My Sister’s Keeper

I am one of six children. That is part of my identity. It’s simply one piece in the puzzle of who I am. I am 1 of 6. Specifically, I am #4 of 6. My niece has 6 little girls, the oldest being 11. My sibling journey was not like that! There is a 20 year spread between my oldest sister and my youngest. There are 9 years between my older brother and me. My Mom and Dad just, apparently, wanted to spread out the child rearing years! But we never had all 6 kids in the house at the same time. My oldest sister had my first niece just one month after my little sister was born.

Actually, we never had 5 kids living under the same roof. You see, my 2nd sister lived at home for about 8 years. And then she didn’t. My 2nd oldest sister was brain damaged at birth. My Mom took care of her at home until she couldn’t anymore.

Mom, big sister and sweet, curly-headed Bonnie

Bonnie is, developmentally, about 3 months old, though physically, she developed normally. By the time she was 7, she weighed about 20 pounds less than my Mom did. Mom gave all she had to taking care of Bonnie, while also raising my oldest sister and my older brother, but it took it’s toll. Mom weighed about 90 #s at 5’5″, was agoraphobic and was, quite simply, sickly. Mom and Dad made the decision at that time to put Bonnie in a “home.” In my lifetime, Bonnie never lived with us. To me, she was always at “Ridge”. I don’t know all the details, or even really, any of the circumstance. Mom never talked about the process, the struggle, the heartache. She did talk about their search for an answer when Bonnie wasn’t developing. There was no answer.

Mom retained guardianship over Bonnie, but Bonnie is a ward of the state of Colorado. She now lives in a group home with 7 other individuals who require around the clock care, like she does. Years ago, the state disbanded the physical institution that was Wheat Ridge Regional Center and decentralized into several group homes around the city. I’ve always known the name of the house where Bonnie lives, but I’d never been there.

I remember the last time I know I saw Bonnie. I was about 8. It was a Christmas party at Ridge. And it was terrifying! I have very specific, but very sporadic memories from that party.

The sugar cookies and the red punch. But also the mattresses on the floor, the smell, the deformed people, the anxiety pouring from my Mom.

I remember feeling an overwhelming need to protect my little brother and sister. From what, I don’t really know. I suppose from the strangeness of the situation, and perhaps the feeling that we were on our own, as the adults in the room where all busy in their own way. My Mom, with her guilt and anxiety, my Dad with his need to care for Mom. I took the kids to the dessert table to get a cookie and some punch and then I headed to a corner. There was a mattress on the floor that nobody was using. It was about a foot away from each wall in a corner of a room. I sat the 3 of us on that mattress, facing the corner, with my little brother (6) and my little sister (4) closest to the corner. I used my position as a barrier between them and the goings on in the room. And that’s all I remember. I will say, any time I see those cookies, I think about that party.

When my Mom was failing, it came to one of the kids, my surviving siblings (my oldest sister died at 62 several years before all this came about) to figure out who would become Bonnie’s guardian. By then, I’d basically taken care of Dad, my little sister got Mom and it ended up that my little brother got Bonnie. As it turns out, he was the best choice, too. He was all the good and kind and dutiful pieces of all of us. He was truly the best of us. He’d visit Bonnie on several occasions throughout each year, attending events. His wife would bake cookies and he’d take them to share. I remember talking to him one time and he commented that he didn’t visit for Bonnie, as she had no recollection of him at all, but he visited for the staff. To encourage them and to be a presence. To make sure they knew that Bonnie was not alone in the world. That she had a family who loved her. He was our face, our voice, our presence.

And then he died.

And we were all devastated. As I said, he was truly the best of all of us and his death left a huge hole in the world. And it left Bonnie without a guardian.

And somehow, I became her guardian. I did my due diligence with paperwork, with conferencing with Bonnie’s care team on a phone call, to introduce myself and listen to each one’s part in caring for Bonnie on a day to day basis, year after year. I talked at length with Bonnie’s primary aide, who told me stories about Bonnie’s favorite treats, or painting her nails, or fixing her still curly hair. And I made plans to go visit, and changed those plans, and cancelled those plans, and made those plans again. I used health issues of my own to excuse continually putting off those plans. And every time I thought about going to see her, I remembered a long ago party, and was again, a terrified 8 year old.

