Oh, The Stories I Could Tell…

If either of us were currently working outside of the home, Honey’s surgery would have been scheduled for a most convenient time. He got released from the hospital right at the beginning of Thanksgiving break – so theoretically everything should have been pretty easy going.

Theoretically.

I hate theoretically – cuz it is almost never in line with actually.

Let me tell ya about what Thanksgiving vacation looked like in our house this year.

I’m gonna tell you now that I will likely win any and all comical bad vacation stories with this one. (For those of you who have heard them – this even beats the “mooooove”  to TX when I was 22 and The Waffle House story – both!)

So – Friday, November 16th, Honey gets sprung from MDA, the kids get sprung from school – I get sprung from any kind of sanity I have ever held.  This was my schedule of events for the first official day of Thanksgiving break.

  1. awake at 3:30AM when Honey decided he was ready for breakfast
  2. go to cafe 24/7 to find something he can eat in the middle of the damn night
  3. wake again at 6:30 when it was actually time to call for breakfast
  4. eat breakfast (cream of wheat, blueberry greek yogurt, fresh berries and a Dr Pepper)
  5. leave MDA at 7:30am – return to The Woods for a second grade Poetry Feast for The Boy Child
  6. drop dog at groomer so that Honey is not offended by his dog-like stench when he gets home
  7. attend Poetry Feast, dismiss boy child from school early b/c that’s why they have things like Poetry Feasts on the day before vacation; so you can get your kid out of there by lunch time and the teacher can get cut some slack for once
  8. return to MDA to bring Honey home
  9. wait
  10. wait
  11. wait
  12. leave MDA just as evening rush hour is beginning – spend nearly three hours trying to get home
  13. arrive home with just enough time to get back in the car and go to pick up 10 and 6 from their mom’s house (thank you, MY mom for doing that for me – you can’t begin to imagine how much that hour off helped)
  14. realize that I have done all I can — yet rest assured that I have forgotten to do more than I remembered
  15. See – knew I forgot something – pick up all Honey’s new prescriptions and try to deal with pharmacological misfortunes.
  16. Shit – the dog! Forgot the dog. Good thing the groomer likes him (I think she just tolerates me at this point…)
  17. try to sleep, fail, try again, fail, repeat ad infinitum
  18. wake at 3:30AM when Honey decided that he was hungry…..

So really, it wasn’t a BAD day at all – just an extremely long and busy one. Vacay really started getting exciting after that.

Just wait….

Imagine for a moment – a smallish townhome with an open kitchen/dining/living area filled with big man-sized furniture, three children (6,7 and 10), two moms (one just a mom, the other a nana), one rather large man who is learning how to do many of the things that he used to could do with no thought at all (ie: shoe tying, walking, dressing, typing, etc –> all very frustrating tasks), his walker, three cats and a very needy schnauzer.

No, really, imagine this for  a moment or two – then promise yourself you will never try to think of such a thing again.

I really don’t think I can even begin to do this tale the justice it deserves -but I will try. Understand that I have to downplay some of these events because if I emotionally revisit, I may have to take a valium (or seven).

As best I recall, it went something like this:

The first weekend was rather quiet. Honey spent a lot of time sleeping, Nana was there any time I needed to escape run an errand. The kids were playing online games together with the two computers, Kitty brought us a collection of dead moles to show his gratitude for our return home. Really it seemed like we were going to be okay.

By Monday, I started to have my doubts.

All I could see was the wall in front of me that I needed to climb over to even begin to see my first hurdle in moving forward. I knew I needed to make the house handicapped accessible for Honey – I just hadn’t the foggiest idea of how to get started. I knew I had to keep on top of his medicines – but the lists were way overwhelming. I also had to learn how to monitor his glucose levels as he had developed steroid induced diabetes while in the hospital. I had finally almost figured out how to do the brain cancer thing, and now they were throwing diabetes at me. Not okay. So. Not. Okay. At. All.

