Time Passages – Congratulations Ed & Kristen

Ed and Kristen sitting on the alter at there wedding ceremonyMy mom talked to their moms when they were both just tots. I’ve watched them grow up and then grow together. We share a genetic condition that identifies us, but doesn’t define us. They are a decade *cough* or two behind me.

We’ve been to many of the same events and share some fantastic memories. As they grew and matured, they became leaders in the albinism community. The people that parents sought out for information and reassurance. She’s an pediatric oncology nurse and he’s a tech guru with mad video skillz.

They met as teens. Her mom pulled me aside and asked what I knew “about this Ed kid”. I told her something to the effect of “relax, he’s good people.” Six years later when the finally “clicked”. He tried to introduce her to me. Like I hadn’t been following both of their trajectories for eons. Not meddling, but not really surprised when they became a couple either. I laugh and still bust him about it to this day.

The bride and groom entering the receptionI get a strange feeling when people who are on the periphery of my life comment or congratulate me on a life event. Though now that I’m the one watching time pass, I have a better understanding of why it happens. It’s a small sense of pride. Do not get me wrong, I am not trying to take credit for the awesome adults they are today, no that lies squarely with four parents who loved, challenged and set expectations. I was just part of the so-called village. I stood on the sidelines and cheered. Occasionally offered advice when it was requested (sometimes when it wasn’t). Mostly, I watched in awe as two kids grew and matured into two amazing, successful adults. Taking notes all the while so that my kids can benefit from their experiences. I hold them up to my kids as examples of what you can become with hard work and dedication.

I was truly honored to be invited to their wedding. The celebration of their marriage, the joining of two amazing human beings and two wonderful families. Congratulations Ed & Kristen. Thanks for letting me be part of your village and thanks for being part of the village that supports my kids.

eandk_group

 

Adventures in Chickening – Mites and that %#$#! bird

Overall, things are going well with our chickens. The eggs have been plentiful and yummy and on a day-to-day basis, they only require anywhere between 10-15 minutes of effort and their antics keep us laughing.

Occasionally, there’s a little more effort required. Such as cleaning out the coop every six months or so and other maintenance projects. Then there are those activities that fall under the category of “things, I never dreamed I’d do”.

The birds had red bums for a while and we just couldn’t figure out why. Becky another one of the chicken mom’s had the opportunity to pick the brain of an expert. She suggested patting them with tape. If there were flecks on the tape that looked like salt and pepper, the birds had lice & mites. Since the flecks were small, I let Becky handle the taping. Sure enough, the tape had salt & pepper. Oh joy. The same expert suggested dust baths in diatomaceous earth (a.k.a. DE). DE is a substance similar in consistency to powdered sugar, but much more bitter tasting. Go ahead, ask me how I know.

The Expert said she left DE out for her birds in a kiddie pool and her birds voluntarily hopped in and took dust baths in it. We filled a cheap kiddie pool with about an inch of DE and left it for the ladies to enjoy at their leisure. Yeah, um no. Our birds had ZERO interest in this fine dusty substance in the pale pink plastic thing. They avoided the pool like it was toxic waste. Ok then, onto plan B, mandatory dust baths for everyone.

dusting chickensWe collected the birds in the pen and I captured them one at time Becky stood by the pool of doom and scooped up handfuls of DE. I held tight to a squirming squawking fowl while she covered them. Then I let go and we ran like hell to avoid being totally covered in DE. Yeah, that worked, sometimes. I dressed for the occasion including old clothes, a scarf to cover my mouth, a hat and protective eyewear. Didn’t matter, I still had DE in every crack and crevasse. Let’s just say blowing my nose was interesting for the next few days and we’re running low on Q-Tips.

These are the times that I am SO glad we are raising these birds as part of a cooperative, because dusting birds is only funny when you are doing it with someone else. If it was just A-man & I, there would have been less laughter and more “what the hell were we thinking!?”. Not that Becky & I didn’t shriek that a lot, but it was definitely more along the vein of I Love Lucy adventure.

A week or so later, we involved our third Mother Hen, Jen and subjected the birds to yet ANOTHER dust bath. Oh the indignity I tell ya! This time they were wise to us, so they were a tad harder to catch. One in particular got her feathers REALLY ruffled and got away from me before my cohorts could get even a speck of DE on her. She also REFUSED to come back in that night when it was time to round up the flock. I think it took 3 separate trips to the coop to finally corral her. Her antics have continued on and off ever since. It’s been almost 3 weeks at this point.

At first we were in a bit of a tizzy because the dogs can’t go out until the birds go in.  So we’d make multiple trips over to the coop and enlist the assistance of anyone available. Finally, I just threw up my hands and said forget this sistah! You wanna stay out, stay out.

The funny part is that she paces around the outside of the run, but when you go to guide her in, not even pick her up, just guide her towards the door so you can let her in with out releasing the others, she freaks out. We’ve taken to referring to her as DB for Dumb Bird. I’ve also taken to letting the dogs out if the majority of the birds are in. We had a close call last week, but Fish was nearby and called Dory off. STILL the bird refused to be caught.

Later that night A-man went over to look for her.