Then I finally did it. I went to go see my big sister, my oldest surviving sibling. My little sister and I went together. And I was still terrified.

And it was fine.

Actually, more than fine. The home Bonnie lives in is spacious and clean and pretty. The caregivers I met that day were industrious and kind and so very happy to meet us. The feeling inside the house was calm and peaceful, neat and organized.

And my little brother was there in spirit. On Bonnie’s lap was a bodhran, an Irish drum. Apparently, she likes the sound sometimes, though she didn’t beat on it while we were there. Brian brought a bodhran back from Ireland when he and his family went to explore our ancestral routes several years ago. I loved to hear him play it, though his instrument of choice was a guitar. But every time I see a bodhran, I always associate it with him. And there he was, sitting in Bonnie’s lap.And the shirt she wore and her fingernails were painted a color I always call Posh Plum. The night before my daughter died, her girlfriends came over and gave her a manicure. I’ll never forget watching them gently tending to their friend, my girl, while sharing stories and laughter and updating each other with the goings on in their life. They even had a far away friend on FaceTime so she could be there, too. The girls painted my Angel’s nails with Posh Plum. And there she was touching my sister with silly fingernail polish.

Having my little sister there, to walk with me down this scary path, my little brother and my daughter there in spirit, reminding me that none of us are alone, and holding my big sister’s hand while my little sis and I made small talk, seemed right and good and OK.

And I’m no longer terrified.

 

It Takes a Village

I am, most generally, an independent sort. I think about a toddler’s “Me do it!” and that pretty much applies to me. I remember commiserating with my BFF about our cur-sed capable-ness. We decide what we’re going to do and then we just do it. I, long ago, learned to “save” some things to ask the Hubs to do, just to encourage the partnership piece of our relationship. Just because I can do it, doesn’t always mean I should.

I sometimes find “relationship” to be hard. I don’t make friend easily, and would always prefer a conversation with one person, over a group situation, especially a large group. I am thoroughly introverted, finding my energy and resources replenished in solitary pursuits. I am not shy, and can fake it with just about anyone, in most circumstances, (basically, I know how to act in public!) but I find being in need, which primarily means needing someone else, a bit of a daunting prospect.

That is, until I remember what Community means. And how Community changes everything. There is a common saying that “It Takes a Village”. This is primarily applied to raising children. I know my Brother and his Bride, next to Hubs and I, considered that we pretty much raised our children, 5 kids in 20 months, between the 2 families, in a Village. All 5 knew that they were accountable to multiple adults in infinite situations. We collectively loved and celebrated and scolded all of them, with solidarity and shared experience.

I was reminded, when Jen was sick, of the beauty of Community, the “It Takes a Village” part that applies outside of raising children. I spent 20 months as primary care taker for my daughter. She and I were very isolated, and often felt very alone, in our respective footprints of that time and space. But we, universally, knew that no matter how alone we FELT, we actually were NOT alone. We both found comfort, consideration, laughter and connection from literally hundreds of people, across the nation and truly around the world. Not a day went by that one or both of us didn’t receive a text, an email, a FB message, a letter, a phone call, a CaringBridge reply or some other form of hug, virtual or actual, from someone hoping to make sure we knew that we were not doing life (and ultimately death) alone. It was affirming and beautiful and so very necessary. Community kept us sane and grounded.

In my present battle with the beast, I have, again, been reminded of the salve that is Community. I know, beyond a shadow of a doubt, that I am loved. But I also know how very affirming it is to be told the truth of that! I am immensely thankful for the outpouring of true and genuine heart that I have received. The cards, notes, messages, texts, phone calls, FB posts, gifts, flowers have buoyed my spirits, given me courage and reminded me that I. Am. Not. Alone. All of these things, along with the thoughts that were experienced but unshared, were felt by our heart’s connection. It’s the heart poured out in intention, that is carried by the Spirit of Love.