I also knew that I had to take care of business outside of the home. My letter of insurance coverage had just arrived so I could get myself basic insurance through my work – and then we received a denial of coverage for 6 and 10 through state insurance (CHIPS) because we make too much money. Right – on our mutual disabilities and regular + medical expenses we have too much money for our children to qualify for medicare services.

The only way to rectify this problem that I could see was for me to add Honey’s children to MY insurance. Have I told you how much Honey’s COBRA is costing us? And that I was giving serious consideration to not insuring myself so that we could have an emergency fund if we needed it? Ya, that isn’t going to happen. We are now paying an additional $540/mo to keep insurance on Honey’s kids. That is actually $371 more than it would cost to just insure myself. No stress here. No anxiety, none at all. Hey, did I mention that one of Honey’s required meds costs $299/mo? And that’s just one of them… How cool is that?

Top priority (after insurance) was making the home accessible to Honey and his walker. To that end, we had to get a new front door and have it open from the other direction (left-handed instead of right-handed), build a ramp to the front door and have additional banisters added to the stairs. We had friends offer to help with these things – but that didn’t work out quite the way I had hoped. Our sense of urgency for these items simply was not at the same level as that of folk who don’t have to live with us me. I will admit to a rather slight bit of neurosis in my attention to Honey’s needs – but I am thinking that a ramp could have been built within the first week that he was home…. Really.

So – because I so hate to have conflict with friends – or people I am in relationship with, the housing adaptions were causing me a lot of grief. I needed Honey taken care of and I couldn’t get into a conflict with the friend who wasn’t helping us the way I  felt we needed. It was ugly. It made me cry. It brought my relationship with Prozac to a whole new level.

Understand, I am the administrative assistant in our home. I call the insurance companies, I call the doctors’ offices, I deal with pharmacies and their divas, I am the chauffeur, I am the mom, the wife and the caregiver. I can do all these things with strength and (usually) kind manners. I cannot do the same with people whom I know. This is my great personal failure. I am working to overcome this issue, but I have been less than successful thus far.

In an effort of avoidance, I got in touch with a contractor whom had been highly “recommeneded” by the customer service people at Home Depot. They came by, looked at the house, went to price bannisters and come back with a proposal of $450 for the ramp and stairs and said they could get ‘er done on Thursday. Our 2nd opinion came in with a quote of $465 to build the ramp, put in two bannisters (rather than the just one that I thought we needed) AND removed the carpeting from the stairs so that I can sand and finish them (so they will be less of a slip & fall hazard). AND, AND, AND they could do the work right away. It was more than worth the money to get the job done expediently and without conflict.

In the meantime, we were still adapting to some major changes in our world. The least affected of our (human) boys seemed to be 6. He just rolled with it – as long as he could use the computer or was otherwise entertained, he was cool. In fact, this week just past may have been the best vacation we have ever had with him. He has grown up so much in the last year it is simply amazing.

I think that 7 rolled with things pretty well. This has been his everyday for the past coupla’ years. He is also a really empathetic and just seems to accept the reality of his world without any great stress (so far, I think). The hardest thing for him during the week was adapting to not being the only kid in the house and having to give up his room for Nana. When there is only one child in the house, there tends to be less interpersonal conflict. T(7) needs to learn how to work out issues with his brothers – more to the point, he has to learn how to be a brother. Not easy. The hardest thing for him was when he asked his dad if he could spend the night Thanksgiving Thursday since he would be weekending with him anyway – his dad said no ‘cuz his girlfriend was in town. Seriously? What kind of a dad does that?

10, on the other hand, was having some significant problems dealing with the day to day. He is the closest to his dad. He and Honey have always had an extremely deep bond and they are both so introverted that they are unable to express their feelings verbally (or in any way that I understand and am able to help foster). The acting out of emotions that were apparent to me included such behaviors as lying, whining, ignoring directives, demonstrating lots of exasperation and acting out physically with the youngers. These were the minor problems that I had rather expected from all of the children. No big deal, I am a behavior specialist after all. This is what I do.