Dumb bird

 

He found her. On TOP of the run.

She let him catch her and put her in. Yay!! She learned her lesson!

Meh, not so much, no, she’s been “out” two of the last three nights.

Dumb bird! I fully expect we’ll be down to 18 birds within the next few weeks. This sounds cold, and I assure you we continue to try and do what we can to coax this bird in as often as possible, but at the same time, she has to do her part.

It’s a good thing the eggs are so yummy 🙂

 

9

Dear Mim,

Mim in front of a forsythia plantAnd now you are nine. Wow, it was a great year for you. It was a year of learning and growing both physically and emotionally. Together we learned about engine speeds and we now have the words we need to talk about energy levels and how to manage them. You are working on strengthening your fine motor skills (writing) and your core strength and continue to improve. You are still the happiest kid I know. You meet the world with a big smile and a hearty laugh. You bring joy everywhere you go and frequently have memorable quips.

Sadly, you lost a grandmother this year. We weren’t able to ease you into exposure to the emotions and rituals of death like we were with Fish. Still, you handled it all like a champ. You had some questions, and tears, but mostly, you just went along with the flow and provided some bright spots in the bleakness.

You dabbled in Star Wars this year, but your interests moved to Hot Wheels and Battle Force Five (a.k.a. BF5). Not too long before she died, you were talking on the phone with Muzzie. She asked you about your interest in Star Wars and you replied “Actually, I’m more of a Hot Wheels kind of guy.” I could hear her laughing from across the room.

Mim jumping on a rockYou and your sister still get along. There is the expected grousing once in a while, but overall you’re good to each other. You share a game on the iPad called Virtual Families. You two have these in-depth conversations about who is sick, who needs more vitamins, who got a job, who is going to college and who died. They are very funny to listen to and occasionally very random. For example, “I accidentally sold the couch.”

You have very distinct ideas about how things should be done and who is responsible for what. Sometimes I wish you’d set those classifications aside and just do what needs to be done with out thought to whose turn it is, but hopefully that will come with time.

Mim and his karate instructor with Mim's Red/white/blue beltYou are now a green belt in karate and just celebrated two years of perfect attendance. You’ve signed up for six more months and I’m hopeful you continue beyond that. This summer promises to be an exciting one with stints at Cub Scout camp, Lego camp, and NOAH Camp and knowing you, LOTS of reading.

You are still my early bird although lately, you’re beside me with the iPad building your empire on Minecraft. I’ll take snuggles however they come.

You are a bundle of energy and life with you is never dull. Thanks for always being a ray of joy. Looking forward to all the coming year has in store for you.

Happy Birthday!

Love,

Mom

 

Ruth’s Brownies

Two of the best brownies on a plate next too a glass of milkEveryone has recipes that represent their childhood. My crispy baked pork chops are a riff on the Shake ’N Bake Pork chops I loved growing up. There’s also a baked chicken recipe that I’ll share soon, but the quintessential “treat” when I was growing up was my mom’s brownies. Everyone loved them! They are chocolately and moist and more a fudgier brownie as opposed to the more conventional cake brownie. As a matter of fact, in a classic case of only wanting what you didn’t have, I used to PLEAD with her to buy brownie mix in a box. I wanted the cake style brownie. Eventually, I had my fill of cake brownies and I wised up. I know this recipe by heart. It’s THAT good and THAT easy.

My mom got the recipe from her sister-in-law’s mother-in-law, who was also a close friend of my paternal grandmother. Did you follow that? That woman was also named Ruth. So, here you have, Ruth’s Brownies.

Ingredients:

  • 4 squares unsweetened chocolate (I use Baker’s)
  • 2 sticks of butter
  • 2 cups of sugar
  • 1 cup of flour
  • 4 eggs lightly beaten
  • 2 tsp vanilla extract (use the real stuff PLEASE)
  • 1 pinch of salt
  • 1 cup coarsely chopped walnuts (optional – I NEVER get to add walnuts because the people around me equate eating nuts to eating bugs. I think they add something, especially if you have a few minutes to toast them before adding them to the chocolate, but it’s up to you.).

 

Directions

  1. Preheat oven to 325 degrees
  2. Grease an 11×13 pan
  3. Place butter and chocolate in a pan on medium to low heat until both are completely melted.
  4. Add sugar, mix until blended
  5. Add flour, mix until blended
  6. Add eggs, mix until blended
  7. Add vanilla and salt, mix until blended.
  8. Add walnuts (if using).
  9. Pour into greased pan
  10. Bake for 30 minutes – NO MORE

As long as your oven is close to temperature you’ll be fine. When you pull them out, you’ll wonder if they are really done. The top should have a light crust, but still look a little moist.

Allow them time to cool before cutting.

Serve with milk.

The recipe can be halved, but really who would want to do that?

She didn’t call

My mother and I and my college graduation.My relationship with my mother has been tenuous at best over the last 20 years. In many ways because of the distance between us it doesn’t feel like I have the right to grieve and yet, I grieve anyway.