I have to share my most favorite sharing of a heart with my Community. My sweet great niece, my Goddaughter, sent me a card. Her mother transposed her message, though she signed her own name, drew me a picture, (including pockets on the pants!) and sent some yellow rose petals. The best part though, was the opening line:

I love you so much, I even want to play with you!

What more is there?

Sending Love and Thankfulness!

Hi Mom, (Reposting from 5/23/18)

Hi Mom,

I’ve been thinking about you so much lately. Yesterday was the 4^th anniversary of your Angel Wings. How is that possible? Sometimes it feels like you’ve been gone forever, and sometimes it feels like if I pick up the phone and dial, you’ll answer with “Hi Ree” and everything will be as it was.

I could use a Mom hug right now. I can feel your hands in my hair. Smell your Estee’. See the fire of love, determination and connection in your eyes.

Mom, I have breast cancer. How is that real?? But it is. K and I met the surgeon today. Lovely woman. Bright, thoughtful, kind. A beautiful smile. And most important to me, she treated me as an intelligent person with thoughts of my own, ideas, plans, feelings.

If I could talk to you while you stroked my hair, I would tell you that it, not MY cancer, but THE cancer, is all the good things cancer can be, like slow growing, small, early and isolated, but it is insistent I address it in real time. I’ve been scheduled for conservative surgery in 3 weeks’ time, followed by radiation for 3-5 weeks. I have a couple of additional tests in the works, which may change that plan to a more aggressive surgery profile, but for now, we will start with the reasonable.

Mom, you and I know I’ve endured worse. And yet… I sit here a little numb, a lot mad, and not just a bit scared. But I also am thankful. I’m thankful for fancy diagnostics, with computers to assist and Drs who make it their life’s work to catch and call out and treat. I’m thankful for resources and space to do what needs to be done. I’m so very thankful I am not alone. I know I have legions who care. I have my Angels who are surrounding me, holding me, begging for me. I know beyond any doubt that I am loved.

I learned many things when Jen was battling, and dying. The biggest thing I learned: Love is everything. Love is all there is.

I Love You

Out of sorts

I don’t feel like myself. Haven’t for a while. What does “myself” feel like? I’m not absolutely sure, I just know this isn’t it.

I’m slow and hurting and cranky beyond bearing. My endurance is shot, my confidence in my body positioning is waning and I just feel completely out of sorts. I can’t hold a thought, I’m tired but can’t sleep. I’m stiff and achy and drained.

I know much of the why of all of this. 6 week’s ago I had some major realignment of my right foot. It needed to be done, so I did it. Or rather, I had my foot guy do it. I knew the recovery would be restrictive. Non-wt bearing, knee scooter, swelling, pain, rehabbing for function. And no traveling for work. Well, not entirely true. I did sucker Hubs into traveling with me to be my Sherpa for one Grand Opening. But considering I’d been on the road 11 of the 16 week’s prior to the surgery, the brakes came on pretty hard.

And then enter breast cancer. I’m not new to a cancer journey, having walked as closely as possible to Panda while she was battling, and dying, but I have not walked my own cancer journey until now. It is COMPLETELY different. And I’m not really sure why.

I do know surgery on the heels of surgery has not been any fun. I know the cortisol that is the long term version of Adrenalin is hanging around longer than I’d like. I do know that good news when you are traveling a cancer road is always tempered with, “what next?” And the answers are so slow in coming it’s a bit like watching paint dry in the jungle. Does paint ever dry in the jungle? Are the answers ever all laid out on the table at the same time?

Today, I took the bull by the horns. I’m ready to recognize myself in my heart. So today, I washed dog poop off one dog’s back (seriously, why do they roll in poop??), hauled a shop vac to the store and deadheaded my iris patch. Pretty sure that’s all I’ve got in me today. But it’s something.

I’ll find me. Wonder what I’ll look like, sound like, think like? Pretty sure I’ll be OK. I kinda like the way the deadheads look. A measure of their former self, ready to become something different.

