Email: (from Nana to friends & family)

Hi all,

Sorry about this big group email, but a couple days ago [Papa] was doing fine then in the evening started having garbled speech.  Kari and I took him to the E.R. and after some tests discovered he has a brain tumor.  He is feeling good and in very good spirits; we just have a very hard time communicating!  He is to have surgery to remove the tumor next week.  There are a lot of unknowns right now, but we are hopeful for a good outcome.  He will likely come home from the hospital tomorrow, then we will go back for the surgery.  So far he is not getting too frustrated and has a good sense of humor.  I am doing well; trusting the Lord for His good will.  I have been staying at the hospital and will go back after getting cleaned up a bit.

Thank you for your concern and prayers!  I will keep you posted.  Needless to say, we will not be going to CA and places in between at the end of the month.

Love,  Papa and Nana

My Reflections:

We celebrate the birthday of our little cousin.  It feels strange doing something so “normal” when life seems anything but, considering the present circumstances.  It’s almost easier being at the hospital because then I can at least feel reassured that Papa is doing ok in the moment.  It’s not being there when the enormity of what’s happening sets in.  But it’s good to celebrate with J’s family and I know the boys are happy to be in on the fun.

C Bear all decked out in the “Bob the Builder” theme, and ready to dig into that cake. The cartoon’s theme chant “Can we fix it? Yes we can!” seems a bit presumptuous in the larger scheme of life today.

While at the party, Papa’s brother, calls.  He wants to get the latest update, but even more than that, he has a generous offer for us.  He won an iPad in a recent raffle and already has one of his own.  Could he send us this extra iPad to possibly help Papa in his communication?  There are apps we can get that could be useful as well as the opportunity to FaceTime with family far away.

“Um wow.. Yes!, that would be great!,” or the like is my response, and Papa’s brother arranges for it to be shipped to me ASAP so Papa can start using it right away.  I’m so touched by his willingness to do this; just one of the many, many, kind & generous gestures to be shown to us in the days ahead.

When we return home from the party, there’s the usual chaos of life with three boys.  In the midst of changing Little M’s diaper, I discover he’s had a major blow-out, much more than any wet-wipe can handle.  As I take his squirmy, poopy mess to the tub and then begin to bathe him, the emotions start to swell in my chest.  I get Little M cleaned up, and by the time he’s back to the changing table for a change of clothes and fresh diaper, continuing to wiggle and squirm all the while, I feel completely in over my head.  The waves of my emotions are starting to take over.

“J, can you please HELP me up here!,” I yell in desperation from the 2nd floor nursery. J comes and with no further explanation, I just look at him and say, voice breaking, “I can’t do this anymore!”

And leaving J with the baby, I rush out and into our room, to my closet, shut the door, and fall to the floor in a heap, right there under my skirts and my dresses.  And that’s when it all comes crashing in on me; all that’s transpired these last few days.  And I let out big, choking sobs, curled in a ball, right there in the safety and sanctuary of my closet, right there on the floor across from my shoes.  And I sob, and I cry, and let the tears finally come in full force.

And a little while later J comes and sits next to me on the floor.  And he talks to me and tells me it’s ok; that it’s a lot to take in and that it’s all happened so fast and that it’s good to let myself finally cry.  And I’m thankful for his support.  And I’m scared and I’m sad and I don’t know what else yet.  And eventually I get up off that floor in my closet, I wipe away my tears, take a deep breath, and somehow get it together to just keep moving forward through the day.

When evening comes, I make my way back to the hospital to visit with Nana & Papa.  And, thankfully, Nana & I make some important discoveries about Papa’s ability to communicate.  He’s able to tell us (in his own gibberish) that not only is his speech mixed-up, but what he’s hearing other people say is mixed-up too.  For instance, when the nurse asks him a certain question, he hears an entirely different question.  Her words don’t sound mixed up to him, but just come across as different words than what she’s actually saying.  We’ve just been assuming Papa can clearly understand what we’re saying, but this new insight definitely helps us understand why he’s seemed so out-of-it at times in his responses.  Now we know he just needs further clarification when we or the nurses speak to him.

An even bigger break-through comes, though, when he wants to use his laptop.  I stand there looking over his shoulder, thinking there’s no way he’ll be able to correctly type in the password to get into his computer.  And then I watch, dumb-founded, as he speaks aloud each character in his nonsensical way, yet actually types the letters correctly (for example, saying fu, da, swa, shoo, fee, while actually typing k-i-t-e-3).  Nana & I begin to write out questions to Papa, and are amazed when he completely understands what we have written.  His speech and our speech are mixed-up, but his comprehension of the written word is still good!  What a relief to know there’s a way he can clearly understand us!

