A Little Boy and The Lessons He Taught

This is continued from my last entry---

So Dylan got to come home and for the first few weeks things seemed to go on as normal. I spent every Tuesday with Elizabeth, getting her to and from school and back home when the rest of the crew returned from Dylan's weekly chemo treatment. Mom and I would also just run over there when we had a free minute to give Sara a break. She needed them desperately and with her son just given a life sentence she didn't leave him with just anyone.

About a month after diagnosis Dylan started to take on the "Cancer Look." If you haven't watched anyone with cancer you may not know what I am talking about. Dylan became very swollen from the steroids he was on, became very angry and hard to control at times, and of course his entire household was an emotional wreck. He started to loose control and eventually use of his legs and was not able to walk anymore. He was having a hard time eating and swallowing and eventually the docs decided it best to give him a feeding tube. Dylan was NOT thrilled. The steroids made this boy a live eating machine as he could now put any grown man to shame with how much he ate, plus his feedings through his G-Tube.

In the mean time things at my house grew more and more hectic as well. I went from three kids (one a special needs baby w/ appts at Riley himself) to seven, yes SEVEN kids. At this time we were also in the home study and interview process to get Alecia. So things started to get VERY crazy. We (I almost single-handily) was in charge and managed several fundraisers for Dylan's medical expenses. I hosted a benefit yard sale in which I managed to come up with nearly 900 dollars for Dylan's family and also a popcorn drive in which a total of 500 dollars was raised.

I began to have some heavy, heavy feelings as we were awaiting the arrival of Alecia and trying to "celebrate" that while at the same time I was watching my cousin and best friend slowly loose her own son to something that nobody had any control over. I was nervous and didn't want to talk to Sara about it as I didn't want to brag about my newest achievements as she was starting to say "Good bye" to one of hers. So we chose to celebrate quietly and in private so we wouldn't offend anyone.

But it never failed, each time we saw Dylan and Sara, they were SOOO excited for us it brought me to tears. In the midst of their tragedy they were so, so welcoming to her. I don't know I could bring myself to get past my selfish and human ways to be like this. But that was just the way they were. Several times Sara would try to take some of Dylan's medical funds and help others. She said they may need it more than Dylan did. It was given to her so she has to give as she sees it is needed. Always thought about others all the while fighting her own demons. They had become my inspirations.

The community rallied around this family and it was a remarkable the impact he made on others. We met some other cancer kids and their parents. Laken and her mom were saints and nothing less. She was so knowledgeable of childhood cancer and shared it all within just a few minutes. Christy and Ty were so helpful in raising funds and being there for them.

Things just trucked along until mid December. Dylan was scheduled for an MRI to see what type of effect the chemo had on the tumor. I got the call from Sara--I remember it was the evening of the school Christmas program. She told me to get my mom over to her mom's house b/c it didn't look good and she wanted somebody there with her mom when she was told the news.

THE CHEMO DID NOT DO ANYTHING TO THE TUMOR!!! IT HAD GOTTEN BIGGER!!!

That in and of it's self was unbelievable to me. You see I was fully expecting a miracle. My miracle; I believed was that when they would go back for a 2nd scan the tumor would be completely gone. I guess that was not God's will. Why He didn't listen to me I do not understand. I guess it has something to do with Him being in charge and not me. I have a hard time grasping that sometimes.

So after some consideration Dylan's family decided to try radiation. They were fully aware of the effects it may have on Dylan and how detrimental they can be. But at this point it was having to choose the lesser of two evils. Now Dylan would have to stay in Indy all week and get to come home on the weekends. Dylan finished his first week of radiation and came home that weekend. Everyone made it a point to visit Dylan for those two short days.

I was blessed with the opportunity to see him twice. One of those times was unplanned. Dylan's Nana, my Aunt Susie was on her way to Sara's on Sunday b/c she was going to Indy with them this week. On her way over her car broke down and she called to see if I would take her to Sara's so she could ride with them to the hospital. Of course, I said yes and we shared many tears over Dylan during the 20 minute trip. When we arrived Dylan was camped out on the couch. I got to snuggle with him and lie down next to him for a good while as they were packing the car to get on the road. I gave him many, many hugs and kisses and numerous high fives. I buckled him into the car and followed them out the drive way. They headed north to Indy and I headed south to Jasper. I didn't know that would be the last time I got to talk to him.