When she was alive there was a small sliver of hope that maybe she’d get better, become more emotionally balanced. With her death, that hope is snuffed out. I didn’t expect her to ever apologize for the crazy things she did (like not attending my wedding), but if she could have stepped away from the role of the victim … If she could have evaluated her life, reached out for help AND accepted it. If she could have stopped smoking, stopped drinking, stopped blaming everyone else for her problems. Hell if she could even have answered the phone more regularly that would have been an improvement.

None of this was EVER going to happen. But still with her death, now it’s NEVER going to happen. To me, that’s a powerful difference. In any specific situation, when hope is gone, all is truly lost

There are many great memories from my childhood and a few good moments in the last 20 years. I wish there could be more. She was a challenge for sure. I don’t miss the trips to Boston and the associated schedule juggling. I don’t miss being asked to advocate and then being told I was doing it wrong (even when she got the outcome she was looking for). I don’t miss the drama, but the fact that I’ll never hear her voice again gets me every time. Yesterday was my birthday. She always called and usually sent a card. Yesterday was the first time in 45 years I didn’t hear her voice on my birthday. It was an unexpected blow.

The last words I said were “Love you.” and I meant them even if they were tinged with a hint of frustration and exhaustion. There were still more words to say. We ended on a good note, but neither of us really thought that would be the last time we’d speak.

Despite all the anger and frustration, I did love her. I think I’d convinced myself I didn’t in the last few years. These last few weeks have convinced me otherwise. There is no one who loved me more. That all consuming love was in many ways her Achilles heel but I was the beneficiary and I feel the loss far more than I expected to.

Regrets are wasted time. This is especially true in this situation, because there is no way to go back and change things, The truth is I don’t think I would even if I could. The changes weren’t mine to make. I tried to help her. So many people tried, family, friends, medical professionals. Eventually, they all came to the same conclusion: She wasn’t able to accept help. Still, that’s not a tremendous amount of comfort. I have this unrealistic belief that I can move mountains if I try hard enough. It’s helpful in some situations, but in others, it is a devastating shock when I can’t actually move the mountain. I do take comfort in the fact, that I gave her my all, it just wasn’t enough. To save her, I would have had to sacrifice myself and I know that wasn’t want she really wanted. I just wish the mother I had in the second half of my life could have been the mother I had in the first half of my life.

The only thing I can do now is be patient with myself and make sure history doesn’t repeat itself with my kids.

kidznmeyorkmaine

Meet Quin

In all the chaos that was April, I’ve forgotten to introduce you to our newest family member. Interwebz, meet Quin.

a black 2012 Chevy Equinox

She’s a 2012 Chevy Equinox.

So, what happened to Lexi you ask? You aren’t alone in your curiosity. Lexi just wasn’t happy with us anymore. She was a little spoiled by the mild winter and mud season we had last year. This year’s heavier snow falls and the resulting messier mud season were overwhelming for her. Don’t get me wrong, she was a trooper, and she was holding up fine, she still had a lot of value left in her, but I was worried about her long-term health and well being. She was almost 4 years old and already starting to show signs of the strain. She was running fine, but she just wasn’t cut out for a long life on a dirt road. It’s a minimum one mile drive to reach the pavement and certain times of the year, that 1 mile can be the hardest part of the trip. Truth be told, a lot of the pavement round these parts ain’t all that great either *cough* Concord secondary roads *cough*. The biggest issue was the ground clearance. Poor Lexi was only four inches off the ground. Hell, we regularly have ruts deeper than that! I was afraid that she just wouldn’t have the longevity that Emmy, my Honda CRV had. We had Emmy for 8 years and almost 170,000 miles.

When I really evaluated what our requirements were, it became clear that Lexi was really more car than we needed. In the 21 months we had her, we used the seating for 7 maybe four or five times. That’s a lot of extra car to be hauling around for such a rare occurrence. I scoured Consumer Reports looking for smaller, all-wheel-drive vehicles that had above average ratings for gas mileage, long-term reliability, and safety.

In one afternoon, we sat in or drove the Nissan Rogue, the Ford Escape, and Toyota Venzia. The Rogue was tight and visibility out of the rear window was virtually nonexistent. I liked the 2012 Ford Escape, it reminded me a lot of my CR-V, but it was redesigned for 2013 and again the rear visibility was atrocious. I liked the Venzia, but it was big and really more than I needed.

The next time out, my husband convinced me to look at the Equinox. He’s a Chevy guy, I’m not as devoted to the brand. But, CR liked the car, so I agreed to take it for a drive. Later that day, I drove the Subaru Forrester and the Subaru Outback. I lasted five minutes in the Forrester. It has awesome visibility, but I really felt like I was in a tin can. The Outback was ok, but I didn’t like it as much as the Equinox. I considered my old flame the Honda CRV, online, but in the redesigns since I’ve had one raised questions about the rear visibility and I had other concerns including gas mileage.

The Equinox handled well, it had decent cargo space but the clincher was estimated MPG. Chevy is advertising 30 MPG, Consumer Reports says it’s closer to 26MPG, either way, that’s higher than the 19 I was getting in the Flex.

It’s worth noting that the Equinox comes equipped with a 4 cylinder or 6 cylinder engine. The gas mileage on the six isn’t as good and I found since it was significantly smaller than the Flex, it is still well powered with the four cylinder engine. She definitely gets out of her own way even loaded with four people and the AC on.