There’s still a long way to go, but we’re slowly adapting and learning how to better understand Papa and vice vs.  I’ll take that.  I’ll take whatever ray of hope we can get right now.

Email: (response from me to Papa’s brother)

Thank you so very much!  I know he’ll have fun with it [the iPad] and I’ll do my best to help him with it too.

Want to share a bit of details about my visit with my dad tonight; feel free to share some/all of this with the rest of the siblings if you think they’d be interested.  I know it’s hard to get an idea for how things are going with my dad when you’re so far away, so here’s a little “window” into his world at the moment…….

Was very encouraged in visiting with my dad tonight, especially considering my conversation earlier with you concerning the iPad.  Each time I’m with my dad, I learn more about communicating with him.  As I told you over the phone, the biggest roadblock in his communicating is his mixed-up speech.  For the most part, he speaks fluently, but as if in a different language.  Most words you can’t understand because the words are all mixed up or he gets some letter sounds right, but then adds on other letter sounds to words (saying “chumer” instead of “church,” etc.).  Then he’ll throw in a word or phrase here or there that’s perfectly clear and understandable (like tonight when he spoke in a whole string of nonsense words trying to explain to us what he was talking about, and then he just paused and sighed and said, clear as day, “I wish I could talk.”).  We’ve tried having him write words, and that is a struggle too as he can write letters clearly, but gets them all mixed up, or gets stuck in trying to figure out how to spell something.  Tonight he was verbally spelling out words for us and, again, he was just spelling nonsense words.  It was interesting though, because when he spelled them verbally, he would also trace the letters in the air, but the letters he would speak would be different than the ones he would trace in the air.  If we could pay attention to the traced letters, often they would make more sense than the letters he spoke (for example, he’d say “N-U-U-Z-T,” but as he spoke, he’d trace B-I-L-L-S… then we’d say, “oh, bills?”  and he’d say, “yes, that’s what I says.”).

Also, there are times my dad seems a bit “out of it” and unable to comprehend questions…. not “quite all there,” if you know what I’m saying.  Usually this is with the nurses or doctors.  For instance, a nurse would ask, “Can you tell me your birthday?”  and he’d just look at her funny, or shrug, or list numbers from an old home address, etc.  Well tonight, my dad was able to explain to my mom & I that he would hear people say different things than they were actually saying.  He commented how weird it was because it wasn’t like he was hearing the nurse speak in “jibberish” (as he put it), but that his brain was actually hearing her say different words than she was actually speaking.  At some point today somebody got the bright idea to write down their question and then my dad was able to read it and comprehend it no problem “Oh, you mean (such and such)……!”  He read it, and the lightbulb went on for him and the very question he hadn’t understood when someone spoke it, he understood and answered (in his language, but enough for us to know he knew what we were talking about) after he read it.  Thus we discovered that all we needed to do was write things down when he wasn’t getting what we were asking or saying.  It was encouraging to know he was more “with it” than he was letting on at times.  There definitely is a disconnect in his brain with forming words verbally and receiving them orally, but this doesn’t mean the capacity for him to understand and respond aren’t there…. we just have to be a little more creative in the way we go about it at times.  The more we communicate with him, the more we’re able to find ways to understand each other.  Sometimes it takes us a few minutes just to figure out a single word he’s saying, but usually we’re able to figure it out with a bit of patience and work on both sides.  Never before have I so intently listened to someone during conversations… definitely makes you focus as you try to understand, but it’s quite rewarding when you’re successfully able to communicate.  How does one fill the time during a hospital visit?  Well, we just sit around and try to figure out what everyone is talking about!  My dad is very appreciative for our patience in conversing with him and commented how most of the nurses and doctors who come in really don’t care what he’s trying to say and only pretend to try to understand him (and yes, I have to admit at times my mom & I just nod and smile and act like we know what he’s saying when we don’t.  We try our best though!)

Another thing we discovered tonight – he’s still computer-literate!  My mom had brought his computer to the hospital, but was hesitant to pull it out thinking it might really frustrate him in trying to use it.  When we finally did get it out to look up something on it, he was persistent in typing in his password.  Even though the letters he was saying weren’t correct as he typed each key, the actual letters he was hitting were the correct ones – again a sign that he knew what he was doing, his brain was just mixing up the letters as he spoke them.  It took a bit of time to type, but he got it and was able to pull up what he wanted and shut down the computer by himself.  We didn’t use it very long, but enough to impress me that he still has the skills and the savvy and the recollection in using it.

ALL that to say, I’m excited with the prospects the iPad has in being a help with communication!

