|Posted by Celeste Winslow on June 1, 2012 at 10:10 PM|
One year ago today Preston received his bone marrow transplant that we prayed so much would cure him from this horrible disease. He was 11 days shy of seeing his one year transplant birthday. I have so much anger that this did not work yet at the same time I am so thankful that it gave us nearly one year more with our precious son.
I wish I could say that things are getting easier. Days are much easier than nights, mostly because of the girls but I also walk around pretending that I will get to see him later. The girls hate to see me cry and as soon as I get a tear Abby tries so hard to stop it and if Stephanie sees she says “mommy crying” and then she says “I miss Preston”. I know it is healthy for them to see us cry and they do, but I also want them to feel comfortable around me and know that everything will be ok. Abby had a nightmare a few days ago that James died. She ended up in our bed and in the morning when James was not there, she got very upset. I hate how scary this all is for her. I wish I could pinky swear to her that this would and could not happen. Every night I cry myself to sleep and wonder how he is doing. Two nights ago was the first time I was able to dream about him and was so upset that I couldn’t remember what it was about at first when I woke up. Later I remembered that it was that I was trying so hard to get to him. I could see him sitting at this big table with all these people around him eating. Tons of food but Preston was just sitting there waiting for someone to help him eat, something we would often do. I wanted so badly to get to him and help him but he just sat there watching everyone else. The simple things that I would give my life for to do again. I miss so much sleeping next to him, getting his hugs and kisses that we would sneak on the lips that he would always whisper (don’t tell daddy), and just the sound of his voice. People say you really never know what love is until you have a child and that is true but now I truly believe you really never know what love is until you lose a child. My heart aches so much for him. I would do anything to have him back. It has not even been 2 weeks and I know I will hurt more.
Last week was kept busy with planning his funeral and with people here visiting. The funeral home could not have been more wonderful. They took care of everything and always came to the house. I am so thankful that we did not have to actually step foot in the funeral home. I had written last week that we had to come up with pictures for a slide show. I narrowed it down to 40 and I thought we did a pretty good job and Hall Wynne did a great job putting them together. (I posted them under the photo section) James bought a giant digital picture frame and put all the pictures (over 500) that I originally picked on them and put it in living room for us to see all the time of Preston. This is good and bad. I love looking at him but sometimes I catch myself not even raising my head to look at the part of the living room because I know I will break out in tears. James and I wrote his obituary and his eulogy. That was really hard. You try and capture what an amazing, loving, kind, funny, and strong boy he was in just a few sentences or stories. Really the hardest part for me leading up to the funeral was handing over his clothes, knowing that this was the last time I would ever get to dress him and I didn’t even get to do that part. Of course we put him in a suit. Underneath he wore his Preston’s League shirt, his favorite fire truck underwear and his Batman socks. He looked so nice.
Abby was very scared about the funeral. We decided to have Preston cremated basically because I could not bear the thought of if we ever moved that he would not be with us. Abby was very upset about the process of this and actually until the day before, she thought she would have to watch it be done. It was a huge relief to her to know that she wouldn’t. I am also really glad that we had the viewing at the church prior to the Mass. I really did not think that we could handle it to do a separate viewing days prior. I think it would have been even harder on Abby. We had a car pick us up and take us to the church. The day prior to the funeral, the funeral home informed us that the Durham Police department called and asked if they could provide a police motorcade escort to the church. There were 4 police officers in front of our home that morning and we were so touched to know that they had been following Preston’s story and wanted to honor him in this way. We could not be more thankful. Preston would have been thrilled to see this happen. He would have thought that this was so awesome and it was. The girls were fascinated by how they drove in front and alongside of us and how the cars stopped for us to pass. Abby was cute a few times when cars wouldn’t slow fast enough. We could not be more thankful to the Durham Police Department for starting Preston’s Memorial Day off right. And it was a great distraction as well. We kept thinking about how much Preston would have loved it the whole way there and the reality of the day didn’t hit until we were about to pull in and 3 of the officers were standing in front of where we would turn into the church with their hands on their hearts. It was so touching. Thank you!