Just Hi

Hi Honey,

Snow in Michigan is cold!! Brrr!!! Arrived this week with no luggage, which, even with all my years of travel, almost never happens. It was a bit like my luggage was on a home alone adventure! I’d planned for it, tagged it and passed it off to the right person, it just didn’t follow me! Luckily for me, for some reason I had 2 sweaters on! I knew it was going to be cold this week, so planned several layers, but usually, I don’t like to carry on a bunch of stuff so in the winter, I wear a light sweater and in the summer, I always have a pashmina, in case the air on the plane is cold, but bare bones! Thankfully, double sweaters!! Guess my luggage told my sweaters I would need them, since my luggage didn’t arrive until after midnight. No jaunts to see Lake Michigan! 

Good week, lots of people I’d worked with in the past, so it was a comfortable training week. The hardest part about this week was not getting to bed at a decent hour! As in, I have to get up before 5, and lights out at 1:30! I’m like the worst rebel child when it comes to going to bed! I can just hear my inner 3 yr old saying, “but I’m not tired!” Guess I better fix that tonight!

Been spending a lot of time thinking about my trip to Tanzania 3 yrs ago. Man, Girl, next to walking with you through your cancer journey and you gaining angel wings, that was the hardest thing I’ve ever done. In some ways it feels harder. And I did it so poorly. That’s probably why it still feels hard! I’ve never undertaken something, before, and simply not had the heart to see it through. Had I knot been a world away, I would have packed up my toys and gone home early! It would have been easier to take my heart out of my body and stamp it underfoot. At least that, going in, is consciously impossible. I’ve realized the shame I’ve been carrying around about that trip. My uselessness, my weakness, my neediness. The only thing I did useful on that trip was donate a lot of money and make paper cranes. And learn things about myself I didn’t want to know, and watch others do the hard, anyway!

But, in these last few weeks, I’ve been able to identify the shame, acknowledge it as my past truth, and ask it to take a bow out of my heart and mind and life. I’m not sure it ever served much purpose, except to highlight my arrogance, which was useful for me to recognize, but it certainly is not serving me any longer.

So today, I’m thankful for a broken heart, I’m thankful to recognize that I do have a threshold, over which I am not only reluctant to cross, but perhaps incapable. And that is just the way it is. 

I’m thankful others are capable of crossing that threshold into the world of giving and helping and hard, hard work. I’m thankful for guilt and I’m thankful that guilt has served its purpose and is no longer required. 

I’m thankful for sweaters and luggage delivery and comfortable work. I’m thankful for snow and crispy air and super thankful that I did not need to be outside in the frigid today!

I love you, I’m headed home…

 I’m thankful for today!!

Camping w 4 dogs

Living with 4 little dogs, all combined 34 pounds of them, is a bit like living with a circus, or really like living IN a circus! Dogs are basically toddlers that you allow to stay home by themselves when you go to work, or to the store, or on a date, or… And somehow we let them govern themselves while we carry on about the tasks of life. 

Life with pups is hilarious and maddening and enlightening and sweet and warm and burdensome and perfectly imperfect. They each, in turn, have their own distinct personalities. Their own voice, if you will. One loves a walk, one not so much. One is food motivated, another love is the only motivator.

