Thursday, August 6, 2009

And Just Like That...The Date is Set

Got a call today from the surgeon's office. We have a meeting scheduled for the 18th of August to get together and go over the surgery plan with the doctor. The following week, Bennett has some pre-op testing on the 26th, so we might end up going up the evening of the 25th. Surgery will begin on Thursday, August 27th. Our entire visit will probably last around a week to two weeks, probably somewhere in between.

I'm guessing maybe we'd be getting out of the hospital around the 5th, maybe the 7th, not entirely sure. There isn't any way to know that exactly.

Now it is just a matter of getting some stuff ready, trying to manage all of our life stuff and plan to go in and have this thing done.

I'm having a VERY hard time finding anything meaningful to say, it's the oddest thing. As great as it is to have a surgery scheduled, someone in a few weeks is going to be sawing my son's skull apart and removing it. That's hard to wrap my own head around. Also, work is...well, a lot is happening, a in the world do I manage it while all this is going on? Or Jen with hers? She's wiped ALL her vacation time, no more paid days off, all FMLA only. We are both stretched about as thin emotionally as two people can be.

Don't get me wrong, I'm relieved that we are doing this even though it doesn't mean he is guaranteed a cure and of course there is a mortality risk and a stroke risk and all kinds of other risks, and I am horrified over what they might find in there now that they think he has a tumor.

Bennett's seizures are the strongest they have ever been and there doesn't seem to be an end in sight with medicine. It's just frankly the greatest burden I have ever known, I'm a fucking mess of a human being right now and am about as close to the edge of the abyss as it gets. All I can do is keep duct taping up my mind every morning and hoping it stays held together.

That's all I got today. Thanks for the comments, sorry I have not had time to really reply to anybody for a while. Just too busy.

Gotta see the doc though, and soon. My mind is in a very weird place, and I am used to weird places, so this place is EXCEPTIONALLY weird.


  1. Hang in there man. Finally, something is happening. This is great!

  2. Even though I wish I didn't...

    ...I know what you mean.


  3. Wrote an entire post and lost it ...the jist of it was ...

    I know this place that you are dwelling in feels beyond overwhelming and I have yet to come up with the cure all for this gut wrenching anxiety.Believe me I would have bottled it by now if I had.Instead I find that the only way to navigate through this time of inexplicable fear and uncertainty is to try,try being the operative word,try to be present in the present.Mainly the safety and security of your precious family,moment to moment.Easier said then done I know.As I read your sentence about the abyss you are teetering on the edge of,I was reminded of this quote.Not certainly for everyone but for me,one of my favorites.
    “It is only by going down into the abyss that we recover the treasures of life.
    Where you stumble, there lies your treasure. The very cave you are afraid to enter
    turns out to be the source of what you were looking for” ~ Joseph Campbell
    Seemingly too simplified for this far to complex thing facing you all and certainly not meaning that you "wanted"any of this for Bennett,however I have also found that through the inexplicable also comes clarity and with it gifts.Not,again everyone's cup of tea but one I though I would throw out there.Peace and strength to you all as you venture forward ... especially sending prayers for sweet Bennett who I have no doubt will lead you through the abyss and on to the light.

  4. look after yourself Ken. At least you won't be waiting a massively long time to get this all rolling.

  5. I remember it well. After a month of pushing for a surgery date, I got off the phone with the nurse. We had just agreed to April 30th - four weeks away. I hung up the phone and almost threw up with the emotions of it all. The next week is a complete blur. I went through the motions. I got to work. I got home. I'm not sure how much I did because I couldn't think straight and my insides were reeling. I learned a lot through the process. Some stuff I would not repeat here. I learned that things can go right. Even though we have had seizures since the surgery its not like it was. To go from up to 100 a day to 6 in three months. Its very different. I hope you go to zero.

    Let me tell you something that is hard to believe. After everything that happens you will look at Bennett and think "this recovery will be so long" and then you will be shocked at the exponential rate of recovery. We were home in four days. Its hard to imagine but we were ready to move on in four days. And the healing happened better at home. That said, poor Emma felt like she was living in a bubble because there were things she could do that I was just plain afraid to let her do. So I hope Bennetts recovery is as fast. Its hard to imagine beforehand but then it just happens.

