Thursday, July 28, 2016

How a Childhood Gem Let Me Off the Hook

After going through a house move and an office move last year you would think the last thing I would want to do is unpack more boxes. For some crazy reason, though (probably because I am actually crazy), that’s exactly what I did last weekend.

Richard went to the Bay Area with his mom and brother to see his other brother’s new grandson (exciting!) while Robert and I stayed home and hung out with the dogs. Robert slept quite a bit which gave me an opportunity to get things done around the house.

I started by creating the to-do list of all to-do lists.

I have no idea why I had so much energy – especially since I had given up caffeine the week before. You’d think I would be comatose on the couch, unable to move without my Venti  Non-Fat, No-Whip Mocha (or two) coursing through my veins.

Mmmmm, mochas.  . .

Anyway, I digress.

I started by looking for copies of my book, Forever a Caregiver. I was sure I had extra copies at home and thought they might be packed away in a box in the garage.  I was determined to find them!

Well, one thing led to another and I searched through several boxes in the garage, which then led to (don’t ask) cleaning out and reorganizing not only my bedroom closet but my office closet and Robert’s closet.

Then I cleaned the house.

I started wondering if I accidentally drank actual coffee instead of the stuff in the cabinet labeled decaf.

I never did find my books but I did empty a lot of boxes. A delightful surprise when emptying those boxes was that I found a lot of old photos and even ran across letters I wrote home from my Girl Scouts summer camp.

Oh boy!

These letters were not only fun to read, giving me a glimpse into my 10 year old mind but they also gave me a gift. As a young adult, I had reread some of my diaries which caused me much distress.  (Note to millennials: these were small journals with tiny little locks that people used to write their innermost thoughts and then scream and yell when a pesky little brother tried to break the lock and read all the secrets contained inside. You know them now as “Facebook” and “Snapchat.”).

In one of my diaries I asked “Diary” why little Robbie bothered me so much. In fact, I told Diary that I didn’t think I even liked him.

Oh, ouch!

That was tough to read. Was I a terrible older sister? My goodness, my little brother went through all kinds of crap at school and with having seizures and here I was saying I didn’t like him? Where was my compassion and empathy and patience?!

These letters that I wrote during summer camp (and Mom was kind enough to save for me) showed me a different kind of big sister than Diary had led me to believe.  I only found three of the letters but they were enough to reassure me that I did have compassion and empathy and patience and didn’t just accidentally come by it as an adult.

Let me share these letters with you. Keep in mind I have horrible memories of summer camp. My homesickness knew no bounds and I have no idea why I agreed to go year after year.

I suspect these were written in 1971 or 1972 but I don’t really have a way of knowing for sure.  I changed my nickname from “Patti” to “Tricia” when I was 12 so these were written before the big name change.  (I am including the typos and misspellings even though it kills me to do so!)

July 13

Dear Robbie,

How are you? I’m Fine.

Thanks For the Letters. The’re cute. Only two more days and I’ll see you!

Did you get mom a birthday present? Have you had a wedding rehursul yet? Did you get your tux? IF you did I bet you anything you’ll be the best ringbery in History. I love you. Have you been swimming? I Hope so! If you were Here when there was mice in cindy’s Footlocker you’d Kill them, I know.

Well bye!

Luv ya,


P.s Please write

Was I actually advocating for killing mice? Yikes! Definitely was my pre-Animal Rights/Vegetarian days.

Then there’s this (and I don’t think we were required to write home daily – it was the homesickness, I’m sure!):

July 14

Dear Mom & Dad,

How are you? I’m Fine. We just got back From the overnight. I didn’t write last night cause we could not. We had to go to Bed. I only have four pieces of Paper so I’m writing you together, the boys together, grandma and grandpa together & the other grandma & grandpa togeter.

Please send me Eddie’s, Rogie’s, Great grandma’s address (nevermind) cause it’ll be the Last day when I write. Tell Eddie Hi Rogie Hi Julie Hi Lynda  Hi & steve & tod Hi, ok? Are you still working good, dad? I’m sure you are. Well sorry it was such a short Letter but I don’t have enough paper.