Taking 34 pounds, spread out in 4 different personalities, camping, is infinitely that much more entertaining. A circus on the road!!
Mia, the oldest, is our daughter’s first dog. Our daughter is an Angel, now, so Mia is permanently in our home, but she’s still our first grandpup. Mia is interested in everything, looking at the world as a lovely place, where surely only good things happen. Whatever is on the agenda, she’s excited to do it, because it’s going to be great! She doesn’t really like being in the car, it makes her nervous, because she is too much a thinker, but she really wants to go in the car; because it’s going to be great! And then she gets in the car and remembers that she doesn’t really like the car! And it’s not so great… But as long as the car is moving, and she has her kennel, she just muscles through, because, you know, it’s going to be GREAT! And then we get to the mountains and it IS great! The bed is great, the campsite is great, the walk is great. Well, maybe the stairs into the camper aren’t great, but as responsible grandpup parents, we take care of that. Mia is willing to go along with whatever is proposed, and makes sure that just because we are camping, doesn’t mean dinner isn’t still at 530p, dentasix at 7p, chicken chips at 8p, and a treat for every time, she or we enter the trailer!
Sophie is next, our daughters youngest. The spitfire of the group, all 5 pounds of her. She’s the self appointed protector of the pack, all of the pack, people and dogs alike. At home, she heads out the dog door everytime someone walks by, to make sure they don’t touch our stuff, her stuff, anybody’s stuff!! It took me a while to figure out her problem. Her problem was that I am gone enough, that she figured I couldn’t possibly have the perimeter under control!! Once I figured it out, I started telling her the warden gig was not her job. She didn’t much like it, but the defensive stance has much improved. She still barks, but I shush her, now, and the next bark is a diminutive inside voice. However, camping is open season for Sophie when it comes to protecting the pack! Who knows what could be out there? So, as we open the door to the camper, she heads out barking, just in case! God forbid she should ever actually have something to bark about! The beaver we saw outweighed her 3:1, and I’m sure she wouldn’t win in a moose vs Sophie contest! She likes the walks, too, like Mia does, and gets a little excited on the return trip, circling the other dogs and baiting them, especially Mia, into chase and wrestle games. So fun!
Next is Lacey. She should really just be called Daddy’s Girl, because pretty much, her sun rises and sets with her Dad. We got Lacey one week before our daughter got sick and as I spent a good amount of time attending to our girl, Lacey became Daddy’s Girl, because for the first time, he was the primary caretaker and trainer of one of our dogs. Lacey is fearless, (except when someone is wearing a hat) and darling and thoroughly impressed with herself. She pretty much doesn’t think the rules apply to her. Calling her to the “jail” we use when we leave the house, causes the quizzical “but you only mean them, right? Not me! I get to go with you, because I’m Lacey!” look. We thought for a long time that Lacey was the alpha of the group. (The humans are the true alphas but in the dog hierarchy…) primarily because she is so self assured. I’m pretty sure that she’s given this over to Sophie, just because she doesn’t really count herself as one of the masses, being much too princess-like to bother with ranking! Lacey is a little desperate when the car is being loaded, constantly underfoot, making sure we don’t forget she gets to go. Once she’s in her kennel in the car, she settles in for the long haul, because she’s content to just know she gets to go. Camping with Lacey was truly a toddler experience. She’s off to explore, and running back to touch base with her people, mostly her Dad, and off again. Occasionally needing to be stroked and held and talked to, just to reassure her that princesses do, in fact, like camping.
Finally, there is Mocha. She’s the biggest of the group, the biggest dog, at 16 pounds, and the biggest sissy. We affectionately call her Moose, because she doesn’t quite know where all her body parts are, though she insists she is a delicate flower. She is a lover, who just needs some attention, and butt-slams the other dogs out of the way to get it! Mocha is the one who lays on her back on the bed, feet in the air, while the others are thinking they might want to actually DO something. She doesn’t love walks, stands obediently at the door to the car, resigned to an adventure NOT of her choosing, and steals any treat, temporarily dropped, by anyone. She’s the one who rolls her eyes like a teenager. Protesting with attitude,  the fact that just because we are in the mountains does NOT make her a country girl!

Hubs and I often antrhopomorphize the dogs, assigning them speech, inflection, human thought, because we’re pretty sure they have human thought! Anyone who has a dog pretty much knows they have human thought! Here’s a conversation from our recent camping trip

Mia: Yea, we’re here! Where are we? Isn’t it great!

Sophie: It’ll be great after I make sure there are no bear anywhere within 50 miles! Shhh, did you hear that?!

Lacey: Wait, I have to pee on your pee spot! Where’d you go?  Where’s Dad? I LOVE camping.

Mocha: Are we done, yet?

