Grief Support Group

I joined a Grief Support Group.

... and found myself surrounded by people who totally get it.

Which is not at all strange, as each of them has someone very dear to them who is not sharing this life of ours any more.

Each of us has chances to tell our story, and to talk about our dear one. We are encouraged to talk about what we are feeling, share "ah-HA!" moments, and tell how hard the holidays, and anniversaries, were, and what changes or accommodations our friends and family have made.

At the last meeting in each series, the group members bring photos of their dear one, and pass the photos around the circle while we talk.

In addition to pictures, I brought an audio snippet of Margret's voice, and her giggle.
Here, I'll let you listen, too. Clicky

Happier Days

I have been happier this past week, consistently, each day, than I have been in a long time.

Part of it is due, I'm sure, to last weekend's visit from one of my daughters. Part of it has to do with longer days, sunshine and warmer weather. Part of it has to do with an email I received from another daughter. It moved me to tears, and made me smile through them.

I took a walk down the hill with one of the neighbors. She is trying to get back into shape after being laid up a while. A walk is more fun with company.

I stopped and took a couple digital photos of the twin linden trees on the hill. I discovered that if I use the viewfinder, I can line up the utility pole with the vertical and the cable with the right horizontal of the crosshairs. I took the photos standing at the joint in the curb next to the utility pole across the street with a thick cable protector running up it. THAT means I can take more pictures from the same spot and layer them to make a time lapse of the tree going through it's year. If I can remember to take my camera with me on walks at least once a week.

Let's have a YAY! for spring, for neighbors, for activity, for new projects and most of all, for happiness.

YAY!!!!

Margret does Yoga, and other athletic things

Before her decreasing oxygen saturations robbed Margret of her get up and go, and other things, she did lots of the things any normal kid does. She ran, she played, she climbed and hollered and played tag.

We walked through our local parks together, and especially enjoyed the hikes through Jacobsburg State Park. All the girls liked to look down from the bridge and spot fishes lurking in the water below. Sometimes, if everyone were very tired when we reached the other end of the trail, I would let them wait together while I trotted back down the trail to the parking lot where we started. Then I'd take the car to meet them, and we'd all go home.

She did gymnastics and balance beam in special olympics here, and when she stayed that year at her dad's house, she did cross country skiing - and brought home a medal.

One Christmas I bought a gift certificate for riding lessons to give to the horse crazy B. Margret came with us, and the teacher offered her a lesson too. It didn't work out exactly as the teacher had expected, with Margret almost falling off. She needed a little more individual instruction than the other girls her age, but both girls got lessons. Margret even competed at a horse show or two, and brought home ribbons. She enjoyed riding. She enjoyed being around the horses. We were very proud of her.

As a family we each got our own bowling ball and shoes, and, surprise, surprise, went bowling! Margret was pretty good, too. I had to hustle to stay ahead of her. Husband was lots better than Margret or me, so we mostly competed against our own previous scores.

Margret and I joined a water aerobics class at the Y. She did great. While I swam laps in master swim, she developed a lovely backstroke with a little help from the swim coach. She was comfortable in the water, and able to swim the length or width of the pool.

After Margret was put on oxygen, her choices in exercise became more limited. I took Margret to Contra dancing (a little like line dancing, but not exactly, if that helps any) but she ended up sitting almost the whole time, too tired to dance much. We tried a yoga class, but that went WAY too fast, and again, Margret sat most of the class watching the other students. I inquired about individual lessons, and that worked much better for Margret. In a one on one teaching situation she excelled. Her muscle tone improved, her balance and coordination too. Some of the breathing excercises, when she had a cold or mild bronchitis, helped her make sure all the segments of her lungs were expanding as best they were able, and helped keep the cold from getting worse. At least in my opinion the yoga helped do that.

Yoga was a really good workout for her as she was recovering from pneumonia a couple years ago. The classes were paced to what she could do, so she was pushed to improve, but not too hard.

