We're coming up on Christmas again, Number 8 since Margret left us.

It took me over a year to figure out what to do to honor her memory, her generosity, her love of kids, my love of her; and to make me feel like I was doing something worthwhile in her name.  Turns out my love of crochet comes in handy for this.  Making hats for Valley Youth House: for kids, something worthwhile, and it would please Margret.

The first year I made hats for Valley Youth House, there were 16 hats.  That was 2010.

This year there are 132 hats, 8 of them with matching scarves, 2 baby blankets (with matching hats for 0-3 months, 6-12 mos, and toddler sizes, which are not counted in the hat total), a lap robe/snuggle blanket, and I made some earrings this year too.  I used making earrings to unwind from the stresses of daily life of a caregiver, and as small gifts for friends and family.

Have a look to see what I made this year:

Stack of Crochet Stuff

Scarves and matching hats

One of the baby blankets with matching hats

Earrings added this year

 Let's see what I can do to make this coming year notable and worthwhile.

Hard to believe that it has been eight years, I think of her so often.

Several days ago we had a fierce thunderstorm.  I stood out on the porch and watched the rain bucket down, watched the lightning flashes and counted to the BOOM! I was also remembering my daughters and me sitting on the porch wrapped in a blanket to keep the wind and rain out, watching another fierce thunderstorm and talking about Margret who had just passed away.

Sometimes when I come in, the front door doesn't close all the way, and a gust of wind will push it open.  I find myself saying, "Come on in, Margret."   Yes, I'm silly.

Happy Birthday, Sweetie Pie!

Today is Margret's birthday.

She would be 43 today.  On Monday, she'll be gone six years.

Grief fades into the background, and life takes on a new normal.  I don't hurt the way I did when she was first gone. And yet, I still miss her.

Last night I was sitting on the porch watching the lightning play around and behind the clouds, and listening to the thunder. I was thinking about the last time I sat on the porch watching a thunderstorm with my daughters, snuggled together under a blanket, giggling and enjoying being close.  I smiled.

Last month I went to the PHA Convention in Indianapolis with Merle.  I met several more internet friends face to face for the first time.  Margret would have had a marvelous time.  She would have made friends with EVERYBODY, because that was Margret.

PHA has an early diagnosis campaign, and I plan to keep telling anyone who will listen about PH, just as Margret and I did for years.  It's too late to help my daughter, but I want to get out the word about the benefits of early diagnosis so that no one else has to go through the decline she did before getting appropriate treatment.

Here's a link to the PHAssociation website:
http://phassociation.org/

and here's another, to Merle's PH Support Group pages, lots more good info:
http://www.clevelandareaph.com/

Anniversaries

We are coming up on anniversaries: anniversaries of last doctor visits, hospital entry, transfer to the other hospital, last birthday and death. I find myself contemplative and sad.

I have lots of memories of times with my daughter, some of them good, and some of them sad. I think of the good memories more often most of the time, but just now I am remembering my daughter being sick, and impatient to get better and back to her normal routine.

I remember going back to the doctor with her because she wasn't well yet, and her having a chest x-ray to check for pneumonia. The x-ray was clear.

Some days later I remember her breathing not sounding right, but she didn't want to go back to the doctor again.  Then the next day her breathing sounding more not right, and insisting she go.

I remember the doctor telling my daughter she needed to be in the hospital, and was ordering an ambulance to take her there. My daughter crossed her arms across her chest and said, "I'm going in my mother's car."  The doctor said "You'll be more comfortable in the ambulance, they can give you supplementary oxygen."  Margret lifted her chin and said, "I'm going in my mother's car."  The doctor gave up, and called ahead so they would be expecting us to walk in.

I remember the difficult night she spent in the hospital, and the stream of people who came to see her the next day, in particular the cardio who asked me what our long term plans for her were, who I told to call her specialist in Philly, who ordered up a helicopter to take her to the hospital where he practiced, and where they had better training and equipment to deal with her unique problems.

I remember the caring and sympathetic transport crews, the squad who would take her to the helicopter landing site, and the helicopter crew (with a woman pilot!) who transported her the rest of the way.

I remember going home to pack a bag, and my husband insisting that I eat something before I go.  I remember the drive to the other hospital, and the call I got from daughter's nurse wondering where I was (still on the way).

