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-spons... 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
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After reading your post, I cannot talk or think, all I can say is God bless you and your family, I just received a bad new about my daughter at this very same time. Will write more later. Ben is in the best place he has ever being and he is very happy. Hugs and blessings.
60484Thoughts for continued comfort, understanding and acceptance are winging their way from DownUnder.
I am very sad to read your news but I thank you so much for sharing little stories of Ben with me from time to time. More people than you could ever imagine knew of the great pure love that emanated from this wonderful young man during his short journey with you.
Much love to you both, Jan and Willie - Alma.
17214So sorry to hear of your loss. My thoughts are with you and your family.
Bärbel
26010My heart goes out to you and Willie. Ben may have been your angel, but you where his as well. And god gave you a mission in life, through Ben he has given you the strength to do so much you might not have every considered doing. You gave Ben a life of so much that he would never had in a "group home" or institution. God gave you the strength to raise him and give him all both of you could. God decided it was time for Ben to join him in heaven and release him form his earthly form to jump, run and do all the things he could not do here on earth. Remember Benny is watching over you, and thanking you for giving him the qualtiy of life you provided for him. God bless you both! You will be in my thoughts and prayers as you adjust to this new chapter in your lifes.
Hugs
Diane
22354Jan, I was so shocked and sad for you to read of your dearest Ben's passing. Also sharing your great relief that you no longer need be concerned that he might have stayed behind yourselves. You have such great memories of a life truly so well lived. My thoughts are with you all.
23163Dearest Jan and Willie,
Jan, you know I always use too many words, but right now I don't have hardly any. I always read about Ben, and admired you both for your love and care for him. Your message here nearly broke my heart, so I can't even begin to imagine how badly mashed up your hearts must be. You have an enviable faith, it makes you strong. Even so, even so... I hope God is strong for you at this time. I KNOW Ben is running and playing, whole and sound and free as a bird to do whatever he wants, now. I truly know so little, but I do KNOW that, with all my heart. I know it for Ben and those kids who bore troubles in this life, for healthy people who became old, or riddled with disease and deformity, even for our four-legged and winged friends who suffered. There is a song, one line goes, "And I will bear you up on eagles' wings..." we sang at my Mom and Dad's funerals, and my brother's. I have to believe that for them, and Ben as well. I am so, so very sorry!! And yet I'm glad you have the Cuties to share with; know we're with you, however we can be, for whatever you need. My love, to you, Willie and Ben, Marji.
33451Dear Jan and Willie, Please do not forget that you have your "special angel" watching over you both until you meet again in paradise, Hugs to a very special Mommy and Daddy.
113294758Dear Jan and Willie, I am so sorry to hear of your beloved Ben's passing. You have nothing to feel guilty about, you have both been such wonderful and caring parents. He loved you both very much, you will meet him again one day. God is good, I know he will give you the strength to get through this. Praying for you both.
12452So sorry to hear of Ben's passing. My thoughts and prayers are with you and your family......hugs Raelene
76409I'm so sorry to hear about Ben you have both been loving and caring parents and although you loved him dearly at times it must have been hard work, I'm sure you have many happy memories to cherish and keep you warm. My thoughts and prayers are with and for God to help you through the coming days LUV Chris maisiebo
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7528Read this yesterday, but too upset to write, I am so terribly sorry Jan.
Ben's life was cut short way to early. I can understand how painful this must be, so know I am thinking of you and family. I went back and read your earliest post about his life from a Baby...You were both truly Blessed to have Ben. We will all miss him...condolences to you both...love Kerry
25546Sorry for the lose of your son. I also lost a disabled son at age seven who is in heaven with Ben so I know that he is running in the wind and maybe will meet your son one day. Juanita
1 comment
by hightechgrammy
05 Jun 2014
Juanita, please tell me about your little guy, so I can know Ben's new friend too. I know you understand the value of the life of a person with disabilities in the way I do...... hugs
26316So sorry to read about lovely Ben's passing. My thoughts and prayers are with you. Huge cyber hugs Sally
24342Prayers for peace & healing. Jan & Ben has blessed our family many times, even though we have never met. My grandchildren were so excited to make a Uganda Quilt & see the pictures Jan posted. i am so sorry for your loss, Ben made a big impact on many people.
17727So very sad to have read the loss of your beautiful son Ben. Sending huge cyber hugs, Jussy :(
15256So sorry for your loss! Prayers continue for you and the family... Suzanne
111382Jan you have nothing to blame yourselves for or feel guilty about. Remember God's plan is perfect and he planned for Ben to go home first.