The actual viewing was difficult. We are so thankful for the portrait we had done because Preston did not look like himself. Abby was so upset by this actually wishing that they would have left him to look like he did the day he passed. It was very hard to see but at the same time made you remind yourself that this was not Preston, he was already in Heaven and this was just his body. None the less, it was hard, especially when we had to say our final goodbyes. The Mass after was lovely.
It began with us laying a cloth over his casket. Father Larry spoke about Preston. We are so thankful that he often visited us in the hospital and had a true sense of the kind of fighter Preston was and about our family. It made his words that much more meaningful. We wanted Abby to be a part of this service as much as possible and so she and our friend Kerry presented the gifts. She did such a great job. At the end of Mass, Abby escorted the pall bearers out carrying Preston with the tolling of a bell. I am sure most people don’t know the significance this was to our family. James favorite movie is It’s A Wonderful Life. He watches it every year with the kids. In the movie, they say “every time you hear a bell ring, an angel gets its wings”. In February when Preston was first sent home, Abby asked if she could ring a bell for him to give him his wings. While we were at Disney, we bought a bell that we had engraved with his initials and this year on it. That bell has been sitting in the box, praying to never have to use it since we bought it. Abby rang that bell all the way out of the church praying that she was giving her brother his wings. On Preston’s casket we had 5 roses with a green ribbon on it. 4 white for all of us and 1 red for him. After he was loaded into the car, each of us got to place the roses back on his casket. Abby was the last to put hers on and had just placed it to take it back quickly. She kissed her rose and put it back on him. It was the sweetest moment. Before they left with him we did a balloon release with all green balloons. It was great. Not one got caught in the trees. I can’t think of one thing that would have made the day better besides not having to have this day at all.
James and I are so thankful for all those that attended and for all of friends whom traveled from afar to be there with us for that day. It meant so much to us.
Thank you to Father Larry for rearranging your schedule to be there for us and Preston. It meant a lot to us that you performed his Mass. Thanks to church and for those who hosted the reception after providing food and making sure that there were no nuts because of Abby’s nut allergy. The reception was so nice. And thank you to Bonnie (my mother in law) for cooking such a wonderful meal for after the reception as well.
We know Preston’s ashes are ready but we are waiting for his urn to be delivered. Hopefully it will be in the next week. James was searching for an urn for Preston but really nothing was great. We wanted to find something that fit Preston and the things he loved. I looked up real quickly “truck urn”. The first website that popped up, I clicked on it and told James to look at it and said that this was it. It fit Preston perfectly. These were handcrafted wooden truck urns. They had several to pick from but we chose one that looked like fuel truck, which was Preston’s favorite kind of truck. He used to tell us how he couldn’t wait until he was older so he could drive one. James was worried about the cost, some boxes we would see were hundreds of dollars, but after looking for a few more, he agreed, cost didn’t matter. We know he would have loved this. This was perfect for our son. If you are interested in seeing what we chose, it is U7 on this site. http://www.gibsonwoodtrucks.com/urntrucks.html
Yesterday, the funeral home did stop by and drop off the things they had collected at the church and things there were extra of. They also dropped off his death certificate. It hurt so much to read it. 4 years old, never married, no kids. Life is just truly unfair sometimes. He never had the chance that so many people take for granted and yet many of these people complain about such stupid things.
