I received this update today from my cousins, Phil and Amy. I have often thought of them this last month and wondered "how are they really doing?" Here is her response, and it is heartbreaking. Please join me in lifting up this precious family in prayer.
Dear friends & family:
It was 4 weeks ago right now that we spent the last hour of Dylan’s life. Once I woke up and realized what this hour was (4:00 a.m.), there was no more sleep for me. So here I am, trying to describe what this last month has been like for us. Many of you have asked how we are doing through calls, emails, etc. We don’t want to avoid answering the question, but it is also difficult to do so on a daily basis, so here it goes…
The first week was a devastating whirlwind. We had done what we thought was a lot of planning 3 years ago. We wanted to have it “done” and not let it hang over our heads for the rest of Dylan’s life, so we could Live. That was a good decision, but we wished we had taken it further. We planned things like which funeral home to use, bought the plots in the cemetery, decided to do a private burial and a huge memorial, and planned the balloon release. What we didn’t know is that there would be a thousand other decisions that would have to be made. Some were made very quickly, such as what clothes to bury Dylan in. He wore his Christmas sweater. I had bought matching sweaters for the boys at Old Navy, and had nearly returned them as being unnecessary. Dylan’s was red and Jackson and Conner’s were gray with a black stripe. The three boys wore them to the Christmas Eve service at church. The big boys wore theirs to the burial. Unbelievable details.
Now is about the time that we got the boys out of bed to say goodbye to their brother (4:50 a.m.)
Many decisions took a long time. How do you write your child’s obituary? It is unspeakable. Literally. Lisa wrote the first draft, or I never could have put a word to paper. We also needed to select photographs to use at the services. How do you reduce 5 years of your child’s life to 30 photographs? It was impossible. So we finally settled on 350. Delisa whittled it down from over 2,000 and then Amy went through them twice after that. So many people did anything and everything possible to help us during that planning time. Trisha – there are no words, my dear friend. You were there in the beginning, and you promised to be with us until the end, and you didn’t miss one single step. We will be grateful to you for the rest of our lives. Delisa – you are my rock. No way to say enough. Dick – you prayed that God would “show up” because we needed him. He did, or we never would have made it through that week. Your words were just right. Thank you.
Amy’s sister Laura had come to visit from Charleston for the first time in two years. That ended up being Dylan’s last night. We were in the middle of the movie P.S. I Love You that night. It had a whole new meaning when we finished it almost a week later. It was so helpful to have my sister here. Certainly not the visit we had planned. Laura and Katie and Delisa created a system in the chaos and handled everything at home, while Trisha led Phil and Amy through the fog of decisions. We spent time on every detail because we felt it was the last thing we could do for Dylan. We wanted his Memorial to be beautiful. It was just like we wanted it.
John – the DVD is stunning. We will mail it around to family members to watch (and return to us). If you couldn’t make it to the Memorial Service, you can watch it on Phil’s YouTube account at http://www.youtube.com/view_play_list?p=8B519F0ED97D701D. Please listen closely to the words of the 3 songs. Deb wrote “Dylan’s Song” for him 4 years ago, “Homesick” is our heartfelt prayer, and we know that Dylan is now “Dancing with the Angels”. People have asked how many balloons we released. There were 500 and they filled the sky.
Our extended family members were in absolute awe at the support network of friends and neighbors/friends that surrounded us. Delisa and David opened up their home, and friends and ALL of the neighbors swooped in with food. Angie & her sisters cooked a feast. Amy’s family from Illinois just couldn’t get over it. You Neighbors have not missed a Wednesday night meal in over 4 years. Inconceivable. Thank you. Larry and family want to “steal” our church and take it to Evansville . Special thanks to many other friends – you know who you are – from helping to pick out flowers, helping to pick out clothes for the services, etc. More to come later on how we made it through Dylan’s birthday on January 16.