We had decent luck buying Lexi used, so I was on the lookout for a 2012, with low mileage and a few bells and whistles I wouldn’t have been to able afford otherwise. I was excited, our local dealer had a few that met my criteria.

I crunched the numbers and went in armed with data and the knowledge that it was the end of March. Not only is that the end of the month, but it’s the end of the sale’s quarter. I had a number in mind, if they hit it, they’d have a sale, if they didn’t I still had a car I liked and I had seven months before the next winter road conditions to find a car I wanted.

They met my number. I’ve had it six weeks and I’ve already put about 2000 miles on it. I’ve noticed the decrease in cargo space once or twice, but it’s not a show stopper. It just means I have to put the seats down more than I did in the Flex and that is a very easy fix. It is literally the flip of a switch to release the seats.

Quin got OnStar, remote start and Sirrius/XM and heated front seats (standard on the LT2 trim package). I’m only seeing 23 MPG, but honestly, I haven’t had a chance to read the manuel and play with the settings to see if there’s something I should be doing to increase the mileage.

She had the chance to experience the end of mud season and that extra inch and a half of clearance has made a difference. Quin just seems more at home on the dirt roads. I hope Lexi finds a family who lives on a paved road who will love her as much as we did.

What’s with the name you ask?

Have You Had The Talk?

'48Sheet billboard art project - Birmingham - High Street Deritend - Digbeth - My last will and testament' photo (c) 2012, Elliott Brown - license: http://creativecommons.org/licenses/by-nd/2.0/ Have you had The Talk? While I may have a newly minted teenager, I’m not talking about the birds & the bees here. Have you talked to those you love about their end of life wishes?

I have and on April 3rd, I was REALLY glad I had. I got a call at 8pm from a doctor notifying me my mother was in a crisis situation and asking what my mother’s wishes were for end of life care. I knew, but still had trouble converting that knowledge to words. With a little prompting, I recovered and shared her wishes with the medical team treating her.

In the aftermath of her death, so many people I’ve spoken to, have not had “the talk” with their spouse, their parents, their children. If you haven’t been asked, don’t assume people know what you want. Take the time and write up your wishes. Hell, why not take the extra step and complete a healthcare proxy, AND a living will (some states recognize one, some states recognize the other, it’s best to have both).

Do you have strong feelings about what happens to your body after your death? Do you want a religious funeral? A memorial service? Burial at sea or will you donate your body to science? The truth of the matter here is that you’ll be gone. You won’t have an actual say in what happens, but if you feel strongly, document your wishes and hopefully your loved ones will abide by them as much as they can.

You have a will right? RIGHT???? Yes? Good for you! Do the people closest to you know where to get a copy? Does it need to be updated? Hint if your will talks about custody of your children and the children are buying their first homes, it’s time for an update.

Wait, you don’t have a will? GET ONE NOW!! This isn’t about you. This is about easing the burden on the ones you leave behind. A loved one dying is a stressful situation. A will spells out what should happen to your assets and wordly belongings. If you are really feeling responsible (and I sincerely hope that you are), contact a lawyer and set up trusts that may ease the financial burden on your loved ones.

Speaking of finances, dying ain’t cheap. Depending on where you are in the country and what specifics you choose, cremation can start at $3,500. A full blown burial including a casket etc. can start at $10,000 and go up from there. Got life insurance?

I’m not a lawyer or a financial expert, but I’ve seen it where the estate is settled with relative ease and the family can focus on grieving the loss of a loved one and I’ve seen it when the lack of documentation nearly caused financial ruin for those left behind. Don’t be the jerk that leaves behind a mess. Get your house in order. Losing you will be hard enough for your family and friends. Don’t make it worse.

The Story of Her Death

I’m a writer. I write for many reasons. I write for me, to organize my thoughts. I write to clear my head. I write to document things for other people. I write to share what I’ve learned so someone else can avoid my mistakes or benefit from my knowledge. I think this piece is a little of all of that.

Just as there are birth stories, there are also death stories. Some people are terrified of death. I’m not. I do not have a death wish, I hope I have many great years ahead of me, but at the same time, no one gets out of this life alive. What will be, will be. I will say that prior to my mother’s death, I had no idea what happened once the heart stopped beating, what the process was to get from hospital to funeral home. Now, I know and I’m brewing another post on that topic too.

The Call, Think Fast

My mother entered the hospital for treatment of an infection on her foot. It had gotten so bad, she needed IV antibiotics. She was only scheduled to be there for a day or two and would then be transferred to a rehab center to complete the healing process. However, while she was there, another problem was discovered and a minor surgical procedure was scheduled to address that issue. This was only supposed to extend her stay in the hospital by a few days.

She went in on a Monday. I spoke to her that night and again Tuesday night. Wednesdays are consistently the worst day of my week. I start at 6am and go go go until about 8pm. I had tried to reach my mom throughout the day, but was unsuccessful. When we got home from karate, I was starving, so the plan was to have a yogurt and then try again. If I didn’t reach her, I would then call the nurses station for an update.