The more significant problems seemed to revolve around the bathroom. At one point both of the littlers (6 & 7) came downstairs saying they could not use the upstairs restroom because it was too disgusting. Now, I tend to try to avoid that bathroom b/c I think boy bathrooms are nasty to begin with – but this required at least a look-see in case I actually had to tend to anything (flooded commode, maybe?).  That would have been easy. Grab a plunger, go to work on the potty, flush and be done. No, this was not as simple or pleasant as a blocked toilet –> this was shit wiped on the shower curtain right next to the toilet at just about the height that a 10 yr old hand would be were the child sitting down.

Mind you, this discovery was made right in the middle of dinner. I toughed it out, took down the curtain and put it into the wash. Done but for the residual ick and ruined appetite. No accusations were made – all of the family (Nana included) were informed of proper toileting behaviors and it was let go. Until the next time something shitty happened. The next afternoon, 10 ran into the downstairs bath to do whatever it was he had to do. He got sent back to wash his hands and that was that (I thought). The next lucky person to go to that room was me. Probably a good thing. There was poop on the toilet seat, 10 was called back in and shown how to clean up such an unfortunate incident himself rather than leaving it as a gift for someone else. We got out the bleach-water (I know this is environmentally incorrect, but this was shit on the place where I was gonna put MY bum), a rag and some rubber gloves. (Initially 10 thought it would be acceptable to simply run the bowl brush along the seat – thus smearing it around rather than actually cleaning). Lesson was given, seat was cleaned, rag thrown into clothes washer so nobody else would have to touch it.

Done, right? You would think so, but you would be wrong. When I went back in to do what I had to do, I found soiled toilet paper lying on the floor next to the toilet. How does one miss dropping paper into the bowl by such a vast distance? How does one not notice that they have missed the bowl? What is going through the mind of the person who does such a thing? 10 got called back once again to clean up after himself and was informed in no uncertain terms that if something comes out of his butt, he is responsible for taking care of it immediately.

At this point, I was aware that something was clearly very wrong here. And that I was completely unequiped to deal with something of this magnitude. I called the counselor that the family had been seeing and asked for an emergency visit for Honey and 10 to attend together – without the rest of us. Hopefully, they will be able to communicae with one another and maybe 10 will stop punishing us in such a vile manner.

Oh, he (10) also smooshed silly putty into 7’s flannel bedsheets and blanket. I am never purchasing  silly putty again – there was nothing silly about this at all. And the true coup de gras was when he hurt a 5 year old at Thanksgiving dinner. Apparently, the 5 yr old started it by poking 10 in the stomach. 10 felt that twisting his arm would be the best way to handle such behavior. To be factual, it did stop 5 from bothering him – but it didn’t stop 5 from coming and telling me that my big boy hurt him. Nice.

One top of all this, Honey is still trying to learn how to compensate for the consequences of his surgery. He did a very good job of keeping his temper about him all week – thank goodness – or I might really have lost it.

So, THAT was our Thanksgiving break. Bet yours seems much better in comparison.

Don’t get me wrong – I am extremely thankful – I am also extremely tired and nearing the knot at the end of my rope.

There are more stories. They will come in time. I still have “the parking lot confrontation” and the “key incident” to tell you about.

Love you (and the day school vacations end)

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Pressure – two weeks into it

I think this should be played on a loop in the background as you devour this post. Just an opinion – but I think the juxtaposition will prove pretty cool.

Today is the two-week anniversary of Honey’s surgery. There’s so much to tell that I am pretty unsure of where to start. I’d like to start at the beginning and go on to the end – but I am much too scattered for that these days – so this is more than likely going to look like a “stream-of-consciousness” reading activity. Which may actually prove very entertaining all things considered. I am visualizing a bulleted arbitrary collection of thoughts in no particular order.