5:11 a.m. Dylan’s time of death. Sophie just woke up and cried out. That sweet baby is the most intuitive little being. She is grieving also. In just 18 months, she has lost her birth mother, her foster mother of 7 months, and now her brother. And she just doesn’t understand. I am so sad for her, but INFINITELY grateful to have her here. What would I do with empty arms, after carrying Dylan around for almost 5 years after birth and 9 months in utero? Sadly, Phil needs Sophie’s snuggles just as much, but she’s not giving them. She has never been a snuggly baby, so you just have to take it when she’s willing. She was quite mean to Phil for 3 weeks because she was being totally a Mommy’s girl, but has been better for the last week or so. Maybe God knew I wouldn’t survive it without her clinging to me. When she sees me cry, she stops what she’s doing and walks to me with her arms stretched out.
We went through all the stages of grief in the 4 years since Dylan was diagnosed. Denial, Anger, Depression, Acceptance. Bargaining is in there somewhere and we did that too. We grieved for the loss of our healthy little boy. We grieved with each loss of ability, with each “new normal” that was less than what we had before. Around Christmas, Amy had started to grieve the fact that she wouldn’t be registering Dylan for Kindergarten in the spring. There was constant loss and grieving. But we still had our “sweet boy” (which is what we called him) in our arms. And now we don’t.
So now we grieve for the sick little boy that we wrapped our arms and lives around. He wasn’t physically whole, but we tried to love him enough to make up for it. I really don’t think a child has ever been kissed more. A woman sitting behind Phil in church one day asked him if he knew how many times he had kissed Dylan during the service. He said “I don’t know. A bunch”. She said, “Probably 100”. That was in an hour. But now we start over with Denial. This is such a physical loss for us, because we held him so much. We are in shock that we will never hold him again. Our grief counselor said it can take up to 3 months for it to really sink in. Of course we knew this was going to happen. But there is no way to be “ready”. You can never be ready to lay your child’s body in the ground. I know he’s not there. But the little body that we touched and kissed is there.
There is no comfort for us in not having to care for Dylan now. It is much less busy, but not a welcome relief. Phil realizes that so much of his identity was wrapped up, not in work, but in being “Dylan’s Dad”. And he was such a good Daddy. No man could have been more involved or loved a child better. He feels somewhat “without purpose”. It is hard to explain how our lives (and even our house), were wrapped around Dylan’s care. After he died, there was not a direction we could turn our heads and not see some painful reminder of Dylan’s life and care. His medicines was all over the counter tops, the cabinet was full of bottles, there were notes on the inside of the cabinet of food ideas, there was a tub of neck pillows and positioning devices next to the couch, there was a basket of diaper changing supplies on the other side of the couch. That’s just the living room area. Not to mention his chair. We moved it yesterday. It sat there just like he had left it for weeks. We finally folded the blankets and pillows into a stack. Yesterday, I washed the comforter that was on top of it (and forgot to put it in the dryer, I now realize). We can’t get rid of the chair, so we are going to have it recovered and use it until it collapses. We are getting a bigger kitchen table, so it will fill the spot where his chair was.
Amy finds one point of relief. I had stressed and grieved for so long over “not knowing”. Not knowing when, not knowing how, not knowing if he would be in pain, not knowing if he would know us, not knowing if we would be with him, not knowing if we would be in a hospital with tubes and monitors everywhere, not knowing if it would be chaotic or peaceful, not knowing how much more we would lose. Now I know.
We would have asked for more warning for our own sakes. But for Dylan’s sake, it went the best way possible. And now I know that. So in that, there is relief.
So how are we really doing? We have been living our worst nightmare for over 4 years, and it is not time to wake up. But we are getting out of bed and getting dressed, so what more can we ask for? People have been faithful in praying and continue to offer support in many ways. We know the prayers are there, because how else could we be functioning? The big boys seem to be doing well. We hope it’s not just Denial, but the grief counselor will continue to help us monitor them. Phil’s pain is every bit as big as mine. I think that’s hard for people to understand. Women are relational beings and men want to fix it. This can’t be fixed and there are no words, but please be there for Phil as well. This will be a long road ahead.
Please continue to pray for us:
+ For strength, to survive.
+ For peace
+ For Jackson, Conner & Sophie to deal with their grief and not suppress it.
+ For Sophie to give Phil her snuggles and fill his empty arms.
The website is http://www.caringbridge.org/visit/dylanmay.