That's no Revelation!

It's no revelation that Margret had extremely good care and good medical support in the years after her diagnosis with pulmonary hypertension.

There's a new doctor in my family group, and I met her on Thursday. After we discussed my knee, and what to do about it (an x-ray which showed nothing amiss and a visit to the orthopedic doc next week) I said, "it's a shame you didn't get to meet my daughter Margret." She said, "I'll get to see her next time," and I had to stop her and explain that Margret died last year. Then I explained about the heart defect, and the pulmonary hypertension.

What put me in such a mood that I had to mention Margret? I was sitting in the Mom chair, gazing out the window over the exam table where Margret would sit, and thinking how she sat there every three months, waiting to see her doctor, chattering about something fun, and expecting a good report. I thought about the times she sat there feeling less than perfectly well, and how she sometimes thought I was overcautious. It made me sad to think we'll never be doing either again.

On my way out, I stopped at the nurses' station to get my ortho appointment, and the lady helping me was the same one (named after a lovely purple flower - I shall call her P, for Petunia, which isn't her flower but does come in a lovely purple) who handles referrals. I thanked her for the extra miles she'd gone to make sure Margret had all her referrals when she needed them, and for the time she'd sent one that vanished, and had to be sent again on the instant while we were waiting in that particular doctor's office to be seen.

"That's what we're here for," she said, and she remembered the mysterious vanishing referral. "I still have no idea where it went."

We chatted about Margret, and another doctor dropping papers off at the station said, "You're talking about Margret, aren't you? Everybody loved Margret."

I told him I very much appreciated the uniformly good care Margret got from the group.

He asked how old she was when she died; he said thirty seven was a very good age for someone with her unrepaired heart defect. He said, "she had very good care, and not just here."

The new doctor stepping up with her next paperwork heard, and added that she had cared for a number of patients with similar problems who had died in their late twenties; that Margret had done very well.

Margret had the best care that I could arrange, balanced with something like a normal life. Perhaps she would not have caught that awful bug if I had kept her in a bubble, kept her away from other people, kept her out of places with sniffling, sneezing human beings, but what fun would that have been? Margret lived for interaction with her friends. She loved to meet new people. She loved eating out, and she loved when we traveled.

A lot of things come down to luck, I suppose, and that bug she caught was one of them. Her good care was not luck, neither was how much she was loved. That was us loving her back for how loving she was. That was us doing our best to see that she had a long and happy life.

You did a great job, kiddo.

My Mom and Me

My Mom and I have been at odds over something or other most of my life. It seemed to me that I could never do anything right. Or not right enough for her. No gift I gave her as an adult suited her, either, it seems, (she often gave them back telling me she didn't want them, maybe she just meant she had no use for them? or place to display them?) but when we were clearing out her house so it could be sold, we discovered a collection of the things I made for her in kindergarden and the early grades.

I've heard it suggested that we butted heads so often because we are very much alike. I don't know if that's true. I'd rather it weren't, thank you very much. I do not want to make my daughters feel the way she made me feel.

I'm sure she loved me. She read to me when I was sick, she came to the hospital and stayed at my side when I had my tonsils out. When I was in kindergarden, we were supposed to tell our parents that we could come in costume for Halloween. I forgot. Mom walked me to school, and when I saw all the costumed kids, I refused to go in. She asked what the matter was. I must have explained, because we walked back home, cobbled together a costume from a kitchen apron and the headpiece with bunny ears from another costume, and I went as Mrs. Rabbit, Peter Cottontail's mother.

I was a disappointment to her in many ways. I was only one child, when she wanted a gaggle of younglings at her feet. As I grew up, I turned into someone who wasn't the daughter she wanted. I didn't follow her plan of college, graduate school, a career in science, and then a family. I rebelled. I fell in love with the guy who sat down next to me in Latin class, and told such interesting stories. I married him and dropped out of college. We had kids together. He left me. I have to hand it to Mom that she never said, "I told you so," when I called to let her know he was gone.

As adults, we got along better living far apart. Any time my parents visited for more than three days, my Dad had to referee. I remember one visit when, after my parents left, I couldn't find the can opener. My daughters told me Mom had found it where I kept it, and muttered that it didn't belong there, it belonged in the OTHER drawer, and they watched while she rearranged a variety of things in my kitchen to suit herself.

Margret Would Love this Article

Margret would have smiled, chirped with glee, bounced and clapped her hands to have this article read to her.

She had a boyfriend or three, but her relationships never reached the point of seriously contemplating marriage. Contemplating marriage was something she did on a regular basis, though, even marriage with guys she had only seen walking down the street, or heard about from some friend. It's the seriously part that didn't happen.

