Preston's fight against Acute Myeloid Leukemia

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6-14-12

Posted by Celeste Winslow on June 14, 2012 at 12:10 AM

I can't believe it has been almost a month.  It is weird, in some ways it feels like it was yesterday but it also feels like it was so long ago since the last time we were with him, holding him. 

Over the past several weeks, I honestly feel like it is getting harder. We miss him so much. The girls are still keeping us busy but even Abby is starting to speak more about how angry she is and how she misses him. I just can’t shake this feeling that he needs me. I wake up in the middle of the night and think about him all day about how I should be caring for him. I know really that it is me who needs him. I have cared for him for so long in a different way than how I have needed to care for the girls. I miss everything about him. A few days before he passed, James recorded him saying “I love you mommy, you’re the best. Bye”. I cannot tell you how many times I listen to that. I wish there was a button I could push to get him back.

We are all doing ok though. Like James says, we are managing. I hate when people ask how I am doing though. I am ok. Ok for our circumstances. I know people say time heals all wounds and that we just need time. I don’t believe that. We will never be the same. We will just learn to cope with it and that is what we are trying to do now. We are taking it a day at a time. I know people ask because they care and I know people don’t know what to say. It is a horribly awkward topic. I have been so angry, especially this past week. Preston went through so much in the past 2 ½ years. More than anyone should ever have too. He rarely complained and he did everything he had too. I can’t stop thinking about his last month. Between the biopsies up his nose, cutting of roof of his mouth, and the injection under his eye, he should have complained so much more. He was so strong and incredible. He was 4 and he should have complained. That is what kids do. Hell that is what the majority of adults do.

Another thing that really upsets me is reading several people’s complaints about their kids being out of school and they can’t wait for them to go back and get away from them. I wish more than anything I could have all my children here with me, I would love to hear them fight constantly, I would love to see them be difficult and make messes. I would gladly welcome it. Being a parent is such a privilege, be happy you have the opportunity to spend time with your children, embrace it. You never know when it could be taken away. I wish I embraced it more than I did. Enjoy your children, even if they do drive you nuts.

For me right now, my girls and memories are the main things getting me through this. We painted the frame we got from his memorial portrait and ordered a shelving unit to go under it. We put it in the family room near the new digital picture frame that James got as well to show all the pictures of Preston. We have placed some of his favorite things on the shelves (books, games, movies, toys with some pictures) and at first I thought it was weird. It is kind of a shrine but Nana called it Preston’s corner and that sounded a lot better. James is right, truth is, who cares if we have a shrine of Preston in our living room. People display pictures of themselves all over their homes and for us to have a special corner in our home, other than his room, is not “not” normal. Most people never have to go through what we have and we can think of them as being not “normal”. I actually like it. It reminds me every time I look at it how amazing he was, how I miss his smile and laugh, and it has been great for the girls. I want them to remember their brother. I don’t want them to forget what they meant to him. His favorite things shouldn’t be tucked away in his room where we would rarely see them. I look at his trucks and remember him playing on the floor. I am thankful for those memories.

Abby has been expressing her feelings more. I hate that she hurts. This morning she woke up and went to Nana telling her how she is mad at God and he should have picked some other kid. James and I talked to her about it and she has every right to be angry. I am angry. We have read her a few books about death but in general we have been trying to avoid these kinds of things and we talk about our feelings a lot. A few people have sent books and Abby wanted to read one. This one particular book (which I have not and will not read the one for adults) talked about this child who got sick, went to heaven, how great it was, and then he went to God, sat on his lap and God told him he had to go back because he answered his Dad’s prayers. We quickly explained to Abby that God answered our prayers a number of times in that Preston got to stay with us much longer than anyone ever expected him too and that heaven is a great place for someday when she would get to go and be with her brother. The next morning, Abby woke up very upset. She went to Preston’s room and then to ours. It was a school day so we got ready for school and she told me a few times that she was really sorry. She talked about this book. I know the books intention was to portray heaven as this great place and that if a loved one went there, they would be happy but what Abby took from reading from this book was that if she prayed hard enough, God would answer her prayer and send Preston back. She was saying sorry to me because she thought she didn’t pray hard enough. For 2 days she prayed for God to send him back. This was 2 weeks after he passed. She hates the book that they say is a true story and is mad at God for not answering her prayers.