Here we go…

  • it is always COLD in this hospital room. Wicked cold. Like 70 degrees in Guam cold. That kind of unexpected cold that seems to invade your bone marrow…. You know the kind of cold that I’m talking about.
  • we (I live here, too) have an awesome nursing assistant on this floor who could be a third in the Honey and Me comedy show. She has been a hoot to have around.
  • for the most part, everyone here is great. I have never seen a staff work together as beautifully as well as MDA’s P-8 Team. And, ya know what? It makes the stay more purgatory-ish than hellish – so this is a good great thing
  • although Honey is in the same room (P803 – in case ya wanna visit), he is now under the care of the rehab team rather than surgery. He has OT, PT and Speech/Language Therapy every day this (and last) week. Apparently PT is therapy for basic/large muscle skills (walking, moving – controlling the body in its space) and OT is for things you do during everyday living (shoe putting on, getting dressed, teeth brushing, etc). Twenty plus years teaching special education and I just learned this now? While I am glad to have been enlightened – it is kinda embarrassing that I didn’t know this before.
  • Honey is doing a fantastic job with his OT, he has made super-huge progress in the past week. Last Monday, he couldn’t control his left side much at all. He certainly could not pinch or grasp anything. Today, he picked up a tissue. (It is so the little things that make such huge differences.) I will know that he has totally mastered his OT when he can pick his nose without blackening his eye.
  • PT is another challenge. He is doing a great job with his walker. He talks to his limbs – reminding them of what they are supposed to do in order to move him efficiently and safely from one place to another. My dad used to do that following  each of his hip replacements. I remember him climbing stairs saying, “up to heaven – good leg first; down to hell – bad leg first”.
  • Speech/Language is pissing him off. For my SpEd friends – you will know what I mean as I explain his issues. Because his tumor was in the right parietal area of the brain, his left side was impacted physically. His math base and problem solving skills have been hidden from him at this point. With mind/brain exercises – he can rebuild new pathways to some of the information that he is currently unable to access. He is having to do tasks that will provide a baseline for the SLP to develop a program for him (an adult IEP, if you will). These tasks include tracking (left to right) through a line of print and circling a certain word as many times as it appears in that line. He finds such juvenile work to be offensive and humiliating (I think the humiliation is linked to that fact that he is finding himself working hard to do things that used to be second nature.)
  • Honey is a much stronger person than I am.
  • I am a much stronger person than I ever thought I could be.
  • I dropped my brain somewhere along the path last week and have not yet been able to find it. Even with a list, I can’t seem to get much of anything done in the time that I am home except to walk around the downstairs looking for something – but I am not quite sure of what I am looking for – therefore, I never find it.
  • My mom arrived from California this past Saturday late night. I left MDA at 10:20 to get to the airport for her for 11:20pm arrival time. Her plane came in 20 minutes early. I kept making wrong turns because I was approaching from the south instead of north. I so totally was not there when I wanted to be, Mom had no checked baggage so she waited a bit of time for me to rescue her from IAH. I drove her to our house in The Woods – told her I had put clean linens on the boy child’s bed and turned around to go right back to MDA. She has been here three full days and I have seen her for maybe five hours total.
  • Next week is Thanksgiving vacation already. Damn.
  • Honey gets dismissed from MDA on Friday. Vacation starts on Friday. This is our year with three children over the holiday break. My mom is also here.
  • I looked forward to school breaks so much more when I was in the classroom. Vacations were even better before I had children to share them with. Ahhh, the memories. I remember being able to wake up when I got around to it, eat what and when I wanted, do absolutely nothing all day if I so desired – I remember when I lived the life my children live now.
  • I am afraid of what next week will bring my way…. maybe I need to put myself in long-term time out now.
  • Big Lots has fleece sheets for sale for $20. Can you imagine sleeping in fleecy loveliness this winter? I believe I NEED to get me some of these.
  • I recently realized that I wear yoga clothes about 70% of the time. I have never taken a yoga class. I gave up wearing my fleecy jammies outside of the house last year for Lent. It looks like I simply substituted a more acceptable form of lounge wear for public viewing.
  • I believe more and more that we actively choose the lives we live and then stumble around trying to do our best to live them well. I am not quite sure of the lesson I thought I needed learning this time around – but I hope I’m doing it right – it would suck to have to take a redo here.
  • Baxter and Kitty are having a tough time with me being gone. Kitty disappears and comes back when I am home and then he and Baxter are both trying to climb up my leg whenever I stop moving. If they were my children, I would swear they were trying to reclaim my womb.
  • Carl and Soren are pretty much content with each other. As long as there is a soft chair to sleep onand food in their bowl – they are okay.
  • There is an anole in the downstairs bathroom. Both my mom and the boy child are using the potty upstairs exclusively. I tried to return the lizard to its natural home out front, but he kamakazied off the sink to behind the toilet and then I decided if he wanted to stay in there that badly, I might as well let him. Since he is no longer on the sink – one of the twins will likely find him and I will be vacuuming up lizard legs tomorrow.
  • I am tired. No, I am weary. Maybe exhausted is the word I’m looking for. Too tired to tell for sure.
  • I love you (and lists – I really love lists)