Luv ya,


P.S write Soon

Apparently, my paper multiplied . . .

July 14

Dear great swimmer & handsome

How are you? I’m Fine. I’m writing you together cause I only have 4 pieces of paper. We are about to Have Lunch. What are you haveing For Lunch? I don’t know what we’re Having. are you going swimming at cryer ave? I’m going at 2:30 I have to eat lunch  Bye

Luv ya,


P.s Write soon

Posing with Dad, his parents and two of his brothers
("Robbie" is on the left, Other Brother is next to him)
Finding these letters not only gave me a slightly better looking garage but gave me some peace of mind about how I treated “Robbie” when we were kids. I never really thought about being a sibling of someone who needed extra care and attention. It never felt like it affected me as a child but I now realize it affected me as an adult. Not because I felt left out as a child and carried that with me (that was obviously impossible with our close, extended family) but because as an adult I wondered if I treated Robert with care or if I was impatient and terrible toward him and felt guilty about it.

I definitely had my moments of impatience with him that I distinctly remember and that most likely ended up in my diary but I realize I did care about “Robbie” more than I realized.

Thank goodness “letting go of guilt” can be crossed off my to-do list.

Wednesday, July 20, 2016

Family Traditions: Going to the State Fair!

One of our family traditions is to walk around the California State Fair in 100 degree heat, maneuver between the crowds, eat the latest, crazy concoction (deep-fried Twinkies are not nearly as good as you might imagine), see the animals and, if we’re lucky, see a cow giving birth!

It isn’t for everyone.

People I have convinced to go with me under the guise of “it’s the best thing ever!” have dropped out from going, well, twice.

Mom decided “never again” after trailing behind me and four-year-old Rachel in 110 degree heat and nearly fainting.

Come on people! Keep up! It’s a dry heat!

“You can come back to get me on this bench when you’re done” she quietly uttered as she patted at the sweat pouring down her face and neck. It actually was probably more like “There is no way IN HELL I am moving from this bench and DO NOT even THINK about inviting me next year!”

Soo, I suppose this means next weekend is out too?

Yes, I would take Rachel to the fair a few times each year. Yep, you heard me, we went more than once each year. Hey, there’s a lot to do! Face-painting, feeding the baby animals, watching the bungee jumpers plunge to their near death, eat, ride a few kiddie rides and win a goldfish or two (which, by the way, only live about three days. Now that was traumatic.).

Rach loved it! I mean, sure, she was little and was my captive but she really loved it. (Right, hon?)

Christopher and a friend tagged along one year when everyone else was “busy” and they were teens who I somehow managed to pull away from their video games (it must have been the promise of a lot of food.) We stumbled across the live-birthing area and, as they say, timing is everything! We witnessed a calf being born which both fascinated Christopher and his friend and traumatized them.

Soo, Chris (and his friend) are out as repeat visitors.

One year I even convinced my best friend to go with me and to bring her nephew. Two of us had a good time anyway. Did I mention BFF isn’t really a crowd-loving, junk-food eating, people-person?  Bonus: I think Nephew went home with a goldfish! Which lasted a few days . . .  

Sooo, BFF is out.

One year we had my cousins and aunts and uncles visiting from my home state of Nebraska (GO HUSKERS!) and they wanted to do something fun. I casually mentioned the State Fair was open and they actually wanted to go! Oh my gosh! This was the best thing ever! I didn’t have to bribe them or anything!

I haven’t seen them since but I think that has more to do with everyone being busy and several hundred miles away than the State Fair. I’m pretty sure.

Now that we care for Robert, I have another captive to take to the State Fair! No, no; he actually wants to go! Really!

Richard comes along but I think he considers it more of a duty to his crazy wife than something to look forward to every year. Although I have seen him smile plenty and he always readily says yes to my suggestions of going. He even has his favorite places to visit!