My dad, mom, and I also discussed some of the “hard” stuff that I’d rather avoid at a time like this, but that’s important to confront, all the same.  I asked him if he was comfortable with the decision to go ahead with the surgery and he expressed that he thought this was the best option;  that maybe it wouldn’t help, and maybe it would make things worse, but that it could make things better and that would be good.  He also told me a lot of what the neurosurgeon had discussed with my mom and him yesterday so that helped confirm that he has a good understanding of what’s going on and what’s to be done.  We also talked about some of the hard “what ifs?”and, fortunately, my dad has done lots of advanced planning and has household/medical/financial “stuff”in order to help my mom out if this surgery should leave him in a worsened state (praying that doesn’t happen!).

Anyway, that’s the very long (and wordy!) update, but I wanted to help give you an idea of what’s going on at the moment.  I’m not sure if you & the other siblings have Skype and could communicate via video with my dad that way, but he expressed an interest in this and I think this would be a good way to communicate with him as it really helps to see my dad as he talks (his body language adds a lot in helping to understand him).  I know Skype has the ability to type text as well and that might help for him to read some questions if he doesn’t understand some of what’s being said (my mom or myself could be there to help interpret too!).  Let me know if this is a possibility and we can set up a time to make it happen.

That’s all for now.  Will keep you posted with further updates.  Appreciate your concern and help : )

Love,

Kari

Email: (from me to a friend)

Thanks, [friend].  I did feel encouraged after the neurosurgeon was in today.  Surgery is scheduled for next week &, if nothing else, it helps to know things are moving along and this will lead to getting more concrete answers.  He seemed a bit optimistic about removing the tumor, although I know there are a lot of risks involved.  Find myself expecting the worst, but who knows what God will do?  One step at a time, right?  Have to keep reminding myself to trust God… feel like my brain is on overload with everything it’s trying to process.  Ugh.  I’m so, so sorry for all you had to go through with your dad.  Know you dealt with this type of stuff and so much more.

Appreciate your offer to help.  Until surgery, it won’t look like there will be anymore juggling of hospital visits, so that will help out a lot.  At this point, they’re saying my dad will be discharged probably tomorrow and be able to stay home till surgery.  Not sure how that will work out, but I’m sure that would be better for him than waiting it out in the hospital for surgery(?).  Then after surgery, he’ll most likely be in the hospital for 5 days of recovery, so we’ll see how that goes and I will keep you posted.

-Kari

My Reflections:

I visit Papa at the hospital today.  He has visitors from his & Nana’s church.  In talking with all of us, Papa is surprisingly very jovial and animated (even more so than Papa would normally be). He seems overly talkative and doesn’t seem to mind that we still can’t fully understand what he’s saying.  We do our best to communicate though, watching his exaggerated hand gestures and attempting to figure out the context of the conversation.  While there, a pastor from their church asks if he can read some scripture and wants to know if Papa has a favorite passage from the Bible he’d like to hear.  Papa’s able to communicate the verse and the pastor reads it… something about going out into the wilderness or such, a bit despondent in its tone and not at all what any of us present would consider the usual “favorite verse” fare.  But the pastor obliges and then we joke with Papa about why he picked it.

After Papa’s visitors leave, I stay and chat a while longer.  I use the term “chat” loosely as conversing with Papa at present is anything but what you’d expect a light, casual “chat” to be like.

At one point in our conversation, Papa tries to write out questions and responses to Nana and me.  We soon realize though, that Papa’s handwriting is just as mixed up as his speech.  He knows what he wants to write, it just won’t come out right.  He writes some words, and then crosses them out as he tries so hard to get his brain to formulate the words he’s trying to communicate.  Nana saves the paper with some of what he writes today.

He writes:

LARRY IS INAI  INAN  INTO AN A TN  TUSA TUMON TUSA T TUMONS BAM BAIND I.

Nana & I look at him and look at his writing and then look at each other as if to say “What the heck is that supposed to mean?”  And then we attempt to do what that nurse has told us to do: work at understanding this gibberish.

He writes some more:

ASK EUSAMIN THUSAMUM

And we try to figure out whoever “EAUSAMIN THUSAMUM” is by asking question upon question and suggesting anyone we can possibly think of.

And then we take a good 10-15 minutes of back-and-forth over QUALISE and SEISENP; and then AUUA, COSTS, COSTO, KIBL, CUSMTL, and SAMS; just to figure out that Papa’s asking about what brand of hearing aide I have.  When I tell him it’s Widex, Papa responds,

“Yeahhh, that’s what I say…., SEISENP!”

He’s trying to let me know about hearing aides being available at Sams Club and wondering if they’d be just as good as what I have.  It’s his attempt at small talk, but, unfortunately, just “small talk” takes an excruciating amount of concentration, focus, and patience on Nana’s and my part.  It’s like trying to solve a big coded mystery, except the “big” mystery involves such things as hearing aide brands and wholesale shopping marts.

My brain hurts when I return home from the hospital.  This communication business is exhausting!