Abby went back to school for a few days last week. We sent her on the day of Field days hoping it would be a fun day and that she could slide back into her class with hopefully little talk about her brother. She so was worried and scared to go back. She did not want to talk about Preston at all with anyone. We told her that she could go to school and if anyone said anything to her, especially upsetting, to go to her teachers and they would take care of it and we would come get her. Thankfully, there were only 3 instances, and all 3 were taken care of and she did have a great day at school full of fun and was able to go back for the last 3 days. That day though, Abby told me, one of her classmates said “you must be so sad about your brother, I know how you feel”. Abby said “how do you know” and the girl said “I don’t”. Abby said to me “why would she say this, she doesn’t know, no one knows except people who lost a brother or sister”. She is right. I don’t even know how she feels, because it is different loss. Tuesday at school, they have mass. I wish someone would have thought how hard this day would have been for her. At the end of mass, they were setting up for a funeral. It was the first thing she said when she got in the car, “there was a funeral today at church, I thought about Preston”. I didn’t know that she would have seen them setting up and it has probably happened several times while she was there and she just didn’t notice. I knew there was funeral that day because James had received a text earlier in the day from the funeral director saying he was there and Preston’s flowers still looked wonderful so I asked her if she saw them. She said she saw white flowers but didn’t know if they were his. I know we can’t avoid Mass and church, especially since she goes to Catholic school but I know it would have been really difficult for me as well. The next day, Wednesday, Abby graduated from kindergarten. I was terrified of going because they held the graduation in the church. I told Abby I was probably going to cry a lot and she asked if I could please try not to but could I pretend it was because I was sad about her going to first grade. As soon as we walked through the doors, Stephanie said to James “I go see Preston”. Everyone always asks about Abby but it must be so confusing to Stephanie. James asked her where Preston was and she said “Preston is in heaven” but I wonder what that means to her. We went in and sat down and Stephanie got up and ran to the firs row where we sat for the funeral. I went and got her and told her we couldn’t sit there, that was reserved for the kids and she said she was a kid. I moved her back and thankfully Kerry and Ellie came so Stephanie was happy. Ellie is one of her friends that she was yelling about “where’s my friends” during Preston’s funeral. She asked Kerry (Ellie’s mom) “where’s the rest of my friends”? Well Stephanie saved the day. Every time I thought I would start crying, she did something to draw attention. When the kindergarteners were all walking in, Abby started down the aisle and Stephanie yells “Abby wearing my shoes”. Thankfully they both wore the same shoes that day and I said “what shoes are you wearing”. She looked down and said “oh, there is my shoes”. She walked back and forth between Ellie and me before I asked if Ellie could sit with me. She started eating dried fruit and was feeding ellie. Then while the class up singing she started yelling “Abby, Grace”. Abby in high tone, Grace in low. Just like she was yelling Mickey Mouse, Donald Duck at Preston’s funeral. She made me laugh. Abby was adorable. She was full of smiles and just so happy. I am proud of her. At the end of the ceremony, we were over with the principle getting pictures and Father Dan was saying a few things when I see Ellie out of the corner of my eye kneeling in front of Alter moving her arms like she was signaling someone to come to her. I look up and see Stephanie on the Alter hopping across. I was mortified. She hopped all the way across and I picked her up. After Father Dan was done with his prayer, he came over and said not to worry, they have kids who get up and go sit in their chairs and asked Stephanie if she had fun. She said yes and he told her to go hop some more. I told him to please not encourage her. After there was a nice reception and I got a cute picture of Abby in front of her brother’s flowers (I will post in the pictures section). They were almost 2 weeks old and looked so pretty. I would like to think of it as a sign that he was with all of us that day watching his sister graduate.

School is out now for the summer. Being a “mean” mom, I bought Abby a present and wrapped it. It was a 1st good language arts and math activities workbook. It was hilarious to watch her open it. She opened it so carefully, and then when she saw what it was, she was not thrilled. She said “no thank you”. Funny thing is she has enjoyed doing the activities when she sits down to do them.

James had a birthday last week as well. It was weird to celebrate without Preston. I think everything we celebrate is going to have emptiness to it. Abby signed Preston’s name in her dad’s card and then was worried that it would make her Dad sad. Of course it didn’t, he was glad his name was in it and that I got him a balloon from Preston but still, we all wish he was here with us celebrating.

We are trying to keep ourselves busy. Abby has allergy shots twice a week and Stephanie starts swim lessons next week, twice a week and Abby has swim lessons twice a week as well. All different days and times. I am kind of looking forward to it; it will force me to get out of the house.

James and I would also like to thank everyone again for all your wonderful support. All the plants, flowers, cards, emails, and messages have meant so much to us. Thank you Lorie Roberts, Julie Roberts, and Kristi Olsen for holding a fundraiser at Julie’s fan appreciation party. Your thoughtfulness is beyond appreciative. You all heard about Preston, never meeting him, and have showed our family such kindness. Thank you to all the same people plus Jaime McCament for also doing a fundraiser to help earn money for Bob Doster to build a sculpture in memory of Preston. That is so wonderful as well. It is things like this and knowing that our son has had such an impact on so many people’s lives that help us get through each day.

My mom left last weekend and my mother-in-law will be leaving this weekend. We are so thankful that we have had such wonderful family help and support. You guys have been more helpful than you will ever know. Thank you to everyone who has been sending donations as well. We plan on distributing in Preston’s names to the three organizations that have meant a lot to us at the end of the month.