I think it might be growing on him!  

Much to my delight, my original little captive even comes with us! We don’t do face-painting like we did when she was four but we do spend some time with the goats (one of her favorite animals) and visit the birthing center (darn! No births this year!). We visit the exhibit halls now and not just for the refreshing AC.

We always end with some State Fair ice cream that only tastes delicious if it is running down the cone making our hands a sticky mess. (Robert has to eat his in a cup because he himself might melt if his hands got sticky.)

I absolutely love family traditions. They might be messy and they may slightly change from year to year and sometimes they might even be skipped for a year or two but they still leave a warm spot in my heart with memories to cherish forever. 

Although that warm spot might be heatstroke from the 100 degree weather.

Either way, it is one of my favorite family traditions.

Sunday, July 3, 2016

Steady as She (He) Goes

Shh! Let’s keep these thoughts between us. I don’t want to jinx myself!

Robert - Ready for the 4th of July
party at Day Program
Winter is a rough time for Robert. There are numerous seizure clusters, he is constantly on the brink of pneumonia and, most days, can barely stay awake.

Summer is a whole different story!

Robert’s seizures decrease, his congestion is steady yet manageable and he is awake and a delight.

I suppose the key to keeping him healthy year-round would be to move to a climate that is warm and sunny all year.  Since that is not possible (unless I can magically transplant my entire family, my job, Richard’s doctors, Robert’s doctors and day program to a year-round, sunny climate), we have to just get through winter and enjoy the break that summer brings us.

And we are!

We have been in our new house for a year and have happily settled into a routine. Robert loves having his own bedroom and I love the bigger bathroom in which to bathe him (heck, we even have a tub/shower for him! No more baths sitting on a chair and using the sink and a thousand towels to keep the floor dry!).

Richard loves having a one story house which means less pain for him on a daily basis. He has created a beautiful garden in our lovely backyard and we have been enjoying the fruits of his labors (tomatoes, blueberries, zucchini – I can’t even name everything he is growing!).

My work commute is cut in half (if not more) and even things at work have settled down after our big move last year. (I am so grateful last summer is a distant memory!)

We are organizing and decorating and settling in and doing home improvements instead of packing, unpacking, showing our house and trying to find a new place to live.

Life is good!  No – to borrow from Robert: excellent!

Of course, there are hiccups. We have made acquaintance with the local paramedics and they are familiar with us and our new address. No major emergencies but enough that they’ve had to come out a few times.  For us as caregivers, used to living on the edge and always on high alert for the next hospital stay or medical emergency, this is minor.

Comparatively speaking, things are really good.

Robert jokes and laughs and hasn’t had a blow up in quite some time. This means he is not stressed out!

Robert continues to love his Day Program and from what I can tell has many friends.  (I asked him once who is best friend was at Day Program and he told me, “They are all my best friends.”) Such a diplomat!

Robert’s drivers adore him and he comes home from program happy, albeit usually ready for a little nap and a little Family Feud time.

He is still slow and sometimes sleepy and we have had to stop a few seizure clusters with Ativan before they got out of control (even the Ativan has worked lately to stop the clusters!). We have to coach him to eat so meals take 90 minutes instead of two hours. I have my moments of frustration with the slowness but that just tells me I need to take a break.

That is okay too.  

We are within walking distance of one daughter and her fiancĂ© which makes me one happy mama. I have always dreamed of a family compound (you know, not living on top of each other but close enough to spend time together and help each other out). Now we need to convince everyone else that my idea is not at all crazy. Close but not crazy close. Who’s with me?!

The dogs are even well-adjusted and happy. Sure, Puppy needs more training but now we have time to devote to that and he is responding well. We will get there!

Healthy, happy, settled and enjoying life. What more can we ask for?

Of course, “winter is coming” is always in the back of my mind (and not just because I am a Game of Thrones fan) but that is not for a while.  For now, we are enjoying summer. We are enjoying the smooth sailing.

Summer is here.

Life is good.