Helen
2350Dear Willie and Jan, I am so sorry for the loss of your beloved son. I read your post with tears in my eyes. There is so much love, joy and hope in this post and I know it is in your hearts too. I am absolutely certain he felt as deeply blessed to have you as his parents as much as you are to have him as your son. Please try not to blame yourselves. There are so many little things to get done in every day and even more so for you two. I seriously doubt Ben would want you to place blame upon your shoulders. He is free and running like everyone else can. He talks without a stutter and probably keeps his Aunt laughing at his joyful child like exuberance. He is a part of you, someone you shall keep forever. He is loved so very much, and that will never go away. Love always remains and I'm sure he took your love for him with him. Maybe it's a paradox, I'm not sure, but my Mom told me when I was a child that love is the only thing that grows bigger the more you give it away. I also believe it has no boundaries, not even death can take it away or destroy it. It is our gift and also a gift to those we choose to share it with. Your words are so full of love, joy, sadness, and celebration. God has given all of you a great blessing and it humbles me that you shared it with all of us.
Meri
15572Hello Jan & Willie, Sending prayers for the family. Just remember that God has Ben in his keeping & you have him in your hearts. He will never be forgotten.....one day you will meet again.
12407You have been tremendous parents. Heavenly Father only chooses special people, like you, to take care of his injured souls. He knew you and your hubby would love and care for Ben with unconditional love until it was time for him to come home. And, it was Ben's time to return home to his Heavenly Father, and if he had not choked to death it would of been another way. Do not blame yourself, you have selflessly given your life to Ben's care. This is Heavenly Father's will. You have earned your mansion in Heaven. Relish the good times and celebrate Ben's life.
10494Dear Jan and Wilie, you both have been in my constant thoughts and prayers today, and will be in many days ahead. God bless and keep you all! ro
19452Sorry to hear of your loss of your dear Ben. The way I see it, it was meant for this to happen so he could be freed of his pain, etc. It is a blessing in disguise. It is never easy to lose someone, but you have him in your heart and he will always be with you.
38558Dear Willie and Jan, I'm so sad with all these, but comfort me knowing he is in heaven. My thoughts and prayers for you in this difficult time. Love and blessings, Yoriko
88650Jan, I admire you and love you for all your devotion to Ben; both you and Willie, throughout his entire life! Rest assured this was all God's plan, and be at peace with His decision! You know my thoughts well, as we have communicated our feelings about our "special" kids many times, to the worries of passing before them, recognizing that the care they require could not, or would, not be handled sufficiently by others. That worry for you has been taken on by our loving Lord, so rest assured Ben is in good hands!
I explained to Cindy about Ben's passing, and let her read the Facebook message. She cried a bit, then said, "Ben's playing with the angels, now, Mama, and he's getting to meet some of my other friends who have passed from my Special Olympics gang!" I hugged her and said, "That is right, Cindy! They are all having a party now for Ben's homecoming!" She has all Ben's photos you emailed to me in her photo album. As with all us Cuties, Cindy felt she had a connection to Ben, too! So glad you donated his organs to help others!! When Cindy had open heart surgery at age seven, there was a 50/50 chance of survival, and now she is 48. Without the surgery, she most likely would not have made it through her teens, and preparing myself during the surgery (as best I could) that if she did not survive, please let her organs be used to help others. She has been a blessing to me and so many others, just as Ben has!!
Loving hugs to you, my dear friend! I am always here for you!!
Angel
12500I too grieve for your loss but I also am happy for Ben because he is meeting our heavenly father & what a wonderful gift that is! You are in my heart & my prayers. ~hugs~
299559Grieve..even Jesus wept. But I can see you have a firm foundation of faith & know where Ben is AND how perfect he is now! Regrets? Please don't. We all will find something to regret when we lose a loved one (I did when Mom died) but try to think of the joy & love you showered him with!! I believe in God's perfect timing. There may have been worse things ahead for Ben & God was gracious to take him home. Feel our love & prayers surrounding you; our tears falling with you; our support in the coming days. Love in our Lord & Christ, Gerry B in TN
35675Dear Jan and Willie my heart goes out to you at this very sad time. Ben choose very beautiful parents to raise him. Don't beat yourselves up with the "what if's", you most certainly gave Ben the most wonderful life anyone could have given him. My deepest thought are with you. Love Marg
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29801Well Praise God Ben is now in thee arms of his and our Jesus.
May God be with you in the coming days and weeks hugs and prayers Carolyn
360648I am sooooo sorry for your loss! Keeping you and your family in my thoughts and prayers and sending you lots of hugs!
