My Dear Wonderful Cuties,

I am so sorry it has taken this long for me to be able to write to you to tell you all that has happened with our angel Ben. He passed away, quite unexpectedly Early Monday morning. I just haven't had much time or ability to write. My heart is broken, but my soul is relieved. I know you ALL are feeling the pain for us. I know this. I know you are praying for me, I can tell and every once in a while I get a surge of joy from Heaven that I know is peace.
I get waves of grief and I cry out loud about why didn't I do better. Why didn't I play with him more? Why was I on this computer instead of playing with him?

Yet, I know I did tons with him and for him and loved him and he knew he was loved and everyone tells us we did a remarkable job. We were blessed with him. I have felt incredibly honored to be his mother. He called me Benny's Mommy and would call him Mommy's Benny. He was like an extension of me.

I knew him so well, and his thoughts were so hard for him to get out, with his stuttering. We were supposed to wait for him to actually get the words out, to not make the stuttering worse. It was so hard to do that. I don't know how I ever waited, but I think, I believe I did a good job on that all those years. I think i did....

I hadn't wanted to admit it, to recognize it, but he really had been going downhill physically. His scoliosis was so bad he couldn't stand up straight at all and his walk was just a shuffle. He was really afraid of the stairs and we helped him go up and down, but he would go up and down at night no problem. We didn't want to lock him in downstairs, where he like to sleep, because he just screamed. So we locked up EVERYthing every night. I usually stayed up to 2 am till I could finally get him tucked in for maybe a 3 hour sleep. Then I would sleep till about 8. Willie got up early and did ALL the morning routine before he went to work, which was a lot. All I had to do was dress him and bathe him later in the day. Willie has been an incredible loving and nurturing father.
But Sunday I made a Pot Roast with big carrots. Ben loved the meal and even said, "Good Meal, Honey" and we talked about how good those bigger carrots were.

I had left the rest of the raw carrots in a different place than I usually leave raw veggies. Neither Willie nor I saw them, so they didn't get put away.

Ben has two genetic syndromes: Opitz FG Syndrome and Koolen de Vries Syndrome. They have some overlapping traits and one of those is choking. For years Ben has crammed food into his mouth and then swallowed large amounts at one time. It is called "bolting." It's like they don't have the urge to swallow unless their mouths are stuffed full. He also cannot spit anything out of his mouth. I can't tell you how many times we have had to pull things out of his mouth, even broken glass he has bitten off. Bread gets caught way up high and we have to go in and clear it out. He loved baby carrots and was learning to chew chew swallow. Sunday night he chose to bolt a whole raw carrot. There were some donuts he could have chosen - Why oh why did he chose a raw whole big carrot? This is something Willie and I are both going to have to live with. We will just have to forgive ourselves for this. With God's grace we will.

We didn't want Ben to outlive us. We couldn't stand the thought of him living without us, of him suffering because he would have. Now we are so blessed that we are the ones who get to grieve, not him.
Ben has Jesus in his heart. He prayed - everyday, on his own and with us. He prayed for others and he prayed for himself. There is no doubt he is in Heaven singing with the Angels. And he is probably dancing too, because the Bible tells us he has a whole new and perfect body! My sister is there and they are getting to know each other. She was always a lot more fun than I am so I'm sure they are delighted with each other! Just thinking about this brings me incredible joy.

You would be so amazed at the outpouring of love and support we are receiving. Friends are coming by, bringing food, praying with us, telling stories about Ben and laughing and crying with us. Willie is being included and we are turning his room into a tribute place filled with all his special things representing parts of his life. The same friends here who also made quilts for Uganda are going to help me stitch Ben's quilt so It can be on his bed.

Thanks for reading all this, it's the first of many posts I'll probably make in my grieving process. I really am okay.
Here is a letter Willie wrote for us and posted on Facebook. and a couple of pictures.
Love you All and thank you for your kindness.

Thank you, Everyone from the bottom of our hearts for all the prayers, phone calls, Facebook posts,and emails. They have helped Jan and me ever so much. Jan will be working on an obituary and Post Office announcement that we will post on a Web page at www.grandcountymortuary.com. This Web page will also have a link to http://adamscamp.org/donate-sponsor/ where donations, in lieu of flowers, can be made to the Ben Wharton Scholarship Fund to help families like ours send their disabled children to the camp that Ben so loved. Please do not send us flowers, as Jan is highly allergic to fragrances and cannot have flowers in the house.

Our plans are to take Ben’s ashes to Roachdale, Indiana, where Jan grew up so he will be buried with family. We will have the internment on May 31st at Roachdale Cemetery. We are still working on the arrangements. Then, sometime in June we will have a celebration of Ben’s life in Grand Lake.

For those you who are wondering about Ben’s sudden passing: For years, we have had to lock up all food before we went to sleep. We had to lock cabinets and the refrigerator to the best of our abilities because Ben would go on an insatiable food hunt in the night.It was as if he was sleep walking. He would try to eat types of foods that he would never touch during the day. We missed putting away some raw carrots this past Sunday night. The Coroner said that the carrot that was stuck in his esophagus was 3.5” to 4” long and an inch to an inch and a half wide. It is no wonder that the EMTs and we could not dislodge the obstruction. The EMTs struggled mightily to save Ben but to no avail. Ben is now running for the first time in Heaven. He is no longer trapped in pain by his broken body. We all rejoice that Ben now has his glorified body and is truly singing with the angels.

Ben’s life was a challenge from the day he was born and had to be flown to Children’s Hospital. Ben fought the good fight, ran the race and kept the faith as well as anyone. Every day of Ben’s life was a gift and blessing from the Lord.

Thankfully we were able to donate several parts of Ben's body so that others may benefit. That makes his death just a little easier to bear.

Ben told us many times “Ben has friends all over the world” and he does, more than we could have ever imagined. Thank You for your love, prayers and support. We treasure all of your Facebook comments and memories of Ben.

Bless you all with God’s Love.

Willie & Jan

"It's a Word of Hopes and World of Fears" Ben Wharton