Two weeks ago, on Sunday, we returned to our church for the first time since Sam's service. We hadn't been avoiding it, we had simply gotten out of town for a few days after the ceremony. We certainly were not under any illusions that this would be easy, we knew it would be hard but we knew we needed to be there. As usual, our church family was perfect... just the right amount of love and hugs, but not so much that we felt bombarded. I know, without a doubt, every single person there would have gladly offered up yet another hug and condolences but we were given the space to breath and cry... we love our church.
I had feared seeing the sanctuary without his beautiful red "bed" down by the pulpit would send me into a spiral, but it didn't. I had feared that the church we so dearly love would become a place of terrible sorrow for us with memories of pain and the tribute to our beautiful baby boy. (Yes, he will always be my baby boy even though I can hear him correcting me and saying "Grrrr.... I'm 6 years old mommy... you know that don't you... you know I'm a big boy") I was relieved when we stepped in and I did not crumble (immediately anyway) and we walked to our normal pew where my parents were already waiting. We sat down and then it started... the music... "Come, Now Is The Time To Worship." This song is sung thousands of times across the country as believers gather to praise but for me it was a "trigger." For many who sit behind us at least (Mr. and Mrs. Atterbury for sure) will understand why. You see, Sam was always an active boy, one who was not interested in anything that wasn't "interesting to him" and grown up church was no different. Every Sunday for as long as I can remember Sam would want me to pick him up during the opening worship song and he would sing with me. He would sing the whole song. Many time with his feet swaying around kicking me and the pew in front of me and with his head buried in my neck and shoulder. Over the past several months I started to cherish this time, even before he was sick. I knew it wouldn't be long before I wouldn't be able to hold him and have him cling to me much longer... although I had no idea it would be so permanent. This was a weekly ritual almost for he and I, then I would walk he and Ava down to the front for Children's Time and I would cross my fingers they would let the leader speak without interrupting and most of the time Sam's hand would be the first in the air with answers to any and every question posed to the group... I would sit and hold my breath... "Oh boy, what's he going to say" I'd think. Now, I have yet to be able to walk Ava down front for Children's time. So many times in the last few weeks I have had others comment about the first few weeks when we attended FCC (around Easter in 2012, Sam and Ava were 3 1/2) and how during Children's Time when they would begin to bow and pray Sam would shoot his hand in the air (this kid was like lightening) and say "I have a prayer! I have a prayer!" It was a simple prayer they always said at St. Peter's Daycare before meals: "I bow my head and softly say..Thank You for the food today... Amen" It's such a seemingly small memory, but to me it represents thousands like it... I am grateful others remember moments like this too. It helps.
During the service two weeks ago our Pastor, Ed, who never misses a mark and always speaks into the deepest part of me, even when he has no idea he is, spoke his final message in a short series that was planned prior to Sam's passing... on Deuteronomy... on transitions in our lives. While he also spoke of marriage, job changes, growing up etc.. he also spoke of loss, tragedy and the transitions we must face. Largely and suiting to our congregation at the time there was a focus on how to grieve. Or maybe that's just what I was focused on, either way... it was a hard message to hear, although beautifully appropriately spoken. He spoke about the need to get it out, the grief, the pain, the anger ... the questions, the memories, the good along with the bad and slowly healing with start. "Healing" could be a whole additional post, but I will just say for now I am sure "healing" will likely never happen... only a learned ability to manage to grief. He talked about ways of getting it out and when he said "journaling" I looked away once again... wiping the tears, trying to breath. It is no secret that journaling helps me. It is the one way, I feel like I can get some of it out. In the past, I would be an emotional mess for a full day after writing but this time I'm hoping to have an opposite reaction... here's to hoping.
So, here I am... to worship, to bow down, to say that You are My God... but that I am hurt, I am in pain and why I do walk through this dark valley I know you are with me, yet I am fearful... I fear letting go of the pain, just as much as the pain itself. The pain helps me keep Sam close... although for Ava, for Matt and for myself I know I need to manage this better.
This Sunday, the 19th, will mark one month since Sam passed. My pain and Matt's pain pale in comparison to what Ava deals with. We have followed the guidelines in how to handle this yet I'm not sure anything will truly help. Throughout the last year, I have commented on Ava countless times; she has been a rock for all of us even when we didn't even realize we needed one. The bond she and Sam have is beyond any understanding I will ever have. Not only were they twins, they were and are best friends. Ava has lost both her brother and best friend. I have felt like we have been honest with Sam and Ava all along about treatments and cancer... then after Sam passed she asked why we hadn't ever told her that cancer can kill people. I was left blurry and taken aback... here I thought we had been protecting their innocence and trying not to add to their fear yet from her eyes I hadn't been truthful. It hurts. It hurts so much, because she is right.
Now, I am not saying I think we should have told them this all along, but I do wish it wouldn't have had to come at a time when Sam was so sick already. Ava has confessed a great deal to us over the past few weeks. While I think it is good and helpful for her to talk about it, it breaks me down every time to hear what she has to say. It isn't all about Sam. Some is about her anger and hurt toward me. She has several times now said in a serious, non-dramatic, tone that she feels like we love Sam more than her. While it pains me, I understand how she could feel this way. We have tried over and over again to reassure her of our devotion to her as well over the last year but the fact was that Sam was sick and needed me there too. We spent so much time away from home, starting last January when we went to Jacksonville, FL for proton treatment and were away for a month. She came with Matt and my Dad for a visit mid month and she had no idea the tears I shed wanting to keep her with us for the remaining of the month. But we decided it was best for her to stay at school and Sam was getting weaker each day of proton and his schedule wouldn't have been conducive to keep her occupied too. We would do everything we could to try and spend special time with her... Matt called it the divorced parent syndrome was now in effect for us cancer parents. We always wanted to maximize our time together, and so did everyone else. It's one more of the additional impossible situations of pediatric cancer... siblings who love, care and fear... too. Fast forward to Sam's first relapse, we were told then it was a grim situation... time to call the family in so to speak... Sam was in terrible pain and we were in the hospital weeks a time. When we got the dreaded news, we saw how much better we all functioned when Ava was with us. I was able to take her for dinner alone, she took walks in the park with Matt, she stayed with Aunt Judi and most of all she was Sam's "Best Medicine." Sam would perk up so much every day she was there and when she wasn't he was always wanting to know "when's my Ava going to get here?" " I wish Ava was here." She was his best friend too. He loved her every bit as much as she does him. Ava was healing for Sam, he was always better with her by his side.