Thanks to Jess on Raising Joey for this link:

http://www.mlive.com/news/citpat/index.ssf?/base/news-28/1240740321256200.xml&coll=3

Sunday, April 26, 2009
By Monetta Harr, For the Citizen Patriot

A school-age snapshot of Alex and Alexis sharing a hug clearly shows the affection between the two when they were classmates at Columbia’s Miller Elementary School.

Flash forward to high school. Alex’s family had moved to the Napoleon school district, and the friends lost contact until his photo appeared with a Citizen Patriot story about him serving as manager of the boys basketball team.

Alexis’ mother saw it and suggested her daughter give him a call and invite him to prom.

Today they celebrate their first wedding anniversary. It is a love story made even more so because the couple have Down syndrome.

“I can’t even put into words how wonderful that feels, that Alexis found someone to love and be happy with. It’s what every parent wants for their child, and it’s wonderful,” said Laura Smith of Clark Lake, Alexis’ mother.

On April 26, 2008, Alex DeNato, 27, and Alexis Smith, 25, were married in Queen of the Miraculous Medal Catholic Church, vowing to love one another as husband and wife.

They have a two-bedroom apartment in Alpine Lake Apartments, chosen because it is on the Jackson Transit System line and they use its Reserve-A-Ride service to get to work.

Alex washes dishes and peels potatoes at the Napoleon Café, and Alexis bags groceries at Polly’s Country Market in Brooklyn. They walk to Citizens Bank on Fourth Street and often walk to visit his parents, Mark and Chris DeNato, in Summit Township.

Alexis handles their money and checkbook, and Mark DeNato tracks it online, but rarely does Alexis make a mistake.

Laura Smith drives them to Polly’s Country Market at Ferguson Corners one weeknight each week.

“I usually sit in the car and talk to my sister,” said Smith, an X-ray technologist at Columbia Medical Center in Brooklyn. “They do their own shopping, have a list, and they don’t need me.”

I Still Miss You, Margret

One year ago today, we said goodbye to Margret, and let her go home.

She was ready to go.

Wouldn't it be lovely if she could write from where she is, and tell me she's happy, healthy and has plenty of interesting things to do?

Wednesday was Margret's Birthday

We celebrated.

We went out for dinner, and had cheesecake for dessert. Margret liked cheese cake a LOT.

Then we had a fire to sit around. When it was going nicely we put gifts for Margret on it. The gifts are symbolic - empty boxes wrapped as gifts.

We thought of all the wonderful things Margret did in her life, and told each other stories.

Celebrating her birthday without her hurts, but it hurts less than not celebrating her birthday at all.

High School Graduate

When Margret was in High School, and getting ready to graduate, her teacher suggested she compose a speech for the commencement ceremony. She asked me to write the speech for her; I refused and had a little chat with her teacher. So, she and her teacher worked on the speech together. I asked how the speech was coming. She told me "It's a surprise," and gave me a bright smile.

On the big day, dignified in her bright gold cap and gown, she stepped up on the box placed behind the podium to bring her four foot eight inches high enough to see over it, surveyed the auditorium and began.

I wish I had a transcript of her speech. I remember it as being thoughtful and moving, but I cannot remember exactly what she said.

Her choice of a graduation present wasn't what the average graduate would choose, either. She wanted a photograph of everyone who came to her graduation. After the ceremony ended, we piled in the cars and headed over to the photographer. Two of the party members had to go, delivering papers and baby sitting, if I remember right, and I might not, so they didn't make it into the photo. Sorry. But there we all were, the rest of us: Margret, her father, her sisters, B's boyfriend, me, my husband, one of the girls who lived across the street.

Yes, she invited her father to come to her graduation. She is the only one of his daughters who did so. He came by bus. When I mentioned he was going to ask the bus drivers where would be a good place for him to stay, another daughter suggested I let him stay in our house. I was surprised, but checked with the other siblings, and with my husband, and it was agreed. He stayed with us.

As I drove to the bus station for him to head back home, he said he was glad I'd married my husband, calling him "someone the girls can look up to". Upon my return, my husband said nice things about how fascinating the father was, and how well he spoke. Yes, I was pleasantly surprised that they got on well with each other.

A Year Ago This Day

A year ago today, I woke to the music of Margret's voice. She was talking with her sisters, and sitting up in bed.

She came back to be with us for such a brief time. Although it was only to be for a few more weeks, I am grateful for every minute we were able to share.