    I also took FMLA. It was a bit of a financial hit but it was well worth it. I was able to step away from work for a month with no emotional committments and focus on my family. No regrets there. It made a huge difference.

    In the week after setting the date, I ready to move to a mental hospital. But things got a little better every day. To say I wasn't a wreck would be a lie. I was able to keep it together and muddle through but the call center employees from the various utilities got the brunt of my angry sarcastic wit. Someday I might just send a few dozen donuts to the AT&T wireless support center to atone for how much of an asshole I was on the phone to one of their employees. I just wasn't myself. So Ken, where you are right now, its completely understandable. Yes, go see the doctor. Its the strong not the weak who go to the doctor and ask for help. And you, my friend, are a strong strong man.

    I am glad you set a date because horrible as the next step is, Bennett needs this chance to set him free of all of this suffering. And to let him be the intelligent boy he really is behind this mess.

  6. The short wait is a good thing! It's a great thing! All the time in the world won't prepare you for the realities of the surgery's mechanics so there is no point obsessing about it (though I know that is fairly impossible). No matter what the surgeon is going to do, you are going to go through with it anyway, right?

    Looking back, I wish that I had prepared less for my daughter's actual heart surgery- the endless internet searches, reading message boards, looking at photos of the procedure- since I had no part in the surgery other then handing her over. I wish instead I'd focused more on preparing to care for her as she recovered, both at the hospital and once we were home. Who wants to run out at 10 pm to buy gauze and adaptic? I should have had frozen meals ready, easy on/off clothes for her, a notebook in the hospital to write down exactly what the nurses told me to do with the dressings, etc. That is the stuff that actually needed my mental energy to prepare us, not the ruminating on the horror of what was going to be physically done to her or the what-ifs of complications. All stuff we have no control over.

    We had a nurse to stay with us for the first few days at home, which don't get me wrong, was comforting, but most of all I wish we'd involved our friends and family more in helping us cope beforehand with the fear and unbearable stress. I'm really happy you are keeping up this blog, even when you are angry, tired, hopeless, etc.

    You are doing the right thing! There is nothing more you can do, but make sure your kids know you love them, which I'm sure you are doing anyway. :)

  7. People above have certainly given you better advice than I can. I will say that Amphora is so right on with the notion of preparing for the after-care rather than just the ins and outs of the actual surgery.

    And Sinead is right about seeking out help. And don't just seek medical care for yourself. Begin to lay a framework to ask for help from the friends and family who are local. Have them reduce some of your load, both before and after the surgery. There are websites out there that let you set up meal calendars where people can bring food. It sounds silly, but that helps the budget and frees up time for you and Jen. People want to help and often don't know how. If you could use the help, let them know.

    But take care of yourself and Jen too. This is obviously an enormous stress, but it has a fairly short fuse. You would not have thought you could survive watching Bennett have seizures for 6 months, but you have. This is the (admittedly frightening) part where you get to finally do something about it.

  8. Ken, I am amazed at the wise words of these parents who have been through this....It seems they really know what to say....

    I am so thankful that this is moving so quickly...Less time to dwell on it...I can only imagine the worry...

    Please know that I am thinking of you guys and will continue to do so throughout these next few weeks....

    You're in my prayers...


  9. Ken,

    I can't imagine what you are going through...not even going to try. I hope that whatever needs to happen in order for you to get through this will happen. I hope your wife is doing ok too...I can't imagine how she deals with all this without any connection to other IS parents. (Not that anything really makes it easier, but just less isolating maybe?) I'm thinking about you both. Bennett is a fighter and although he has a hell of a fight ahead of him, I can't wait to see him on the other side : )
    Take care,

  10. Waiting is a bitch! And you don't really have that anymore, because soon you'll hardly have time to prepare everything.

    But you now have that moment of supposed calm, before the storm, when you know 100% for sure that it's going to hit and that there is nothing you can do.

    I don't think you, pr Jen think this, but it should be said anyway. The IS is not your fault, there was nothing you could have done, or not done not to cause it, it's just one of those quirks of nature. And now with the tumor, again, nothing you could have done, or not done differently for Bennett not to have it.

