Saturday, July 16, 2016

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.

Tuesday, July 8, 2014

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:

and here's another, to Merle's PH Support Group pages, lots more good info:

Thursday, June 7, 2012


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.

Friday, December 23, 2011

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.

Thursday, July 15, 2010

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.

Thursday, July 8, 2010

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.

Thursday, May 13, 2010

For Mother's Day

A bit late, but still apropos, I found something to share with you, by someone who says it better than I can. I found myself in it *, and so might you.

You may want to keep tissues handy while you read.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.

We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.

Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Here is a link to the post where I found it on Janis' blog, and a link to the original source. Go read. There's more inspiration to be found there, too.

*"Without formal education, we could become board certified in neurology, endocrinology, and physiatry."
Yes, this. In particular, I can recall being asked where I took my medical studies. The first time I was asked, I replied that I was not a medical professional. Other times I replied the library, books, the internet. Simply being Margret's mother was an education.

Simply being the mother of a special needs child is an education. Sometimes we can turn the tables and educate the doctors,