Halfway through my yogurt, the phone rang with the hospital’s name on the caller ID. That’s rarely a good sign. What followed was a brief back and forth with the doctor. He said they were having a hard time getting a blood pressure reading on her. I was annoyed. Look at her chart doofus. She is notorious for having crazy low blood pressure. He calmly continued to try to convince that this wasn’t normal and I continued to tell him it was. Finally he changed tactics. “Ma’am. She has no pulse.” Oh, ok, this is DEFINITELY not normal. “The team needs to know your wishes regarding end of life care.”

 

ALL STOP. OH SHIT!

 

I stuttered as my brain tried to wrap itself around what he was saying. My mother was dying, if not already dead. My mother and I talked about this. We had had this conversation. I knew what she wanted, but my brain just refused to forward the information to my mouth. I ran upstairs and grabbed the file folder with her name on it. I opened it and as soon as I saw words on paper, the words came.

She did not want to be a vegetable. She did not want to be kept alive for the sake of being kept alive. I shared that with the doctor and he asked me to stay near a phone. I was scrambling to make plans to get on the road. The hospital was an hour an a half drive from my home. I gave him my cell phone number and told him to keep me apprised.

My husband was Northbound on a bus from Boston. I scrambled to find someone to stay with my kids. I have left them alone before, but I couldn’t do it this time. Here’s where I stop and count my blessings that we live where we do. My in-laws are next door and we have fabulous neighbors across the street.

The doctor called back. They’d been doing chest compressions for 15 minutes with no response. The team was concerned about the lack of oxygen to the brain. I sat down and took a second to gather my thoughts.

 

“Let her go.”

 

Her health had not been good. I was starting to question her ability to live independently. Living with me was not an option and the idea of moving to an independent living facility or a nursing home was in her words, “a fate worse than death.”

I called my husband and told him. I called my aunt, her only living sibling, and told her my mother had died. Half way through that call, the doctor called back to say they had a pulse. Of course they did. This was my mother. She could be as stubborn as a brick wall.

I passed on the updated information and once again scrambled to make plans to get to Boston only this time, I wasn’t driving. My in-laws would stay with the kids, my neighbor would drive. My husband was too far away. Only he wasn’t. He’d misjudged where he was (the highway all looks the same at night). My neighbor drove me to him and he and I headed South.

While en route, my mother’s heart stopped again. Again, I gave the approval to let her go. Again, she revived. At this point I was invested in getting there to say goodbye in person, but I told the team that if she crashed again not to resuscitate her. In the meantime, I further rallied the troops, I called my dear friend Melissa who is also a nurse and my cousin. They lived closer than I. Whether she would consciously recognize it or not, I didn’t want her to be alone. My cousin made it about half an hour before I did. Melissa made it 5 minutes after me and my friend Charlene stood at the ready.

The Hospital

As we approached the hospital. My husband had the foresight to warn me that the scene I would enter would be unexpected. He told me there would be tubes and wires and blood and that her body would be swollen with fluid. Upon arrival at her bedside, I was glad he’d warned me. It was an unnerving sight to say the least.

I said my goodbye and I stepped out. How she looked, the beeps and the alarms. It was too much. I gave the approval to stop the medication that was inflating her blood pressure to keep her alive and headed to the family lounge. With the support of my husband and Melissa I gathered my wits. In the meantime different members of the medical team that had been working with her stopped in to offer their sympathies. One had talked to her several times throughout the day and said she was in good spirits. I knew she was optimistic about the outcome of the procedure it helped to know she was in a good mood.

Eventually I was drawn back to her bedside. They had drained off some of the fluid and put blankets over the blood stains. She looked more like herself. I held her hand, her nails, although unpainted, were perfectly shaped. That was my mother.

The four of us stood around and talked. We talked about current family news (my cousin’s daughter is getting married this summer). We talked about my mom, past and present. I knew. I just knew that she was already gone. Melissa helped me ask the team to make her passing as easy as possible from this point on.

They removed the breathing tube (I stepped out for that procedure) and turned off the alarms. We held her hands, told stories and cracked jokes. As I told the nurse who frequently came to check on us. I’m Irish, we laugh to avoid crying. Eventually, she took her last breath and she was really gone.

Thanks MGH

Here I need to stop and give props to Massachusetts General Hospital. MGH is a large teaching hospital with an excellent reputation and a long and storied history. That type of environment sometimes takes a bad wrap for being out of touch or impersonal. The team that worked with my mother and I, was awesome. They kept me in the loop. They were sincere. It was clear this was an unexpected outcome and they were all rattled by it. I got the sense that they deal with death everyday so they knew the steps that had to be taken, but at the same time, they understood that this death was personal to me and guided me gently through the process. I will be forever grateful for their patience and kindness.

After she died, the doctor came in and verified that she was indeed dead. Then came a series of questions.

Did I want an autopsy?

I hedged. It wasn’t that I didn’t want her cut open. It’s just that while sudden, her death was not completely unexpected. She’d been in failing health for a while. Did the team want an autopsy? We danced around this for minute or two until A-Man and Melissa pointed out that the team couldn’t legally have a say in the matter. I had to give a yes or no answer. Yes.