    Sometimes we know, but we still understand it better when someone else says it: IT'S NOT YOUR FAULT.

    Could you have been better parent so far to help Bennett? I Sincerely believe you couldn't. You did everything, you went everywhere.

    Like I said on another comment (and at the same time wish I didn't), it is opening up a very small child's skull, and cutting a piece out. But that is totally beyond your control, and you seem to have put it in the hands of a competent, and interested group of doctors.

    Like Suzanne said, take care of yourself, and take care of Jen, I'm sure you'll find someone to take excellent care of Carter while you're away. And come what may, Bennett is taken care of already.

    Now you need to deal with the logistics of it all, from your, to time off for Jen, and finding a place to stay, etc.

    Don't worry with what you can't control, and solve what you can.

    I'm sure there are other IS parents out there as good as you guys are, but I doubt that are any better.

    Now pick myself up, dust myself off, and start all over again. Hopefully for the last time.

    Take those meds, hit everyone that owes you money, ask family, that's what their there for. Do whatever you have to do.

    You're near the first finish line: Surgery. Recovery after Surgery will be the preferred direct finish line, but you can't reach one without going through the other.

    The carrot signs, are ending and the carrot is closest than it ever was.

  11. Sorry for the long comment.

    I just don't want to see your defeated (by anticipation), now that everything is so near a kind of ending.

  12. Hang in there, Ken. I'll be thinking of you and your family and, as usual, keeping an eye on the blog daily. Wish the best for everyone.

  13. Trust me...the sooner the better. For both you and Bennett. It feels so incredibly overwhelming at the moment because there is so many mixed emotions and it doesn't get any easier as the days go on so the less days between now and then...the better. Sinead is right...recovery is so much quicker than you can imagine. I remember the first few days following surgery...I was a wreck. It was the worst I felt through this entire process. It was so hard seeing Sophie the way she was. I felt so guilty. But then one day it happened...everything turned around. Ever since then, it has been AMAZING.

  14. Ken- as frightening as this all is, look to Sophie's surgery for hope. The interim won't be easy, but the outcome holds so much potential for your little guy.

    I'll be thinking of you all.

  15. What can I say?? I'm not in this situation with one of my kids, but I certainly feel for and care for Bennett. I'm praying that the time goes by relatively fast for you so that the waiting gets over quick. Praying that you and Jen are able to juggle all the little details and can deal with the mental things also. And most of all, I'll be praying that this surgery is a success.

    If you are looking into a place to stay while in Cleveland, look into the local Ronald McDonald House. Not sure if they charge or not, but if so, it certainly won't be as much as a hotel.

  16. My daughter is having surgery on September 18th with Chugani's group. I know this place of which you speak. The anxiety is already overwhelming. I keep watching her with a mixture of sadness for what she is going to go through, fear over my own feelings while she goes through it, and yet excitement at what can be afterwards. I will be following you guys closely and cheering all the way.

  17. I dare to imagine all the different emotions this is bringing to you. Surgery is what we all want to be an option for our kids. We tend to think about the end result rather than the actual process. I never got far enough into it to actually have to prepare myself for the process. So, while I know it's what you hoped would be an option, the excitement phase of learning Bennett is a candidate...well, probably more terrifying than exciting. Because then you are forced to think about the reality of it.

    I think getting it over with sooner rather than later will save you much worry and anticipation.

    I'll be thinking of you and Bennett and Jen. Praying for peace and comfort to all of you!

  18. Rob:
    I'll do the best I can do.

    I hear ya. I just hope that you can get the stuff presented up there in the Motor City quickly and get some action going. Maybe is better than no.

    I get where you're coming from. And since Joseph Campbell heavily influenced George Lucas who changed my life with Star Wars, I'll happily take that as a good omen.

    Good point, there is something to be said about having this all happen this fast. Cause up till now it was SLOW.

    Thanks for sharing those experiences. And for everything else you've been sending to me. It is helping me a lot to feel more prepared. I'm still about ready to throw up myself and am on the ragged edge, but things like this, things you all do, help keep me grounded and from going over.