Dylan took Monday's treatment and they went back to their Ronald McDonald apartment that they had been assigned for their stay. Tuesday they woke and got Dylan ready for that day's treatment. Sara couldn't keep him awake and said, "I don't like the look in his eyes." She told the nurses on the oncology floor and they postponed any further procedures until the docs could look at him. They did another scan and found large amounts of swelling on Dylan's brain. At this point they assumed that the shunt they had previously inserted into his head to keep the swelling down had became infected. So the neurosurgeon took him into the OR to take a look. They removed the shunt with the intention of putting a new one in but decided against that once they got in. They brought him out of surgery and told Sara that he would probably pass within 24 hours.

Dylan was taken to the ICU floor where he was given comfort only measures as the family wanted him to go peacefully. The hospital staff got molds of his hands and the family took several pictures. This is December 23. We got a horrible ice storm and one of Dylan's uncles (my cousin Joey) wasn't able to make it to Indianapolis. Joey came and hung out at my house for a little bit so he wasn't alone. The next day, Christmas Eve, Sara noticed Dylan's stats dropping and then they pick back up for a little bit. She knew he was fighting; but she also knew this was something Dylan could not win and he didn't have to be a hero. So Sara did one of the most gracious and unselfish things she could as a mother. She called Dylan's teacher,whom he loved dearly and said this the end; please say good bye. Sara held the phone to Dylan's ear so he could listen. (They said hearing the last thing to go so while he had never woke up from surgery the previous day they took comfort in believing that he could still hear them.) Then Sara picked up her baby and rocked him while they were surrounded by the immediate family. They all said their good byes and then it was Sara's turn. She told him, "Dylan, I know you hurt and I know you are tired. We are OK. We know Jesus is coming to take you and you may be scared, but Dylan you know what is there and you know about Heaven. I love you and will miss you, but you can go now." Very quickly Dylan's heart rate dropped and he left us. He was waiting for his momma to tell him that.

How a mother can be brave enough to utter those words is beyond me. I truly don't know if I could do this. While I would never want to be in a state like Dylan was, if it was my baby I just may keep them with me physically as long as possible, for my own selfish reasons.

Sara called me when she got home and asked me to come over. I didn't want to smother her and I knew that she would fielding swarms of visitors and well wishers. But she had requested so I went.

I helped her manage everyone that came over and late Christmas night she looked at me and said, "We have to plan Dylan's service. We need to pick out what he will wear, find some pictures and songs and decide on things so we can let the funeral home know." I took that as my cue to exit so her and Kelly could get started on things. And then she told me,"No, Jenny; I mean WE, me and you." I was floored. I was being asked to help plan a funeral...what? But I accepted and was honored beyond words to help her plan a memorial service for her little boy. She even asked me to write his obituary. I graciously accepted the invitation and we got to work immediately. I enlisted help from a friend who had lost a baby on her ideas and she was a huge help. Now many people have been asked to be in the delivery room and I would be honored to do that; but if you ask me, helping a parent honor their child at a funeral is much more special. So we got to work and we had many tears and laughs as we found funny pictures of Dylan and shared some of our favorite memories. I was asked to share a poem about Dylan and one of my foster kids even wrote a piece for him. It was such a blessing.

The service was as perfect as a funeral could be. We would laugh until we cried and cry until we laughed and I know that Dylan would have wanted it that way, he was always trying to pull a fast one one somebody.

My children know all about Dylan. Now Alecia only met him twice and I think Tomas was still too young to actually "remember" him physically being here. But they know who he is, they can point him out in pictures and they know all about how Dylan got sick and had "a yucky brain" and went to be with Jesus and God. Every night when they say their prayers they ask God how Dylan is doing and Tomas asks God to let Dylan know that he caught a fish. Alecia prays for all the kids who have a sick brain and asks God to help find a way so that no more kids have to die. For this I am thankful. This has taught my kids compassion and trust in the Lord. Things that aren't the same without life experience.

Dylan will always have a special place in my heart, in lots of hearts. For a six year old has taught me to love everyone, not take things for granted, be giving of myself and to live life the way God would want you to; because you never know what tomorrow may bring.

My prayer about Dylan:

Thank you Father for giving me the time to spend with such an amazing family. This tragedy has brought us so close together and has showed us strength and taught us a lesson in compassion, hope and charity. I miss Dylan greatly and You know that God, but I take comfort in knowing that he is in Your presence and is healed by the Great Physician himself. And that Lord is greater than anything we could have done for him. Lord there are still loved ones struggling to see Your work in this; I pray that their hearts may softened and that they may open that door and let You in. Please watch over this family in the coming months as it is going to some of the hardest with the one year of Dylan's death approaching and the birth of his little brother, Riley coming so soon. They need Your comfort and strength at this time Father. I thank You for my salvation and blessings and the people that You have chosen for me to spend my life with.

In Jesus Name

Amen