Tuesday, June 2, 2009


Probably used that title before. Bah...should have come up with something better. BUT, that doesn't alter the subject at all, which is change.

No sooner did I queue that last blog for upload then things started changing all around me. Jennifer, usually a pillar of strength in this house, was beginning to unravel. If I didn't know better, I would say she was having an anxiety attack.

She's terrified about the trip. Mortified about not getting the news she wants. She is going down very dark roads in her mind, and she is not sure how she can make it through what is to come. I have not seen her like this since March 5th, the day we got the diagnosis on Bennett.

Do you want me to take you to the Urgent Care?


Okay, tell me what your worried about. We can solve it.

After some discussion, she told me that she felt we needed to have her parents with us. She felt that she needed them, just in case the overnight EEG was too much for us to handle, but also, and I think most of all, she was worried how she will be come Friday and Dr. Yoda delivers HIS EVALUATION.

I tried to assure her that no matter what, on Friday, that isn't THE END. If the Dr. tells us that Bennett is not a surgical candidate right now there is still more we can do to fight, but she is very anxious about that day and ultimately she needs more people there than just me. She needs her parents.

So who would then watch Carter? Because if stress is something you are trying to minimize, taking a near 5-year old to Detroit to stay in a hotel and/or hospital is NOT going to be stress reduction. It's going to be a stress additive.

Jen's sister volunteered to come here, with her two kids, and spend the rest of the week with Carter. Works out perfectly for Carter, because if he could choose one person other than Jen to be with it would be Mandy. Over even ME. That's how much he is into her, which is just fine. He is less into his Dad these days anyway, mainly because I have been less into him. That is something I really need to have changed, but that's another story.

PLUS, he gets the added bonus of hanging out with Jackson and Anthony, Mandy's kids, something he also LOVES to do, no matter what they are doing together...

So on Tuesday, it will now be Jen, Bennett, Debbie, Gary and myself all making the trip to Detroit. The more the merrier. And besides, if it makes it easier for Jen I'm all for that.

Me? I am still feeling fairly together. I've got god-awful stomach problems and haven't slept much, but even despite all the physical manifestations of trepidation the mental side of me is still very even. I think that this is because I know, now, after yesterday and seeing Jen like she was...I am not afforded the luxury this week of anything BUT remaining calm.

I don't have to be often, but I am convinced that from now until we get back to Columbus on Friday night, I am going to have to be the strong one, the role usually reserved for her and a role she actually prefers. She LIKES being the one in charge around here, and with that comes certain responsibilities of strength that she actually, deep down, enjoys.

And I learned a long time ago that everything (work, home life, etc.) goes more smoothly if I just accept my role as XO and leave it at that. Works for everybody. I am a lot of things, but I am not a good Commander. I am however, a GREAT second in command. I think it is because deep down I don't WANT the responsibility. But like any good XO, I have to ready to step up when I need to, and now...I need to.

My job this week is to be this.

I accept.


  1. Best to you all, Ken. Good luck with this trip.

    [That shot of Carter & Mandy's kids makes me think of "Stand by me", for some reason! :-)~ ]

  2. I totally get why Jen wants her parents there. It's comfort and safety. I'm glad you have found a way for it to work WITHOUT bringing Carter. I still remember Austin's first weeklong stay for surgical consideration. He had a 3 day VEEG, a PET, an MRI, an ictal and interictal SPECT and a BEAM. My twins were 3 months and I was still attempting to nurse them. Austin was seizing constantly. My mom and sister stayed with the twins at the hotel next door and brought them to visit and feed. It was literally chaos. Chaos for me, my babies and the hospital staff. I would only recommend bringing another child as a last resort.

    I LOVE that picture of the boys. I have a few pictures of my boys all peeing outside :)

  3. I first want to thank you for being a Dad and writing this blog, there are not many out there(Dad and blogs and I.S.) I hope to pass your blog to my husband, I am sure as a man/husband/father he feels very isolated in this.
    Our story is very different in that our cause of I.S. is mito disease. We got our diagnosis one month before our scheduled trip to Dr. C, which canceled it. The mito diagnosis no longer made him a candidate. You can read our story where I keep updates on our son...

    Your family is in my prayers as you make your way to Detroit.


  4. Something as BIG...as HUGE...as HEAVY...as catostrophic illness has a way of helping us see with clarity. Like needing our mom & dad. Our family. Our friends...the real ones...that can handle the guts of life with us. And I'm so happy that you guys could work it out. Support is so so necessary. I'll never regret calling J's parents (they were flying out to Tanzania THE NEXT day) the night before ACTH...and begging them to come be with us. We needed them. And that's a major factor with us deciding to stay in RI. Close to mine.

