Thursday, January 26, 2012


Loss works a painful hindsight on your actions. You become acutely aware of all the actions you could have taken, but did not. With the perfect clarity of your present knowledge, unencumbered by the demands of actually acting, you suddenly become aware of all of these contingencies that in the moment you never even thought of. I find myself going over things again and again, racking my mind for something, anything that I could have done differently.

There's a thousand thoughts about how he got sick. Did I expose him to something, when I held him in my lap with my phone in my pocket, did it give him cancer? Should I have let them do the catscan when he was 4 months old? James' tumor was a random one. Some ATRTs are the product of a mutation throughout all the cells of the body, an innate flaw that lurks patiently in DNA, until tripped by some random event or another. James wasn't that. The only sick cells in his body were the tumor cells. He was perfect in every way otherwise, just as God made him. So I keep asking myself what did it? What tripped that first cell into an ATRT cancer cell, especially one like James' ATRT? A furiously aggressive tumor, even by ATRT standards, it burned through his body and killed him in less than the time he was supposed to have to recover from his craniotomy. That one illusory success we enjoyed throughout our whole stay at the hospital. This is all foolish of course. He didn't get cancer from a catscan, a phone, or something in the water- if anything that catscan helped us because we wound up having a benchmark when James first got to the hospital, so the doctors knew better than to treat him for something else. You hear nightmare stories of parents in and out of the hospital for months without an ATRT diagnosis, their children suffering. We found out in just over a week after James got sick. Nothing caused James' tumor that I or anyone else did. It just was. Somehow knowing that just doesn't help.

Then there's the guilt about when he was sick. When he first got sick I didn't really take it seriously. He's a sick baby, babies get sick. He's throwing up, what's another summer bug. I just didn't worry about it. We went to the pediatricians and I patiently waited for them to confirm my suspicions, toss some zofran our way and send us on our way. I never pushed them to do more. I never thought- hey, could this be serious? Even when we went to Medical City Children's, I remained supremely unconcerned. Here's where the first real guilt creeps in. Shouldn't we have gone to Children's? They found his tumor there. We only saw a doctor right before we left at Medical city and they barely even examined James. They just gave him fluids and got hacked when we made them stop trying to give him an IV after they screwed it the first few attempts. They had an IV team at Children's that did it in one take. I should have been more aggressive, I tell myself. I should've gone somewhere else, found the diligent and sharp intern (never believe people who tell you not to go to teaching hospitals) who first noticed James' symptoms at Children's. I should have pushed for more treatment faster. I should have made them find it, instead of sending us home with James still sick. He deserved a better father than that. Still, I remember being by and large supremely unconcerned, if annoyed by the care we received. He's throwing up, I remember thinking to myself, we'll get fluids, medicine, and life will go on. It's not like he's dying. I probably even made some stupid jokes. I don't remember.

Even on the way to Children's, stopping by the house to pick up clothes and toys for a quick one night stay I remember my worst case scenario having evolved from the weekend to that Wednesday from stomach bug to stomach parasite, as WebMD warned me. WebMD did not suggest brain cancer. Still, I assumed a night of observation would translate into a quick solution and an easy out. Just need to pick out the right med. If anything, I thought I was overpacking, with at least half his toys and about a week's worth of clothes. I remember talking to someone (can't remember who- I remember very little about that day before the hospital) at work that day about James being sick and them asking if it was serious, and my lackadaisical response of no. How could it be serious? He was an eight month old. What happens to eight month olds? My mother asked me if I wanted her to come down and I said no, he's fine. And fool that I was, I believed it. I feel so guilty about that. He must have been in so much pain and here I am, his father, brushing it off as something not that serious, a bump in the road and a one off night at the hospital. I feel so guilty about that, about how "ok" I was until the differential started narrowing. I know we caught it "early" relative to a lot of people, that we were diligent with 4 pediatrician visits and 1 ER visit in a week before getting admitted. Still, I feel like I could have done more. Should have done more.

When he was sick, there's still more guilt. Not pushing the doctors hard enough to get another MRI after his post-op MRI, contenting myself with feeble catscans and still less useful medicines. I worry about how much pain he was in, how little medicine we gave him. My poor little boy. I feel guilty about each and every night I went home to sleep. I had barely three weeks left to spend with him, and I spent more than one night away from his side. I would give anything for just one night in the PICU again, with James stubbornly refusing to sleep, pawing at his leads and his IVs. I'd kill to try to spend another night on the worst of those PICU beds, the uneven vinyl pullout with less padding than my cheapest sleeping bag, barely long enough lay down on, more comfortable your leg hanging off it. I feel so guilty about that. About the Rangers game we went to, the meals out we had. Every moment I spent away from him. I feel guilty about the end. Did I give him the right medicine? Too much? I followed the directions but what if I screwed it up? What if I made it faster.