 

1st post surgery update (sorry for the delay)

This will be the third time I have started this particular blog entry.

Somehow I have lost the first 2 attempts. Which is not at all that surprising all things considered. I will get to this later – right now, let me tell you how Honey’s surgery went.

It went so much better than we expected it would.

They removed a 5cm x 7cm recurrence of the original cancer from his right parietal area of the brain (that is pretty big, by the way). They got awfully close to the motor cortex (or the tumor got awfully close to the motor cortex) so there is some left side paralysis. Honey has all of his strength – he just has no feeling as to where his limbs are in space. (think when your leg is asleep BEFORE pins and needles set in).

Honey will be staying here at MD Anderson Houston (main bldg – rm P803 – phone # 713-834-8711) for at least another week for inpatient physical and occupational therapy.

He is learning how to use a walker now and he is doing a really good job. He orally reminds his limbs what they should be doing and where they should be doing it. I think this might help him to reroute the neural connections that make such tasks as walking, picking things up, wiping your butt and scratching automatic.

His scar looks so wicked cool! DrL did some reconstructive/cosmetic work on Honey’s old scar when he was in there. For any who remember, he used to have a rectangular cut with very thin skin covering over the plate. The dr filled in his divets and did a super nice job on his stitching. And, ya’know that chicks dig scars,so Honey is a pretty lucky guy in so many ways.

He’s also in a really good mood. (I blame the steroids) We have been having a great time with the nursing staff here. They may need to stop being so nice to him. I think he is beginning to realize how much better he has it here than at home…. ‘Course, these people are being paid to treat him well…

For the past couple of days, I have been running around and around and around. I went home for about 5 hours yesterday and all I got done was to put like,maybe 5 bowls and some silverware in the dishwasher and set that to clean. I made sure the animals were fed and took a shower and shaved. It was the most I have accomplished in I don’t know how long. The rest of the time I was home, I spent walking around the living room and kitchen looking for stuff that I had just had in my hand. Apparently, I would put things down and they would get sucked into the invisible black hole vortex that exists somewhere between the dining area table and the sofa in our downstairs. Four hours of looking for stuff I had just put down and half the time I couldn’t even remember what I was supposed to be looking for – and no, I never found any of my lost trinkets.

I did get around to checking the mail – finally my letter of confirmation of insurance came in. Now I will just need to make an appointment with KISD to switch up my insurance. I think mine is only going to cost about $250/month – so that is awesome. Well, awesomer than Honey’s $485-ish COBRA anyway.

ALSO – I got a wonderful goodie basket from a friend we met over the summer at OCF. She sent teabags, candles and See’s chocolates. I love her. It is always a wonderful surprise to be remembered by someone and an even greater treat when that remembering involves tangible rewards.

My brain is a little tired. I want to get up to church today, but will definitely need a short nap prior to getting on the road- so I am signing out now – there is so much more to tell – will shoot for getting back to you this afternoon.

Love you (and See’s chocolates)