Mia: A walk? Yea, a walk! OMG, I don’t think I can breathe, what’s the altitude here? Sophie, leave me alone! Isn’t this great?!

Sophie: I scared it away, did you see that? Let run! Come on you wimps, RUN! Wait, did you hear that?!

Lacey: I love a walk, don’t you? Where’s my Dad? Dad, love me!

Mocha: Seriously?! A walk?! Can we go home, now?

Mia: Hey guys, it’s dinner time. Let’s stare at them until they remember! They may need more vocal reminders than stares… Isn’t this great?!

Sophie: I’ve scared so many things away, I don’t think I can eat. But no, Mocha, you can’t have it! I’m just going to eat really slow so you start drooling! What was that?! Did you hear it?!

Lacey: I think I might be able to live on love alone… No Mocha, you can’t have mine, either. Where’s my Dad?

Mocha: Girls, focus! If you’re not going to eat, I’ll help you! When are we going home, again?

Love these Girls!!

A Veteran’s Death

Recently, I’ve been thinking about the death of the aged. Not specifically my elders but simply the aged.

An old one I know, though not well, recently passed away. His last years were small, restricted. His hearing loss and surliness meant his final days, weeks, years were lonely. He has a family, and they did for him what they were able and more, but still, he lived a lonely existence. He may have preferred it, or regretted it, I don’t know, but I know it was so.

The last several months he lived in a VA nursing home. I will admit here, I may be the only one who thinks this, or it may make it easier for you to admit it, too, I was saddened by this. This somehow seems a last resort. “A nursing home is hard enough, but a nursing home with the VA? How sad!” I’ve thought differently since his death.

When I learned he was gone, I said a prayer of thanks for his release, and then wondered how he might have felt, had he still been around to witness what came next. You see, he was saluted. With respect and dignity and earnestness and pride. He was literally saluted.

It never occurred to me what might happen in a nursing home, populated by those who warrant veteran’s benefits, elders who served their country, willingly or under draft. Apparently, when one of their own passes, as their body is wheeled down the halls, draped in a flag, everything stops, and they salute. In whatever way they can, standing in their doorway, holding onto a walker, perhaps from the confines of a permanently seated position, they salute.

I think this lonely one I knew would have been so proud.

Bright Star

Tonight, I’m in the wrong city. Thousands of miles from where I am supposed to be! Tonight is opening night, and I’m supposed to be there, but instead, I am here. Snow and wind combined forces to produce a blizzard, and so, instead of flying, I sat. And drove home. And got up early. And sat some more. And finally cancelled my plans. But, as they say, the show must go on!

My sweet son will be attending opening night with a friend of his. A fellow graduate of the Master of Fine Arts program at Yale. They graduated last May. The show they will see, the after party they will attend, is the new musical by Steve Martin, called Bright Star.

Opening night is tonight at the Cort Theatre in NYC. Why is this show important? Because he worked on this show! He has been assisting Jane Greenwood, the Tony Award winning Costume Designer. The show opened in Washington D.C. at the Kennedy Center in December. My husband was able to attend that opening. And then the show moved to Broadway and I was to be my son’s date. I even went shopping!!!

I am so proud of what my son has accomplished in this first year, post-graduation. He now lives in New York City, in an apartment on the 24^th floor of a high rise, overlooking the city and just across the street from Central Park. He is free-lancing and has been continuously employed since graduation. I think that is just remarkable. Partly, OK maybe mostly, because I am a chicken and have no idea how someone goes about moving to a giant city and finding project work to support oneself, on an ongoing basis! But he is doing it, and doing it well.

Last week, I was a little melancholy about the prospect of going to this show with my son. I couldn’t help but wish that his sister was here to go with him, instead. She was SO proud of him and knew beyond doubt that he was meant to fly! She would have booked a flight as soon as she had the date, bought new shoes and reveled in his accomplishments.

Well, my son will have to settle for an Angel hug tonight, from his sister, and a heart that is broken but bursting with pride, from his Mom. I bought you something to commemorate tonight, Honey. A bright star. Can’t wait to give it to you!

ILYEM!!