I believe the hardest part of his transplant was not being able to see her for so many weeks. I took a few nights - one here and there - away from the hospital once actual transplant had been completed and spent some time with her, but it was always such a logistics equation to get her to the right place at the right time in order to maximize time. We were and are so blessed to have so many people who love us and were eager to help. We only let her go where we knew she would be cared for and loved at the same level as with us... she, on paper, had a great summer. She spent weeks with Aunt Tracey in country then to Uncle Jeremy in KC and to Nanny's in KS with breaks at home between each. She went to two different VBS's and learned to play hockey with cousins then did dance camps with Nanny... she had fun, truly she did, but she missed Sam and us. From her eyes, we were choosing to be with him versus her. The video of Sam running to her when he busted out of BMT was so precious... he didn't care about that banner or tearing it, he was going for his Ava.
From that point on, we were back on the rollercoaster. Soon, our full attention was back on Sam's care and while we tried to still focus on her schoolwork etc... it just wasn't possible for us to be in two places at once. I would talk to her on the phone or facetime but I would loose it as soon as I got off the phone. We missed her so much every time we were gone. The fact is, this stupid cancer spreads it's side effects all over the rest of us too.
Since Sam's passing, she has shown us over and over again how strong she is... she amazed us when she asked to speak at Sam's funeral. Then for her to handle herself and speak as she did was pure organic strength... I could not give her that, we could not... that was all "My Ava."
Ava has had a few play-dates and even a sleepover in the last few weeks, in hope of building stronger friendships for her and keeping her occupied and excited. Each have come with a let down where she feels like she's cheated on Sam somehow by having fun with someone else. Even saying to me once after dropping her friend off that "the fun never ended with Sam." She was right... she always had a playmate, she wasn't/isn't used to being alone. After all isn't that one of the advantages to having twins; a constant playmate... a forever playmate... a built in best friend??? Her heart ache for her brother makes mine break off a little more every time, then for her to feel we haven't loved her as much as him just demolishes it. She told us this in honesty, in a sorrowful place not in a dramatic attention seeking way. This is how she felt or may still feel. I pray I can prove to her that her suspicions, while understandable, are not, nor will ever be true....
Last weekend, Ava began to hyperventilate and had a very broken heart... one I couldn't fix. She begged not to go to church on Sunday morning, begging for a family day. Matt has gone back to work a few days before, this was one of those times we needed to listen... just listen... she was trying to tell us so much more. We took the family day and had a good time. Over the last year; I have devoted everything that I am and all that we have to Sam's battle, and now it's Ava's turn. Unfortunately, her battle will last a lifetime, although like the rest of us, she will learn to manage it. Because of this I have chosen to resign temporarily from my career to care for our family... again. Ava, first and foremost but the rest of us too.
My company, ALDI, Inc. has supported me for the last year. I have been able to remain on insurance for that time with minimal work from me. I had been allowed to use my company car throughout the trips back and forth to St. Louis and have been shown unconditional support from my coworkers, team members and leaders. I knew when I took the initial leave of absence that I had a year. That year came and went with destructive force and left me a different person. I need to heal... I need to be there for my family to heal... or at best manage while supported and wrapped in the love and support we need right now. Therefore, I resigned. This was yet another "side-effect" of stupid cancer... I have a had this career for over 12 years, I have developed bonds that will last a lifetime and for that and everyone in the OFA office and beyond I am grateful. I have the option to return when the time is right and for that I am also grateful, Thank You.
I will use the time while Ava is in school to focus on my promises to Sam. To always 'let his light shine.' I am working on the necessary IRS requirements for his foundation and am already working on his projects. His 100 Day's of Comfort has proven to be an amazing way for me to physically see the love for him while giving his love to "all the kids." I am excited to see the finished products... Sam was amazing. These packs will be something we keep doing in his memory with the foundation. Thank you for the hundreds of donations, I take a lot of relief and even some excitement in getting to do this for him and it's all because of so many of you who have taken the time and effort to support the wish of a six year old boy. Thank you!
I know I have spoken a great deal about our Pastor in these blogs, the fact is that he has also been a strong, loving, smart support as well from the first few days he has been with us. I take great comfort in listening to him Sunday's (or any time really, he's brilliant) It occurred to me that I have never shared what has helped me so many times before. Here is Pastor Ed's sermon blog spot... just typing Pastor Ed makes me think of how sweet Sam would say his name... he loved him too. http://edvarnumsermons.blogspot.com/
To my Sam,
I love you to the moon and back and back again... I miss you every second of every minute of every day. It hurts here on earth, but it's a pain I can handle to know you are free from the pain. I feel you with me so often, in the breeze (Ava was hugging you back in the breeze the other day) in the monarch butterfly that keeps fluttering around my car door, to the beautiful sunsets (Ava says God must be proud of you for getting so good at making them) and for your finger paintings in the sky... oh sweetheart, I love you...