Above all, I feel guilty about the time I missed with him while he was still here. There are so many things I wish I'd done that I thought I'd have time to later. So many experiences lost. I really don't have words for that. I could lie to you, but why bother? I know better. I assumed I'd have years to learn to be a better parent, and I just didn't get there.

I've read enough on grief to know at this point that guilt is "natural" and part of the healing process, that I'm projecting and deflecting, attempting to avoid the reality that there is no one to blame, no one to be angry at, and no one to seek satisfaction from. As always, academic understanding is useless. I know I'm not going to die on a roller coaster, but my body often disagrees. The guilt I feel about James is a bit like that. I know it won't help anything, I know it can't. I know it won't help me, but there it is, whispering in my ear reminding me of all I could have done. So I just feel it. The silly thing is that nothing I could have done would have mattered. If they'd found James' tumor that weekend, he'd still be dead. If I'd spent every night with him, he'd still be dead. Nothing I or anyone could have done would have made a difference. But I was his father, his protector- I was supposed to be able to do things like that for him. Sometimes I feel like guilt helps me remember that, helps me connect to him in an odd way. It's a link of responsibility. I miss that.

Thank all of you for your continued thoughts and prayers.


  1. I was getting the oil changed today, something my husband always did. I can't drive over that huge hole filled with oil, so I went to a mechanic. While I was there, my cell phone rang, it was the funeral home. The woman said, "Your husband and his death certificates are ready for pick up. Will you be by today?" I can't believe this is happening to me, but it really is. It was all I could do to drive to that funeral home and go in and collect my new belongings.

    The guilt. It's horrible, but it's possible only in hindsight. We're told "they" don't know how long someone has to live, that we can't devote every minute to them, or it will take us down. I suspected that my husband's death was imminent the last week of his life. The hospice nurse assured me it was not. I spent his last two nights on earth away from him. Guilt? Oh, yes, much.

  2. I was told my Babygirl had protein in her urine a year before we found out about her kidney failure. Knowing that finding out sooner wouldn't have saved her kidneys doesn't matter. I still feel guilty.

    It's nonproductive. But it's real.


  3. I've read your blog but never posted before. My first husband passed away over 4 years ago from accidental cocaine overdose. We were separated at the time and i was living with my parents. I knew of his addiction but didn't realize how bad it was until we were married. After learning of his passing all the guilt set in, it was horrible. I would think about it all . day. long. The first thing i told my mom after the detective told me he passed was "why didn't I have an intervention?" I would think of all the things I could have changed during the time we were together. I would not have been the inhibitor of his addiction, i would have made him go to counseling, i would think back to see how we could have made our marriage work. Obviously none of this would have changed the outcome. He needed help but only he could have sought for that help. Our marriage was in so much termoil and i put everything i could into it before getting out to save my sanity. The guilt will pass, it really does. I remember thinking from the moment i woke up til the moment i went to bed about him and then i remember when i thought about it less and less. I still think about him but its in loving and good memories...i know this does not compare to loosing a child as i could not even imagine that but the process is the same. I went thru 2 years of counseling and it kept me sane and i highly recommend it if you have not yet. Sorry:(

  4. I can't express how deeply sorry I am for your loss. I hope that writing helps you heal. I've read the posts and it sounds like you did everything right. I know that doesn't really help, but I just wanted to confirm it. May you and your wife find a little peace soon.

  5. I am so sorry for all that you are going through. My heart breaks for you hearing you talk about your guilt. James was so lucky to have you and your wife for his mommy and daddy. He was/is so loved by you. Thank you for sharing your raw emotions. I know it cannot be easy. James is still always on my mind and in my prayers. Hugs and prayers for peace and comfort.

  6. I continue to pray for you and Kara (and your extended circle who love James so much). Your pain is palpable and so, so raw. I have no words of wisdom or grace.. Just a simple, I am SO sorry for your loss and I hope one day your good days will outweigh the bad.