4384I am so sorry to hear of the loss of your dear Ben. I am sure he is at peace now in Heaven. I hope he gets to meet my special brother up there as I am sure they would have lots to talk about. The great memories you have of him will live in your hearts forever. Love and God's blessings Shirley
52686Willie and Jan , Sending Cyber Love and Hugs . What wonderful parents you were to a special little man, Yes Ben did have friends all around the world and i am proud to be one of his Cute friends. Pauline Australia :)
42046My heart goes out to you both, Ben had the best family possible, I am so sorry for your loss. May God bless you all, it will take time to heal your pain. I know you did a great job with Ben, don't ever doubt that. We all do what we can for our loved ones. Ben wouldn't have wanted anyone else, he is in peace at last, no more pain, no more sorrow. Sending hugs and prayers, Sharon
23282Jan and Willie I,M so sorry for your loss, may gods love give you peace and your memories of Ben bring you joy
948Oh! my dear Jan, Willie and family as I sit here this glorious Friday morning (7.20am) I have tears running down my face and I can't focus properly. What an amazing family you are and how blessed was Ben when he chose you to be his parents. I firmly believe that our children choose us and of course are only on loan throughout their lives. God knew you two would be the right parents for Ben too. Isn't it wonderful to know that he is now whole and perfect and standing tall and speaking with God and the Angels. I'm so thankful that Ben had Jesus in his heart and how special it was for me to hear him sing - thanks to this wonderful world of technology.
I'm so sorry about your allergies to flowers as I had already sent them before you informed me that you had allergies. At least you can use the basket and know that your friend in Australia loves and admires you.
What a loving gesture for you to donate Ben's organs to those who need them. That is an amazing gift and it's wonderful to know that he will live on in others.
"Romans 15:13 Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit."
With all my love and prayers for you during this very sad time. Love and blessings Chris
23450023577Prays for healing and peace for you and your family. May all of your memories be a comfort to you, knowing that Ben is whole and rejoicing in heaven.
5431I am so sorry for your loss. This poem was sent to us 20 yrs. ago when we lost our son. I don't know the author, but I hope it eases your pain a little.
I thank you for the life I've had
While down on earth with you
And now our Father's called me home
Please do not be too sad
For I was only lent to you,
While here on earth below.
I needed you to care for me
As only you could do,
In all you did for me
I'd like to thank you from my heart.
I loved you all the while
you shared my joys and dried my tears
With discipline and care.
You kept me warm with all your love
And soothed away my fear.
Please do not mourn for me too long,
For I am safe and well.
And though I miss you all the time,
I sing the angels song.
I am happy where I am today.
Eternal joy is mine,
And when our Father calls for you
I'll help you find the way.
Had I the choice which God once had
To send me to some home
And I could start my life again
I'd choose you for my folks.
1 comment
669Jan, Big Huge Hugs to you and your hubby... Your son is always going to be in your heart and will see you again someday. Celebrate his life, and think of how blessed you were to have him as your son. You had said he wasn't supposed to live very long. You were such a great "Bennys Mommy" he was here for 26 years! A true miracle!! I am so very sorry for your pain.... sending you wishes for strength and healing.
13216Many hugs and prayers for you! You have been blessed and so was your son.
Hugs, Nadyne
24424Jan and Willie,you know that nothing you did, or didn't do, could have stopped the Lord from calling Ben home.With your heart,you know that.Now let your mind know that too.I made a remark some time,after Isabella died.(Willie,Isabella is Avery's identical twin) I said, I was ANXIOUS to get to heaven,now that I had her there.I think some people thought I was sucidial.I said no,I wouldn't ever have a sucidial thought.I just meant, although I know I am saved and looked forward to eternity,I have this EXCITEMENT about really going! Just think,Ben's there! ....I know you will cry,that's a natural part of healing.You may even think you 'hear' Ben sometimes.(I would get up at night because I could 'hear' her crying.)I think maybe I almost lost my sanity at times,and you may too,but know that it will get better, it will take some time. You are wonderful examples of what a christian should be, and you have wonderful support from friends around the globe, that are willing to lend an ear to listen, and a shoulder to cry on.Above all,keep talking to God,He has your son with his now.In christian love,Toogie
109780Ben was blessed to have both of you as his parents. He was, and still is, loved.
Hugs, sewmom
463419Oh, Jan and Willie, my heart just breaks for you. I must rejoice for Ben though, because I know he is running and dancing and talking without a struggle. I can just hear him bending God's ear and thanking him for giving Benny's Special Mommy to him.
158717Dear Jan and Willie, Ben was such a special young man and you were the best parents ever. You made his life happy and loved him and he loved you as well. Do not blame yourselves for any part of his death. God decided it was time for him to go to his heavenly home and no matter what it would have happened. You are in my prayers and may God provide you comfort in knowing that Ben is without pain and with his heavenly father. We are always here for you. Hugs, Mary
33871Dear Jan and Willie - I really believe that you were meant to have Ben. No two people could have been better parents. Please try not to blame yourselves for what happened. I will be thinking of you on 31st. May. Love and hugs to two very special people. Sarah
255054Dear Jan & Willie...words cannot express how sad I am for you and your family...so very, very sorry for your loss...we all felt as if we knew Ben here on Cute through all of the posts and pictures...we will miss him...