    Anyway...now that you know more about me than you ever wished to! *wink*

    Be safe...and super sticky - Captain Glue!



  5. That sounds like an excellent change of plans. I know what it would have meant to have my parents with us when we went. It was so draining...physically (with the 24 hr EEG) and emotionally...all the waiting, worrying, waiting, wondering. You get my drift. A support system will make it so much easier on both of you. Although, those people in Detroit have a way of making the scary not so scary.

    Good luck and have a safe trip!

  6. Ken,

    You have the right idea about being flexible and becoming the strong one. Elaine and I have switched that role many times and you really can't afford two to be in a bad mental state at a time. Last week, we actually took turns depending on the hour so I am sure your wife will be there for you if needed.

    As for the stomach issues, I have become somewhat of an expert. For me, diet routine and taking some time to take deep breaths in, hold, and breathe out several times a day. My diet includes two Rolaids, yogurt, orange, and some form of protein that doesn't make we want to puke every morning. It has made my stomach feel much better...of course good news can do wonders as well.

    Hope to meet you and Bennie soon!

    (Sophie's Dad)

  7. My husband has become a huge fan of your blog. He says...it's all the things people feel but never say.

    I couldn't have gotten through the first week without Jason. And now Debbie (Brandon's mom) is here helping out. It just makes things easier when you have family around.

  8. From the titles I thought this was going to be a funny post about Shrek 4. No suck luck.

    Ken you know I'm bipolar, and yet I'm the rock of the family, I don't want to be, but I found out a long time ago, that I have to be, because wherever something happens everyone around me crumbles, and I don't, I lead everyone through the crisis, and then I crumble, after all is said and done.

    So if a mental case like me can do it, so can you.

    Jen, must be especially vulnerable at the moment, and she probably can't even take care of herself, so you'll have to take care of her, but seeing you have your hands full already, taking your in-laws with you, seems like a perfect plan, especially because I know you're one of those rare families where you like your in-laws.

    Yes, getting the "wrong" diagnosis (whatever that might turn out to be) will be a crushing blow, but like you said it's not the end of the world.

    I'm seeing this more and more as a surgical case, and I'm almost sure Bennett will probably be a candidate, and I really wish he is.

    No one like surgery, but if a bald head, and a cool scar to tell the ladies (one day) will be all that stand between Bennett and a normal life, it's a small price to pay.

    Like the British say: "Keep a stiff upper lip", even if you have to fake it, sometimes appearances are good enough.

    Good luck on you trip, and may you come back from it with good news, and a smile full of hope.

    If Yoda can't help, well even master Yoda must have had a master to teach him, let's try and find Yoda's Yoda.

    I'm very flexible so now only am I crossing my fingers (all 8 of them), but I crossing my toes too.

  9. There is NOTHING like a Mom and Daddy...Mine have been through EVERYTHING you can IMAGINE with me and Colby....This was the best thing y'all could do for yourselves and Bennett...I am so thankful that they are able to be there to help...I recently lost my Daddy, and Mom, as healthy as she is, is in her 70's now, so she has a more difficult time handling Colby...So keep family close...It sounds like the whole bunch is a GREAT support system....And, hey...This is a great dress rehearsal for the upcoming "CURE"!!!

    Hang in there!


  10. I'm glad you made it work for all of you. Jen has been a rock for you and now you need to take care of her. It doesn't mean you can't have feelings but its her turn to let go and I'm glad you saw what you needed to do. I'll be hoping for great things in Bennett's PET scan. Make sure you are super perfect about the fast cause glucose related tests are very sensitive. If there is anything iffy about the PET scan results ask for a series of SPECTs before drawing conclusions.

  11. Goo lord James & I trade roles almost daily, sometimes hourly. We sometimes just instinctively know when the other is teetering on the edge of losing it, although this past month it's been me with the one foot off of the ledge most days. Be there for one another, but i also totally understand he wanting her parents there!! when you have 2 grief wrecked people it's helpful to have someone that isn't AS close to the situation there for moral support & a fresh perspective...that and moms and dads just rock. Good luck & I pray for BIG GOOD news!

    P.s.Our swing came from IKEA. It is the best $20 ever spent!!!...monica

  12. Sometimes we need to be able to switch roles and you are a good partner and father for being able to do so. We are sending you positive vibes. I'm glad you will both have the support of your family around you- at times like these it is so important.


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