  7. Whatsoever things are pure and lovely, think on these things. James is pure, James is lovely. Thank God for every day you had him with you and know that he is in your future. James IS in your future! There are no lessons or lesson plans to follow for being a good daddy or momma. You were the best parents James could have. When the devil brings the thoughts of not good enough to you, laugh in his face. You and kara are good enough. You will always be good enough. Guilt is a trip you don't want to take. I will continue to hold you up to the Father until you can hold your arms up again in praise.

  8. Thank you for sharing. It makes me appreciate even the rough times I have being a parent.

  9. I first stumbled upon your blog while creating my own new one borne of a heart-crushing break up. I was drawn in by both of your talents for elegant and articulate writing, the profundity of your situation, and very importantly--your profession (or at least what I believe to be a profession) of your Christian faith.

    Consumed by self-pity and sadness, I was struck by how my suffering paled greatly in comparison to what you did and do endure, and that moved me to continue reading. I worried that I was still reading out of some sick fascination with someone else's nightmare playing out in words.

    Then, this weekend I was on a retreat with a group at my church at which the speaker briefly cited Luke 10:38-42, calling us to be Mary's, not Martha's. Yes, we should ritually set aside our "To-Do" lists to sit at the feet of Jesus. BUT, the core theme of the speaker's message was what we do when we find ourselves in the valleys of our life, and he used this passage in Luke to urge us to sit at the feet of others whose suffering is beyond our comprehension so that we may learn how others' identities in the Lord are possibly kept in even the most devastating of times.

    All of this to say that I fully intend to continue "sitting at your feet" as you continue on your painful journey so that I may understand some inkling of what pain is and can be. I pray that your faith remains alive and well and that loved ones continue to flock to your side to support you when it seems hope has run out.


  10. I understand your guilt. I feel my own for my now 16 month old daughter who has fought neuroblastoma (malignant tumor in her adrenal gland) since she was 4 months old. She's now 16 months old. Her neuroblastoma was also the random cell mutation kind. So many times I've wondered "Did I eat something I shouldn't have while pregnant?" "did I expose myself to carcinogens while pregnant?" "what did I do to cause this because my innocent daughter sure hasn't done anything to deserve this." everyone tells me that I shouldn't feel responsible for this happening to our daughter. That it's not my fault. It's just something horrible that happened. But the truth is, I struggle with "random." I don't understand random. Random is horrible and out of my control. So, right or wrong, I understand your guilt. It's not deserved, but I can relate. Prayers for you and your family.

  11. Guilt is a terrible thing, but it is something we cannot help but feel as a parent. My daughter was diagnosed with Type 1 Diabetes last year. She was so ill. Her body didn't give us the usual call signs of diabetes. She was hospitalized under some very dire circumstances, a mere breath from a diabetic coma. However, hind sight is 20/20. I can see many incidents, going right back to pregnancy with her, that should have directed us sooner to her medical condition. I often wonder if there was something I could have done differently to prevent this disease for her. I know the answer -- doesn't mean I like it. As parents, we should be able to fix and protect our children. I often wish there really was a magic wand. It is a terribe thing to watch your child suffer. We are lucky to still have her. My heart breaks for you and your wife. Your anguish leaps off the screen. I simply cannot imagine your pain.

  12. Guilt is from Satan, not from God. Praying God will win out in your mind and you will realize that nothing that happened is a surprise to God.
    You were a normal, average parent given terrible circumstances.

  13. Oh, Sikes family. How my heart breaks for you. I just want you to know that I think of you often, and pray for you always.

    My mother recently bought our October 2010 son a stuffed giraffe, and I almost burst into tears thinking of James. How silly, to be so caught up in some Internet blog, reading up on the lives of strangers, most people would say I need to get a life, right?

    I wish so much that things could be different. So very much.

  14. Matthew and Kara ~

    You are deeply loved and prayed for often. I wish I had words to take away your pain. I hope it gives you peace to know that one day the Lord will redeem this heartache. I don't know how, but I know He will. In the meantime, may you find His grace sufficient every day. You are not alone. I will NOT grow weary praying for you and your families.

  15. I found your blog today... after returning to blogging after a two year absence. I left my blog because I lost my best friend to Leukemia and blogging just felt like another thing I would feel guilty about and there were already so very many.

    I am so sorry for your loss.

  16. I can only say that though my son was older and the disease different, I too am wracked with guilt, and trip over 'what if' at every turn. The road of grief-torn parents is well worn, and far too crowded, though so crowded, that we must in fact lean on each other. Lean, and accept the weight as well of being leaned upon. It seems to be the only way.