318469Dear Jan and Willie
There couldn't have better parents than you two. The love you felt for Ben have touched all our hearts and I was always delighted to read about how you were coping. Ben is in peace now, not any more in pain. My thoughts are with yo
57492So sorry for your loss God only Gives Special PARENTS special children, he had it written how thing were to happen before he sent Ben to you. And God knew that you needed a rest, and Ben needed to play. Never lose your loving nature, GOD be with you.
19282Dear Willie & Jan, mere words can not express my thoughts at this difficult time. So instead I am sending prayers.Ben was so lucky to have such caring parents. Yes, he had friends all over the world and he is missed by all. May God give you both strength and peace. Stella
15982Ah Jan, dear lady, I do hope that you and your Willie will not beat yourselves up over leaving the carrots out as it was God's plan. It is so hard for us to know the how & why of what God has planned, but I do believe and you will in time also that this was what was planned. God bless you and your family.
16707You were gifted with an angel and you protected him well. God had need of him further and so called him home. you and your husband did a wonderful job and took all of you love and energy and gave him a great life. Take time for yourselves and know that you were loved by your angel and by your family here. R
1383Sorry for your loss - my heart goes out to you both - and prayers that, with time, all the what ifs will fade, and you will always feel the warmth of the special bonds and sweet memories that the three of you shared.
3568You and your hubby gave ALL of yourselves (And MORE!) !!! Gave your whole world to a beautiful miracle! I read your initial posting when Ben turned 26. I was DEEPLY touched then and I am DEEPLY touched now! Many many MANY prayers for you ,your family and friends ! You were all BLESSED through having Ben to love! You are both Angels on earth and now Ben will be with Angels in Heaven. LOVE to you !!!
6190Wow, Jan, what an editorial on your life with Ben.......you have had a huge responsibility for 26 years and have been an inspiration to me and others because of how eloquently you have handled your life.....
Now is the time to breathe and reflect on Ben's fantastic life and his wonderful future in heaven......You & Willie have saved Ben's life numerous times, this time God's plan was to take him to his forever home, where he will live pain free and thrive among the angels! God Bless you and your wonderful family..........give yourself time!!
Love you.....Vicki
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109774So sorry to hear of your loss, dear Jan. You must be overwhelmed with emotions. Such a mixed blessing - Ben is now at peace and will never suffer again. Although your heart is heavy right now, you have made precious memories of the time you did have with Ben. Through you posts here, it is clear to see that you did a wonderful job caring for your very special boy, and that he was truly loved. Now, you & Willie need to take a breather, and be kind to yourselves.
31625Dear Jan: Ben could not have wished for better parents to take care of him. You and your husband gave him all the love and affection and more.
Just remember the good times with him and know he is free from pain and suffering and running in the beautiful fields of flowers. I am sure you will feel his presence now and then as he looks down on you and Willie to show you that he is still with you both.
Warm hugs
Jerri
30656What a blessing that you now do not have to worry and grieve in your old age, 'What will happen to Ben when we are gone?" He gets to wait at the gate for you, and yes, in his new glorified body all is healed and beautiful aand straight and well and right. You should have no guilt. You gave your life over to your special Ben and look what he became -a loving, God-loving, kind young man who strived against his problems.
The organ donation is the thing that will bless you the most in the long term, realizing that part of his continues on (on earth) and that several people's lives got so much better because of your sharing Ben with them. It was the second most reassuring thing to me in the death of my husband Charles, after the fact that I knew I would be with him in heaven forever because of our belief.
1 comment
by hightechgrammy
22 May 2014
You truly understand exactly what feelings are coming and going through my heart and mind. Thank you for reminding me. I keep forgetting that we will see him again!
66911Jan, I can understand the grief and pain you are going through. Please cry and grieve and share with us. We grieve with you for a very special young man who has been and is a part of our families too. I know Ben is in Heaven whole and complete as God intended. I also know he is patiently waiting to greet the Mom and Dad he loves so much here on earth, when they reach Heaven. You are not alone and will not be alone through the grieving process. When you are up to typing a message, we are here. When it is too difficult, we are praying for you and your husband.
169064so sorry my prayers are with you and your family I grew up with a brother that was disabled from birth and he was such a joy to us.
hugs and love Lenamae
32767Dear Jan -- YOU are a wonderful mommy!!! You and your husband were the BEST parents Ben could have! Many parents would not have been so loving or so willing to stay up most the night -- every single night.
Big hugs!!
My prayers continue...
57675The world is full of 'what if's'...prayers, thoughts and healing wishes are being sent your way. Leaha
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