to have such amazing doctors and nurses that lovingly cared for him which allowed for a quality of life that would not have been possible otherwise.
We take great comfort in the knowledge that families can be together forever and look forward to that day when we will once again wrap our arms around our beloved Benjamin.Until then, he will be wrapped around our hearts.We love you little Benny! xoxo
A celebration of his life will be held on Friday, June 11, 2010 at 11:00 AM at the Church of Jesus Christ of Latter-Day Saints,1442 North Main Street in Laconia, New Hampshire. He will be buried in the Town of Northboro Cemetery in Northboro, Massachusetts. Graveside services will be private.
In lieu of flowers, his family respectfully requests that donations be made to the Children’s Hospital at Dartmouth in Benjamin’s name.
"Parents who have surrendered the sweetest and smallest flowers from the family's garden need to remember our Heavenly Father. He has promised a special reward to those who now suffer in silence, who spend long days and longer nights through their trying times of bereavement. Our Creator has promised glory. He said, "For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but nigh at hand." (D&C 58:4) That promised glory includes the blessing of reunion with each child who has left the family circle to help surviving members of the family to draw nearer to God. Those children still live and are an heritage to the Lord."Russell M. Nelson
I'm grateful for these. I emptied another bag from our weekend trip to Jenny's. Stuff that has been sitting since we arrived home. Last night I took out the pulse oximeter machine that he was hooked up to that last night. There was his finger probe still intact. It smells like his stinky little finger and that made me smile. I'll be holding onto that probe for awhile. I also pulled out his little BYU hat that he received for his 7th birthday. A year of wearing it on his head has left smells that I'm so grateful for. I find myself sniffing his pillows, his stuffed animals...anything that has been untouched or washed since last Saturday. Anything to remind me of his smell...
The day after Ben passed I sent a mass email out to family and friends letting them know about Ben's death. Probably the hardest email I've ever had to write. A tender mercy came out of that email from a friend of mine. I met her when Ben was just a baby. She's an author of one of my all-time favorite books. In fact it was one of the few books that sat on the shelf above Ben's head. It's called "The Angel With The Golden Glow". I was privileged to meet her at a craft fair/book signing and receive my very own signed copy of this book. We have been in touch on and off throughout the years. She has worked as a hospice nurse, a private duty nurse and a health care counselor. You can read more about her HERE. She emailed me the other day letting me know that she had a dream about Ben and wanted to share it with me. We talked on the phone, I cried. She typed it out for me to have and I wanted to share it with YOU. Thank you Elissa for this beautiful gift.
On Memorial Day of 2010, I woke up from a dream involving a special little boy, Benjamin Orton. He had passed away two days prior at the young age of eight years old. This beautiful, little boy had been born with a small head and a small brain, otherwise known as microcephaly. Despite the multiple medical challenges that he faced, Benjamin brought love and light wherever he went. Adored by his family and surrounded by love, he lived far beyond most people’s expectations. I had met Benjamin and his mom several years earlier at a craft fair in New Hampshire. He was just a baby at the time, but one baby that I knew I would never forget. I felt honored to sign a copy of my first book, The Angel with the Golden Glow, in honor of this special, little angel in our world.
I learned of Benjamin’s passing in an email from his mom, Becky. Ten hours later, I actually shared a dream-like experience with her son. In the dream, I found myself holding a close-up photograph of Ben being hugged by a little girl, whom I thought might be his sister. I had the awareness that he had passed, and I felt the urge to hold him. Suddenly, Ben was right there with me inside an open, cardboard, mailing box along with a butterfly and a half-filled baby bottle of formula. As I lifted him out of the box, I thought, “Oh my, look at how long your body is! You have grown so tall.” Yet, as I cradled him in my arms, his body was more the size of the baby boy I had met years before. Benjamin was so happy, smiling and making “goo-goo” baby sounds. His head and face were both perfectly shaped, and his hair was thick, dark brown and wavy.
As I held him in my lap, Ben reached for his baby bottle with his left hand. “No, honey, I’m sorry. You can’t have that right now,” I said as I pushed the bottle away. “I first need to check with your Mommy because I know you’ve been on a special formula.” Ben didn’t seem to mind. He just kept on happily smiling, almost giggling, and looking around at all the people in the room. At one point, I repositioned Ben on my left hip in the same way that I had held my own children when they were babies. Amazingly, Ben held up his head entirely on his own, something he could not do in this lifetime.
I needed to let Becky know that Benjamin was there with me; I also wanted to find out if he still needed any special formula. I searched hard to locate her telephone number and then I tried to call. But, every time I reached for the wall phone, someone else seemed to grab the handle the second before I got there. Finally, I decided to shift gears and try a nearby cell phone instead.
With the cell phone in hand, I began dialing Becky when I noticed the butterfly start to fly away. “Oh no, Ben, I need to get the butterfly that your mom sent with you!” I wanted to be able to return the baby, the bottle and the butterfly to Becky. Quickly, I asked someone else to hold Ben with special instructions to support his head. Having given those instructions, I also remembered that Ben had just been able to hold his head up on his own.
By this time, the butterfly had flown into the right hand corner of the room and halfway up the wall. He was now huge and almost a foot in size. I didn’t want to hurt the white butterfly so I tried to grab it carefully by the back of its body and legs with my right hand. But, this enormous butterfly was extremely strong. The harder I tried to hold onto it, the more the butterfly fought to get away. Finally, my right hand cramped, and I was forced to release it. As soon as I did, the butterfly quickly flew out of sight. Then I awoke with the awareness that Benjamin just wanted to be free. This beautiful, little angel was not meant to stay here on earth any longer. Just like the butterfly released from its cocoon, Ben was finally able to spread his wings and fly without being encumbered or limited by an earthly, human form. I smile when I think of him. I know Ben is a happy, healthy and playful, little boy. I’m sure he’s having so much fun now with all his little friends in heaven.
I found these two pictures on a camera that Steve borrowed from his school. I didn't know they were there. It was fun to see Benjamin's CUTE, ROSY cheeks again. How I miss those cheeks. What I wouldn't give to kiss them again.
This is where he was when he was off the vent. Always with me. I only put him down long enough to eat a bowl of peanut butter and chocolate icecream.
I knew that these were hiding somewhere in my basement and so I had Stevie dig them out for me. These were made in the ICN when he was a newborn. Hard to believe that we thought we were saying goodbye 8 years ago...We are so grateful for the 8 years that Ben fought to stay on this earth. I know it was not easy, and there was a lot of pain involved. But I know that it was love that kept him thriving and growing. He was loved. He still is...
I knew this day was coming. I knew that it wouldn't last forever. But there are always regrets. I wish I had held him just one last time. I wish that I had taken more pictures. I wish....I wish....
This was the last picture of Ben alive. I took it Friday night after I finished doing his night time routine. I wish the picture wasn't so dark. (my flash is broken) I wish that I had a taken a few more. I wish that he was still here. I wish...