I am very thankful that my mother in law has been taking Abby for her allergy shots. For some reason the bone marrow department shares space with the allergy department. Same check in desk, same rooms to get weighed in, and same rooms to sit and wait in for 30 minutes after your shots that Preston used to use for his clinic appointments. I am not ready to go there yet. Especially since I have a lot of anger towards Preston’s doctor and that department right now. We are not happy with how the day Preston passed was handled (not Dr. Martin), actually we are not happy with pretty much this past admission. Preston’s nurses are amazing and I am so thankful he had such wonderful nurses. No one on his team was working the day he passed and within 30 minutes of his passing, 3 of them were there and took care of him and us the rest of the day. They even packed up his room and brought us all our stuff. I am hurt and disappointed with the lack of communication from any doctor, especially Preston’s after his passing. No calls, emails, anything until the day of his funeral. To me, Preston should have meant more to them but it made me realize that to them, he was just another patient. Eventually I will have to get over not wanting to take Abby but for right now I am thankful I don’t have too. I would love to say thank you to Molly to from Child Life. She came in after Preston passed as well and did hand molds of us with Preston. We will treasure these for ever and ever. I am so thankful for these memories we will get to keep.
Quickly I wanted to say something about the day Preston passed. Besides being annoyed with the doctors working that weekend (both night and day) there were a few things about that day that we will never forget. Preston’s mouth had been bothering him a lot the night before. They called the ENT in the morning to have her come back and do another injection. In the meantime, we asked that his pain medicine be increased. Preston was very thirsty that night and requested some of his favorite drinks. Coke, pink lemonade, and even asked me to make him chicken broth. All he drank and later threw back up but it made us happy that he wanted these things. I fell asleep next to him first and in the middle of the night, he asked for James. In the morning around shift change time we switched again. Around 10ish that morning his breathing started becoming very labored and he was saying his belly hurt. He had not peed since around 2am. They had already given him Lasik and it did not make him pee. He was very agitated and after a while of seeing him like this and telling the nurse working that day this was not normal, she paged the doctor. He did not come but sent a fellow (not friendly at all) whom ordered a chest x-ray and another medicine to make him pee and left the room. A while later Preston was becoming more uncomfortable and another nurse was in our room. I asked her when the doctor would be coming in and she said that he was doing rounds right now and our nurse was in talking with him about Preston. I freaked out. Here we were, watching our child being very uncomfortable and complaining about his stomach which he never does and he is doing rounds on all the patients on the floor. This poor nurse though, it seems like every time something happens with Preston she is the one in our room at the time I take it out on. She went and got our nurse and the doctor so kindly finally came in to stand at the end of the bed and tell us Preston was uncomfortable but his chest x-ray was clear and we need to make him more comfortable. He suggested going up on his pain meds by .5 more. I basically told him he was wasting time because we increased by 1 last night and he was still uncomfortable and I didn’t believe .5 would help. He decided to increase his pain meds by 2.5 and then about 30 minutes before he passed, we asked to increase it again. About an hour before he passed, James was sitting with him, holding him, reading him a book. James is known with the kids to make up parts of a story or an ending to see if they are paying attention but this time he was just reading the story as is but Preston must have thought he was kidding in a part because he rolled toward James and said “funny joke daddy”. He was calmer and we all thought the pain medicines were working, he was finally comfortable. He said he had to go pee and we told him it was ok to go in a diaper. He said he really had to go and again we told him to go in a diaper. He said “I want to pee regular”. We were happy. He needed help to stand up so James and I both held him as the nurse held a jug. He happened to go a tiny bit #2 in the diaper so when we laid him back down, I cleaned him up and put a new diaper on him. James was holding him with his arm around him, holding his hand and I held the other hand and was rubbing his leg. Not even 3 minutes later his heart stopped. Maybe 30 seconds after, his heart beat came back for just a few seconds, and he squeezed James hand tightly, and that was the last breath our son took. We are so glad we were both there and he passed with us holding him and loving him. Since he was becoming more comfortable, James was thinking about running downstairs to grab a pizza. Thank God he didn’t. We are so proud of every last bit of fight and determination he had in his body, even to try and pass with dignity and go pee regular. We are so thankful that our nurses were so wonderful and they gave us as much time as we needed with him after. We called and had the girls come so they could come and say goodbye. It was truly the worst and hardest day of our lives.