Did I want her to be an organ donor?

She was a 3 time cancer survivor including radiation treatments and at least 2 rounds of chemotherapy, sadly, that made her ineligible to donate.

Did I want a full autopsy or did I want to limit the scope to the procedure most recently performed?

Would the information gleaned from a full autopsy be used for teaching purposes?

Yes

Then I want a full autopsy.

The would remove her organs for examination during the autopsy. Did I want them return to the body? If not, the organs would be used for teaching purposes.

No, use them for teaching purposes.

Did I want a copy of the autopsy report?

Yes. (So I can forward it to Melissa for translation).

A few signatures, they gave me her belongings and we were free to go. For

I texted Charlene. She’s gone. Only, in my one handed haste I texted, She’s gine, which autocorrect changed to She’s fine. Now in the wee hours of the morning after such a roller coaster of adrenaline, this made me laugh out loud. She was definitely NOT fine. As I write this, I think maybe she was fine. Maybe at last, she wasn’t in pain and she’d found peace. I’ve decided to go with that.

We spent the night at Charlene’s house. She and her family live outside of Boston. Both A-Man & I were pushing exhaustion, the drive home seemed too much. Plus, I wanted to go to my mother’s apartment the next morning and pick up a few items.

The Analysis

It was weird drinking tea with my friend thinking, My mother is dead. I knew this would happen sooner rather than later, but it still took some processing to really comprehend. Even now, more than a month later, I occasionally come up short and think, she’s dead.

In some ways, I’ve been grieving the loss of the mother I grew up with for more than 20 years. Recently, our relationship roles had reversed and frequently it was one of obligation on my part. Although charming to many she came in contact with, to those few in her inner circle, she could be a difficult person to deal with. She made poor choices and then lamented how the world was out to get her.

I’m sure my feelings will change over time, but right now, it just feels like a finger after a deeply embedded splinter has been removed, extremely sore, but slightly less painful. I hear ads for services like A Place for Mom. And I think wow, I won’t have to deal with that now. I really didn’t know what the next step was for her. She was not going to willingly stop living on her own. It was going to take a catastrophic event or legal action. I wasn’t looking forward to either.

Still, I’m not sure the full impact has hit me. She was notorious for disappearing for weeks on end. She rarely left her apartment, but she wouldn’t answer her phone and she didn’t return messages. Doctors and caregivers would call me with appointment confirmations or test results because they’d lever numerous messages and hadn’t heard from her.

Once, I had to go so far as to have the manager of the building do a well-check. She was furious with me for the invasion of her privacy, but, she got the message and took me seriously in the future when I left messages that said “You have 24 hours to call me back”. It had gotten to the point where I would regularly put out the call to her case manager and family to see if ANYONE had heard from her.

In some ways these days feel like those times when she was just incommunicado, but at the same time, they don’t. Part of me knows this is permanent. We’ve emptied her apartment and are starting to file paperwork. The other day, the kids asked me what time of day I was born. I think it was dinner time, but I’m not sure and I can’t call my mom and ask her.

For the most part life has gotten back to normal. I am beyond profoundly grateful for all those who have reached out and keep checking on me. The cards, the meals, the texts, and virtual hugs meant everything as I struggled to keep it together. I am truly blessed with an amazing village of friends.

This brain dump was primarily for me, but if you’ve gotten this far, thanks for reading. Go hug someone you love.

Muzzie

I am beyond thrilled to say “Goodbye and Good Riddance!” to April 2013. While the month started off joyfully as we celebrated my daughter’s entrance in to the teenage years. On April 3rd, it took a dark turn when my mother passed away. Her death was sudden, but not entirely unexpected. She had not been in good health for a long time. Then came the Boston Marathon bombings and subsequent pursuit of the suspects. The service was being held in West Roxbury, a part of Boston. The lockdown came dangerously close to delaying my mother’s memorial.  Plus, I lived in and around Boston for seventeen years and still have very strong ties to the city. To say the least I was a little rattled.  And, in a case of monumentally bad timing, my husband had an unusually high, (for him), number of travel days this month. So yeah, April sucked. I’m looking forward to better days.

This are the words I shared at my mom’s memorial service.

RuthRyan

On behalf of My Aunt Joanne and our families, thank you all for coming to remember my mom. This morning I will share some memories and music to pay tribute to my mom, we’ll welcome Fr. Richard Bradford from St. Theresa’s to share some words of faith, then I will invite anyone who wants to share a story or remembrance of my mother, to do so.

While meandering through this process, I learned a few things. Let me start by sharing them. First, there are over 1500 versions of Amazing Grace on iTunes. Second, the Philadelphia Police and Fire Pipes and Drums Corps have a CD entitled Guns and Hoses.

It’s no secret that towards the end of her life, my mother had a lot of challenges and some of you only ever knew the woman who chose to isolate herself and battled a host of demons, but there was so much more to my mother than that woman.

My mother was an artist by vocation and a teacher by training. She had incredible artistic talent that informed everything she did. She was known far and wide as the woman with the beautiful hand writing.