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9 Comments

Reply Doreen Hill
7:22 AM on June 14, 2012 
It is absolutely amazing how Preston has touched so many lives and so many that never got the pleasure of meeting him. Forever in so many hearts. Prayers going to you all for getting through one day at a time.
CONGRATULATIONS ABBY on your graduation!
Stephanie, you are beyond cute!
Happy belated b-day, James!
Love you all.
Reply Tracy Hill
5:49 PM on June 14, 2012 
I'm very glad that you are celebrating Preston's memories -- so many people bury their grief and "move on" as quickly as possible trying to escape the pain, and I hope that being so open and willing to share your feelings helps you all. We continue to think of you and send our love.
Reply Grammie
12:37 AM on June 15, 2012 
I saw a book tonight waiting on the shelf for me to find it - it is written by Max Lucado

"Out Live Your Life" You were made to make a difference". The cover of the book is a little boy who is wearing a towel like a cape. This is Preston Winslow, he certainly did make a difference and he has already and will always out live his life. He made such an impression on so many, many people. Not only is he very loved by his family, he is loved by people that never met him but learned his personality through your writings and through the pictures of him.

You are all handling this well for the horrible circumstances, just as you cared for and gave Preston the strength to endure the last 2 1/2 years, he also gave it back to you and James and all of us. I can relate to your statement about it seems so long ago, Bonnie and I kept feeling that way right after he died and still do now. It is the loss that we all feel in missing his laughter, his jokes and his love that we are working to fill. Just as you cannot fully know how Abby feels, as much as all of Preston's extended family hurts, each one of his has a different degree of pain and heartache based on whether we were his grand parents, aunts, uncles, etc. You and James raised a wonderful boy, that is obvious about how many people fell in love with our Superhero, I am so proud of you and James and the girls for how you got your family through this nightmare and how you helped Preston become that wonderful little boy that he is. I am so glad to know that Preston did not fear death because the way you took care of him he never even knew he was dying. You will go through so many different stages of grieving, anger and loss will switch back and forth for a long time, You are correct, you will never be the same, none of us will. There will always be a hole in our hearts for the loss of him. We grieve for ourselves and what we lost, don't let anyone take your grief away from you,

Preston was met at the gates of Heaven by his grand parents, his great grand-parents and other family members, they are all taking care of and enjoying each other I am sure. I can see him and Grandpa Hill pulling practical jokes on everyone and laughing all the time.

I love you and the entire Winslow family, we all do, even the people that have never met you except through this page fell in love with our boy and miss him too. Stephanie has given all of us so many things to laugh at and that helps, Abby and Stephanie have gotten so close now, it is awesome to see. I wish I could take away all the hurt from all of you but it is not possible, all I can do is stand ready to help with whatever you need from me.

Love you. Mom
Reply Donnalyn Trapani
8:34 PM on June 15, 2012 
You have every right to feel exactly how you feel. Don't let anyone take that away from you. Just know that we all wish we could eleviate your pain yet know that is impossible. I continue to learn life lessons from Preston and the entire Winslow Family. God Bless you all.
Reply Peggy Pearce
9:47 AM on June 16, 2012 
Preston was perfect; in the Lord's image. He met every challenge with faith and love. I know that I will say " I love you, you're the best to evryone in my life and when i do, I will offer a prayer to Jesus. Thank you.
Reply Peggy Pearce
12:30 PM on July 2, 2012 
Your family is still in my prayers and I am sure in the prayers of many.
Reply Bernadette
6:00 PM on July 5, 2012 
Celeste - I read this in a book last week - immediately thought of you - hope you like it.

The angel took the little child, and bore him past the shining ranks
of singers and of harpers, past
the golden streets and lilied banks,
unto a quiet restful place,
where Mary sat, with wistful eyes
and tender smile and outstretched hands,
to welcome him to Paradise!

He was so small and mother-lost.
So dazzled, and so half-afraid,
He could not bear the bliss of Heaven
Or view the hosts in white arrayed,
Until the clasping, loving arms
And gentle voice dispelled his fears,
And dimmed the memory of pain
And dried the last faint trace of tears.
He nestled close against the heart,
The mother-heart where Christ once lay,
And felt the blessedness of peace
Balm all his hurts and griefs away;
And Mary sang until he smiled,
And rocked him till, with life elate,
He faced the wonders and the joys
And splendors of his high estate!
?What joy for the Christian mother who has given up her child to God, to know that at Mary?s heart it is only waiting to be restored to her, in a happiness a millionfold more keen than all the sorrows of the parting here. That, also, is one of the comforting thoughts which the Angel Guardian speaks to the bereaved mother, till in the light of faith, the rainbow of new hope plays, glorious through her tears?
Reply Peggy Pearce
4:03 PM on August 4, 2012 
Still holding you and your family in my prayers.
Reply Jen Bax
8:51 PM on August 31, 2012 
I am so sorry for your loss, just came across your story recently, praying you and your family are doing ok.