James had to go back to work this week. The first day back he walked from his office over to south tower. He called me to tell me he was not sure how he felt. Two weeks prior we had taken Preston for his last walk on the same path he was walking. He was happy to be thinking about it but also sad at the same time. I am sure he will have lots of days like this working in the same buildings that Preston received his treatments. Honestly, I am not sure how he is doing it. I can’t even take Abby to go get a shot twice a week and he has to work there. He says he is glad because he has those good memories and those are the ones he wants to remember. Two days after Preston’s funeral we took Abby to swim practice and then we went to Target trying to just get out of the house. We got a bunch of things and as we were leaving I see him standing looking at Imaginext toys on an end cap. He turned to me with a toy in hand with a smile and I stood there watching him and the only thing I could say was “what are you doing”? The toy dropped and he looked at me with his face instantly changing. He said “I forgot, this sucks. I just wanted to get him something to make him happy”. I started crying and here we are making this scene. I wonder how many times things like this will happen. I know Abby has forgotten and it is over Stephanie’s head. She gets in the car and says “going to see Preston now at hospital”. I wish this was a nightmare we could all wake up from. This really does suck.
Thank you to everyone who sent flowers and plants, they were all very lovely. Thank you to those who brought over food, edible fruit, sent pictures, presents, and made books, and we love the star that was adopted for Preston too. It has all been so wonderful. Thank you to everyone who has made donations as well. If you sent donations directly to an organization or deposited into Preston’s account, please let us know so that we can thank you. Donations that have been mailed to us, we plan on splitting up among the three. I wanted to tell you why we chose the organizations we did. Big Love was an organization that helped us out while we were in Houston. Every week while you were inpatient, you would fill out a list for up to $25 worth of groceries, toys, or anything you needed and the Big Love volunteers would go get it and bring it to you. It was so helpful. I would love to someday start something like that here at Duke, someday when I have healed more. Meg’s Smile was the organization that was planning on doing the mini make a wish for the day for Preston. They had organized a day at a fire department and construction site. Preston would have loved that. When we had to cancel, Meg’s mom brought toys for the all of the kids to the hospital room and put his wish day on hold until he was better. Hess Trucks and games for Preston, craft stuff for Abby and Mickey stuff for Stephanie. Great idea to cheer up all of these kids. We also chose Tim Tebow W15H foundation. As you all know, Tim invited Preston and our family down to Tampa. Technically it was not considered a W15H but seeing how much joy this day brought to Preston and our family, giving back to this program is important to us. We are so thankful for everyone’s kind support and prayers. What we are going through is terrible and you all have been so kind. We know we have many, many very hard days ahead. It is nice to know there are so many people that care about us and about Preston.
Thanks to my mom too for taking care of all the flowers and planting everything for us. It looks great. And thanks Nana for all the great meals and to the both of them for all the help with the girls.
We miss you Preston so much. We love you, you’re the best!
There are a few funny things that we wanted to share. We are so thankful for our girls right now.
-At Preston’s funeral during the viewing, Stephanie was a little crazy. She had woken up around 3am that morning and did not go back to sleep. There is a family here in Durham that we are very close to and they have 3 girls. They love Stephanie and Stephanie adores them. Stephanie came running up to James and I and said “oh no, where are my friends” and yelled “friends, where are you”? It made us laugh and James said to her “Stephanie, mommy and daddy are your friends”. With the most serious face, Stephanie looked at James and said “I a baby, you big” and got down and ran up the aisle to find her friends.
-During the actual mass, Stephanie was getting ancy. I had brought some fruit treats, fruit roll up’s, crackers, and some Mickey board books. My sister in law was holding her right behind us. Stephanie was asking for gum and Claire gave her one of the books. It was silent in the church and Stephanie yells “Mickey Mouse, Donald Duck” and then said it again in a much lower voice. This is one great thing Stephanie provides our family. She can always make us laugh.