She may have lived outside of Philadelphia for 20 some odd years, but she was a New Englander through and through.  Fried clams and lobster were her favorites. She grew up here in West Roxbury surrounded by friends and family and recounted fondly her time at Notre Dame Academy and Boston College.  She would rather have gone to art school, but pragmatic Irish parents who had lived through the Great Depression convinced her to pursue a degree in elementary education at BC. Despite not being her first choice of career paths, she enjoyed teaching and she was good at it.

She met my dad in New York and they married just down the street at St. Theresa’s in what looks to be a beautiful wedding Alas, their marriage was not meant to last.*

When the doctor diagnosed me with albinism. He told my mom I’d be blind and possibly deaf and mentally impaired.  He said not to expect a lot from me, that I probably wouldn’t graduate from high school.

Thankfully, she didn’t believe him. She ignored the doctors directive and treated me like a “normal” child only with lots of hats and longer sleeves. She never said “You can’t do that.” Well not until I got to my teens and we were talking about how I couldn’t stay out until all hours of the night.  Instead, she recognized that she didn’t understand how I saw, so she encouraged me to find my own limits, to find my strengths and never use my albinism as a crutch. She educated herself and by her own admission made it up as she went along.   She taught me the meaning of the word perseverance. She advocated for me fearlessly and passed those skills on to me.  She was always my biggest supporter. My growing to be a successful independent adult was her goal in life.

Along the way she brought Dennis into our lives. A man she loved deeply and who stepped up to be a father figure for me.

She let me know know that emotions are something that everyone feels and it’s ok to be angry, but what matters is what you do with that anger.

She taught me that EVERYONE deserved a smile and respect and that making friends with the secretaries and the custodians was the key to success in this world.

When I was growing up we had awesome parties at our house. There was music and laughter and lots of food. She was the consummate hostess and fussed about every detail, insisting the drapes NEEDED to be vacuumed and that the yes crystal bowl was necessary for the shrimp shells. Her perfectionism was a double-edged sword throughout her life.

She taught me how to drink responsibly. She even taught me how to grieve.

She’s been described by many as elegant.  She cared about her appearance looked like she stepped out of a fashion magazine, even in the lean times.

I still remember the look of horror on her face when I announced at 11, that like the Neil Diamond song, I too would be “forever in Blue jeans”. She was cursed with a daughter who’s idea of a designer label is L.L. Bean.

I have lots of fun memories including the surprise party she threw for my sweet 16. Or the time she inadvertently baked her purse while making her world famous brownies.

I always knew she had my back. When my seventh grade math teacher insisted that despite what it said in my IEP, he didn’t NEED to enlarge my test because he saw me reading paperback books in the cafeteria. I knew this was a battle best handled by mama bear. The next day I had an apology and the opportunity to retake the test in large print.

When I was in 8th grade, I had to write a report for my health class. Naturally, I chose albinism as my topic. While helping me hunt for sources, written in English as opposed to medicalese, she found a woman with albinism who worked in Philadelphia.  A meeting was arranged. It was the first time I met someone who looked like me. The meeting was life changing for both of my mother and I. Not long after that, my mom and Dennis helped to plan a one day conference for people with albinism. She even managed to get the preeminent authority on albinism Dr. Carl  Witkop to come and speak (on his own dime). The night before the conference, at dinner, Dr. Witkop strongly encouraged us to form a national non-profit to provide information and support for people with albinism. I thought this was a wonderful idea. Eventually, the other 5 adults at the table agreed and NOAH, the National Organization for Albinism and Hypopigmentation was born. She stayed up all night creating a membership form. Going forward, she and Dennis wrote the newsletters and she spent hours on the phone counseling parents who had just received the diagnosis.  NOAH is almost 31 years old this year with a solid membership base and strong web presence. There is enough work to support a part-time executive director and full time administrative coordinator.  Accurate information about albinism is literally available in the blink of an eye. I know she still cared about NOAH and albinism advocacy because when I cleaned out her apartment I found a stack of NOAH’s Albinism info business cards and Albinism Insight, the quarterly magazine.

When I was in high school I had a very full extra curricular schedule to put it mildly.  Dinner was a necessity, but time was a luxury, so occasionally, we’d have 7-11 picnics: 2 hot dogs, a bag of chips and a soda. Healthy? No, but it filled the hole and what mattered was that we ate together.

She was my own personal clipping service sending me articles and tell me of TV shows she thought I’d be interested in. I found a folder of recent clips her apartment.

Once she sent me back to college with a banana bread she made and froze. One morning a day or two after my return my roommate and I woke up to an AWFUL oder. In our sleep addled stupor, we stumbled around our small dorm room like pinballs trying to find the source of the stench.  My roommate eventually held up the tin foil wrapped loaf.  When we unwrapped it, we discovered meatloaf instead of banana bread. From then on, she was known as Meatloaf Mom.

She devoted her life to raising me to be an independent, self sufficient adult. When that happened, she had little to fall back on. As I set about writing this, there are large gaps, time when I have no stories. The distance was too great. It makes me sad but I can’t say I have regrets about my own choices.

I know without a doubt, that she loved me and was proud of me. She was thrilled to be a grandmother and deeply enamored of my children.