    Jen will take the FMLA. I will still work while the surgery is ongoing. I can manage what I do somewhat from a remote location, and I have good people, no, amazing people, watching my back for emergencies. They will help me through it. My 'boss' already said he's got my back, and he always has. And some other friends have offered to help if I need it, which is cool.

    I am gonna go see the doc next week and get some of the meds situation worked out.

    We'll definitely need to plan ahead and get more family involved in the recovery process. I'm trying to figure all that out as we go. This next week upcoming a lot of stuff will start to take shape. But I do need to take more time out for my OTHER son...I am really ignoring him of late and it just kills me.

    Tell me more about this meal calendar thing, that could be hugely helpful in prepping for the post-op period after we get home. And budget help we'll need since Jen will be paycheck-less for a month.

    The Jen and I think is pretty key, we are both stretched thin and not really having the greatest working relationship at the moment. Some stuff went down a bit ago that caused some stress that we need to try to get past.

    Thanks for the thoughts and prayers.

    She gets by somehow, she is WAY more internal than me. She reads blogs from time to time, but she just keeps things to herself a lot. It's her way.

    Not at all sure where you were going with that novel, but I've never blamed myself or Jen for Bennett's condition. But as for the rest, thanks for the advice, I take it all to heart.

    Thanks dude.

    You sure had it together when I met you after Sophie's surgery. But I do remember how tense your blogs where those first few days before we got there. If I have a third of your strength I should do OK. :)

    I do...she inspires me. That video from today was PRICELESS!!!

    The Ronald McDonald House is exactly where we will end up. 20 a night. Not too bad.

    And I will be cheering for you. Wow, the 18th, I wish you all nothing but the most amazing and awesome outcome.

    Don't get me wrong, I'm grateful, extremely grateful, to be at this point in his treatment to where surgery is an option. Lucky? Yeah, I guess that makes us lucky. I'm just terrified beyond anything I've ever felt. It's near paralytic some moments. I'll adjust, but wow, what an emotional week. I wish you and Austin were at this point, I really do. I can only hope that someday you are.

    Oh and from another comment you left. I don't know for SURE about the Comments thing...I just read it in a few things when I was trying to learn some etiquette on Blogging, but sometimes it is just so many it's hard to keep up. I think the proper thing is probably just do what WORKS for you, ya know?

  19. I'm glad you never thought that Bennett's condition was your fault. I also hope that Jen feels the same too. As a norm women blame themselves more for problems that (could have) originated in the womb. They keep running their 9 months of pregnancy and thinking what they could have done different, even the ones that know enough to know it's not their fault. Lady's who might read this, is this not correct (or do I just know very overly sensitive women?

    I just hope that Jen doesn't secretly blame herself, or think that there could be something she could have done better, or different.

    But in the best of conditions having a child is still part lottery. You know you'll win, you just don't know which (male or female), and you can only hope that they'll be healthy.

  20. I'm so hoping you didn't take my comment the wrong way! I only meant that we all fantasize about it. The thought of our kids being candidates..maybe just maybe.. is exciting. Because they may have a chance after all. But, I know in my case, I didn't stop to really think about the reality...the actual surgery part. It's a path I don't want to wonder down til I have to, ya know? So...I just tried to put myself in your position. On the surface it's happy and exciting news...the part where it's your child having the brain surgery...gotta be on a level I won't understand til my time comes...and ironically, I wish it would come soon.

    I know that you are grateful to have this be an option for Bennett. It's really his best chance. But still scary nonetheless.

  21. The two sites I am familiar with are

    I know lots of families who have asked friends and family to sign up to provide meals using these sites and you'd be surprised how many unexpected people will sign up. It is an easy way to be able to help. And some folks even specify local restaurants they like takeout from and the menu items they like. But many people like to bring a home cooked meal.

    Also, I have some Vig we don't need that I will send you. I know you are weaning too, but maybe this will keep you from having to make another order.

  22. Back in town now. Can't believe you have a date set...and so soon.
    I guess the only way through this is one baby step at a time. You and Jen and Carter and Bennett are in our prayers every evening.


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