-I had promised Abby that we would do build a bear a few days after the funeral. We were on our way to the mall when James spotted a rainbow. It was faint above the trees. James said he would like to think of it as a sign from Preston that he was saying hi. Abby said “why can’t Preston make the rainbow bigger”. A few seconds later we went around a curve and there the rainbow was again and it was huge. Abby said that was a good sign but could we ask Preston to make it brighter? Since then Abby says Preston has been sending her lots of signs. That same night, we saw lightening bugs for the first time. We have not lived anywhere where we have had these in over a decade and it was the girls first time. Every night she has been looking for them.
-At Target over last weekend we decided to buy the girls a sprinkler. I wanted to get a big plastic pool or a slip and slide but James said no and that sprinklers stink too but agreed to get one. (I wanted something to play with the girls at home for all the days when I will not feel like going to the pool). The next day we got the sprinkler all hooked up and it stunk. It barely sprayed one foot high. It was supposed to be this crazy sprinkler and all these shoots off it. James tied a lot of the shoots off but it still stunk. The girls loved it though playing in the water as it ran down the driveway. My mom had brought 2 others sprinklers with her when she came to visit and we hooked up one. It sprayed back and forth really high. Abby liked it, Stephanie hated it and they liked the first one better. So we hooked up the third sprinkler. It was a circular sprinkler that maybe shot up 2 feet in the air. This one was a hit. The girls played in climbing up and down the driveway pretending to climb over the big Fountain of Terror. This was hilarious because this water was pathetic. We were sitting up on the porch and James joked that we should call the news so that they could see what we were doing now, that we make fun out of every situation. Abby yells to James “daddy, please don’t call Grace and tell her to come over”. We laughed and he asked why. She said “this is fun but it is embarrassing”. We really started laughing and I told her we could turn it off. She then replied with “well I guess it is not that embarrassing”.
Here is James eulogy if you are interested in reading it:
Preston James Winslow Eulogy 5-25-2012
Celeste and I want to thank you all for coming. The thought that Preston has touched so many hearts is very comforting. One might think that the struggle our family has undergone for the past two and half years would have led to much misery. However, despite drastic lifestyle changes, we were actually very happy most of the time. Really, the only unbearable aspect besides the separation from each other was the specter of today. That we could have fun at all is entirely due to Preston. He was so very easygoing and resilient. He rarely complained, and had an uncanny ability to deal with medical poking, prodding, and poisoning. Preston’s sense of humor and predisposition toward laughter was invaluable. That today is so painful is only a testament to the pleasure that came from Preston’s presence.
For those of you who might not know, our family is fond of good-natured teasing, and Preston was as good at it as any of us. For example, when I would tell Preston something like his urine was so smelly that it could make a garbage truck explode, he would come back with how meeting Tebow would make me so excited that the nurses would have to change me. He would regularly use his high-pitched mommy voice to tease her about how much she loves the movie The Burbs. He thought his sister’s reactions were hilarious when he would pretend to whistle a song playing on my phone, while pretending he was really whistling, while pretending he was fooling Abby. One of the phrases he said so often was “funny joke, dad” whenever he recognized that I was teasing him. That was actually one of the very last things he said on Saturday.
Anyway, here is a story that some of you already know, but it is typical of how Preston made us laugh. After watching fireworks at the Magic Kingdom, the monorails stopped running to Epcot, where we had parked, and so we were forced to take a Disney bus; Preston was the only one of us excited about taking a bus. The ride was bumpy and my dad and I joked with each other about how badly the bus driver drove. Preston said we shouldn’t pick on him and that he was a good driver. Two days later, we stayed for fireworks once again and coincidentally ended up taking the same bus with the same driver back to Epcot. As we left the bus, I told the driver how Preston said he was a good driver. Preston agreed and the driver said “thanks.” As we walked away, Preston said “aren’t you glad I didn’t tell him you said he was a crummy driver?”
Preston was an amazing little boy, and although we can’t help but feeling deprived, every minute we did get to spend together was an absolute blessing…a blessing magnified by our knowledge that those minutes were likely numbered. We miss him immeasurably, and look forward to a time when we may meet again.
We love you Preston, YOU’RE the best!