Her own choices greatly limited her ability to participate fully in life but I don’t want to dwell on that here.

Instead, I want to ask you all to learn from her mistakes. Pride and independence will take you far in this world, but sometimes we all need a little help and it is ok to ask. That’s what friends and family are for. Clean underwear is important, but not having any at the ready should never be a reason to avoid going to the hospital. I also have it on good authority, that ER docs are not checking out whether your hair is done or you are wearing make up when they are evaluating you for a gall bladder attack, just sayin’.

Despite her quirks, she was my mother and she literally gave her all to insure that I could live a good life. Complaining about the outcome feels a tad like biting the hand that fed me.  I only wish she could have applied the same caring and kindness to herself that she gave so freely to others.

Rest in peace Muzzie.

We Only Live Once in a While (I had a better version of this song, but it’s not available online).

When I Grow to Old to Dream – Linda Ronstadt


*My parents went their very separate ways, but recently they had kept tabs on each other through me. My father sent a lovely bouquet of flowers for my mother’s memorial service. 

 

 

 

13

Dear Fish,

You are now, officially, 13 years old. Well then, we have a teenager!

I’m not going to cry.

Ok, maybe a little.

Fish 13-1

Part of me wants to live in denial because, how can MY baby be 13 already? That makes me… Well, let’s just say that makes me older than 13 and leave it at that. Most of me is excited. As much as I tease you, I know there is really is no stopping this process and I wouldn’t want to anyway. You are growing into a most wonderful human bean. The kind of human bean who makes me laugh and think and keeps me on my toes.

You are now a third degree brown belt in karate and you have moved up to the Junior classes. You are most definitely holding your own with your peers as well as your older classmates. Several of your instructors have commented on the ease with which you have risen to the new challenges. You were recently invited to join the STORM (Special Team of Role Models) program where you have begun weapons training with a bow staff. You’ve accomplished all of that in just under a year and a half of studying karate. GO GIRL!!

Fish 13-2

After three years in pain, you were diagnosed with food sensitivities earlier this year. The diagnosis drastically changed what you are able eat. It hasn’t been “fun”, but you’ve taken these changes in stride, trying all kinds of new foods and generally trying to make the best of it. You are slowly returning to cooking for yourself and for others. You still make a gawd-awful mess in the kitchen and your Dad and I continue to educate you on the fine are of cleaning up after yourself.

You continue to thrive in middle school. You have encountered the social challenges that are so much a part of being in middle school and worked hard to learn from the situations. You are getting better at using the tools necessary to your success as a person with a visual impairment, but thankfully you refuse to let you condition hold you back from the things you want to do.

Fish 13-3

You enjoy family time, sometimes. But, as expected, you spend many hours behind closed doors. You’d never tell him, but you love your brother ferociously despite the fact that he can drive you bananas. It’s my understanding that is part of his job description.

You are in that awkward stage where you are too old for little kid games, but the little kids still consider you one of them. This raises a challenge when you are “in-charge” but everyone is adapting. You are anxious to be part of the grown-up world, but not quite ready for all that entails and frankly, the grown-ups aren’t quite ready for you to be a grown up yet either :). It doesn’t mean we don’t think you can handle it, it means we want you to enjoy childhood for as long as you can. There is no magic in being a grown-up. It appears cool because we are able to do things and make decisions that you would like to, but with those activities and decisions comes responsibilities that can be overwhelming. You are incredibly responsible for your age and for that I am grateful. Just remember, it’s our job to guide you through the process of learning to balance the privileges and the responsibilities so you grow into a self-sufficient human being. Be patient, and enjoy your unencumbered life while you can.

Fish 13-4

You are endlessly curious and as a result, very knowledgeable about many things. If you want to know something you’ll work to find the answer. If you find it, you’ll share the results. If you don’t you’ll search out someone who can give you the information you need.

I love your giggly, kissy side. I love that we share similar tastes in music. You listen to and, appreciate some of mine and I like some of yours. I never would have expected to add pop stations to my favorites in the car, but I have. Sometimes the the lyrics make me cringe, but often, they launch important conversations about, sex, drugs, alcohol, choices and self respect.

Fish 13-5

I enjoy the time that we get to spend together just you and I. I am grateful that you trust your thoughts to me. I hope that will continue. I try to answer you questions as honestly as I can even if I know the answer I have isn’t always the answer you want. Life is hard like that. Part of me wants to make it easy for you, but most of me knows that’s not the best path. I’m not perfect, but truthfully, I’m not aiming for perfect. I’m aiming for honest and real. It’s taken me a long time to realize that there is no such thing as perfection. I’ve learned that what matters is giving your best and respecting that we all have limits. I will always encourage you to go above and beyond, but learning to say “I’ve done my best and can’t do anymore” is as valuable as persistence.

Fish 13-6

Our mother/daughter relationship isn’t without it’s challenges, we are after all, both human but I think we’ve done a pretty good job so far of saying “I’m sorry” and “I was wrong.” when the situation warrants.

A teenager, wow! I’m so excited to see what is in store for you. You are exploring who you are and figuring out who you want to be and it is fun to watch and support you as you work it out.

Love you Fish. Happy Birthday.

Mom