There's more that I remember, in those last weeks:  I especially remember family and friends and the love they gave, and the caring and giving and help even from people we'd never met before.

I'm missing you sadly today, my dear, tomorrow I expect to remember other things about you and smile.

A Sweet Little Message from the Past

I got a Christmas card from Margret. It was signed " with love Margret".

How is it possible to get a Christmas card from my daughter, when she died three years ago?

I was going through a box of Christmas cards left over from other years, partial sets, a little of this a little of that... and found a few that Margret had signed, but not sent.

It made me happy and sad at the same time.

The every day stuff gets easier, but this is only the third Christmas I'm spending without her.This year it isn't like the first Christmas with her gone. The pain of her absence was so much worse then. I wasn't sure at the time how a human being could live through that agony, but living through it IS possible.

I'm gonna be OK over the long haul. The happy memories predominate, the good times come to mind more easily than the sad. I have my husband and my family and you guys; and I have lots more hats to make before I am finished here.

I'm pleased to announce that I donated 17 hat/scarf sets to Valley Youth House in Margret's memory this year. The receptionist admired them, and hoped aloud that I would have time to make them some more for next year.

Hat photos here.

Second Anniversary

The sun rose today, just as it has every other day over the last two years, but behind clouds. It rained. Thanks universe, I appreciate the sentiment.

I have been thinking of my daughter Margret today, and remembering her fondly.

I've been remembering good things, fun things, happy things like what a great giggle she had, how much she liked ice cream, how we would sit together and watch Dancing with the Stars - especially the season Billy Ray Cyrus was on. She would clap her hands in delight, sometimes giggling at the same time. She cast ALL her votes for Billy Ray that season. Until he had to leave.

Did I cry today? Yes, a bit. I cried as I was remembering my feelings when the doctor said "end stage," how I was shocked, yet at the same time, not really surprised at all. Then the scramble to let people know it was time to say goodbye. I'm grateful to each and every one who came to tell her, one last time, how much loved she was. Her passing was peaceful, and quick. I held her hand, and tears rolled down my face. The feeling as I let go of hope I didn't know I was still clutching was like water pouring from a pitcher, vanishing as it streamed from the pitcher's lip. Not a very good explanation, I don't think, but the best I can manage. Then numbness set in, and the numbness let me function in those sad first days after.

Margret belongs to the past. Never again will I track doctors appointments for her, make sure she has all her prescriptions refilled in good time, check to see that she's up with her alarm clock in the morning, help her change an oxygen tank. Lots of things in the Never Again list.

Margret also belongs to the present because I think of her every day. Some days I smile, remembering, while I put the silverware away, what an amazingly consistent and neat job she made of it doing the same thing. Other moments are less happy. I still miss tucking her in, the good night hug and kiss, little interchanges like our "Good night, Margret, sweet dreams." "Good night Mama, I love you."

She also belongs to the future. My newest granddaughter, according to her mother, makes some of the same faces that Margret did, some of the same gestures, and sometimes doesn't close her eyes all the way when she is asleep, another Margret trait. That is comforting in a way I can't explain. It just is.

Yes, I'm still here. I'll never forget my sorrows, but I know I'm not finished with my joys. I'll go on living and loving and doing fun things.

I'll rise again tomorrow. Just like the sun.

Happy Birthday, Margret!

It's Margret's birthday today. She would be 39 this year.

Margret would approve my day's activities. I got a TDaP booster since I can't remember the last update I had, and am planning some travel. I'm catching up on some paperwork (a chore, ick, but chores gotta be done). I'm making some earrings (Yay, a FUN activity!). And I'm eating sensibly.

She would also be happy that on Monday I called the church number to talk to the pastor who came to visit her in hospital. He was away on vacation, so I left a message with the secretary thanking him for his visits, thanking the membership for their prayers because that meant a lot to Margret. He had asked if there was anything else, anything at all, that they could do for Margret, and I responded it would be a help if anyone willing would donate blood in Margret's name to replace the blood products she used. I've been told that as a cancer survivor I should not donate. And I said thank you to those who donated.

Happy Birthday, Sweetie! We still miss you, and we remember you with love and fondness.