Margret practiced yoga with her teacher right up until she entered the hospital this last time.

Darling New Baby Girl and Mom Need Some Help

I made an Edit to remove links because the post about baby Claire is gone from the other end of the link. I don't know how baby Claire is today because I didn't keep checking the links over the years.  It made me to emotional to go back and read again...   But my point that sending cards can put a little extra "bright" in someone's day when they are most in need of it is still valid.  If you know someone who needs a card, send one, or someone who needs a phone call, pick up the phone and dial. The amount of effort you are giving is worth ten times that (at least) to the person on the other end.

Please go here and read about baby Claire, who was born with an extremely rare heart condition (same link as on Crystal's page, if you want to see what the problem is while you are still here), and her mom Jen. There's even a photo of darling little Claire.

Crystal (I'm sending you to her blog) has a Donate button at the top left if you wish to help with finances, and has posted an address so you can send a postcard with good wishes.

When Margret was in the hospital this summer, the cards she received brightened her day. Jen can certainly use a little extra "bright" in her days.

Yes, and read the comments there, too. Don't feel a need to apologize if all you can offer are prayers. good wishes, good vibrations or the like. It all helps.

What? Why are you still here? Go on, Claire's picture is waiting for you there!

More Time. Better Time.

I am thankful, very thankful, to have had as many years with my daughter present in my life as I did.

In spite of the pediatrician at the hospital where she was born, who told me she would die by age two, or if she reached her second birthday she would die before age ten, she lived to be an adult.

Her health declined and she wanted to have her heart repaired. The surgeon, after his office played phone tag with me all summer in 1999, left a message stating simply that she was not a candidate for surgery. His office and I did the phone tag thing because I was back and forth to Florida to deal with my mother's affairs, and especially her house, which needed to be cleared out so it could be sold. I spent a total of eight weeks there, in one and two week blocks. After my return, I could not elicit a reason from his office staff as to why she was not a candidate. We did find out the reason when, in January, we saw the doctor who gave her her diagnosis of Eisenmenger's syndrome. He explained that for many years surgeons would repair the heart of an older child, only to have the child die after successful surgery. As soon as they figured out the surgery was causing these deaths, they stopped. After that, only children young enough not to have the permanent changes in their lungs caused by the heart defects were considered for repair. He's also the one who said she should see the tranplant people, for completeness sake.

Margret was prescribed supplementary oxygen in June of 2000. At that time her 'normal' saturations were in the 80s. The low saturations went a long way toward explaining why she had difficulty following directions, and considering whether she should act on an impulse or not. She lost one of her volunteer postings earlier the same year for not following directions. I am sure it would have helped if she had been given oxygen earlier, but who knew? I certainly didn't. She managed well enough with the day to day minutiae of her life that no red flags went up for me or for her doctors. There were no obvious symptoms as her saturations dropped. A cardiologist opined that the drop was slow enough for her to learn to compensate, so he, and others, did not pick up on it. She lost another volunteer posting after starting on the oxygen. The director did not want a volunteer on oxygen to be in, or anywhere near, their kitchen.

With the other things happening that year, it was October when she first saw the transplant doctor to see if she ought to be considered. He thought she might be eligible for the transplant program, so he scheduled her to see the people at TUH for an evaluation the week after Thanksgiving. While she was off having a test where they didn't need Mom trailing along, one of the doctors stopped by her room looking for her. He found me instead. Realizing how uncomfortable I was asking about her death with her in the room, I took that moment, "What do you think of her life expectancy without a transplant?"

He thought about it for a very long moment and replied, "At her current rate of decline, I give her two years, maybe a little less."

She didn't have the lung transplant. Insurance didn't want to pay for a procedure done so seldom, borrow a pediatric cardiac surgeon from the children's hospital next door (had they ever done that before? I don't think so.) to repair her heart, and give her new lungs.

I can almost hear some of you wondering, "Why a pediatric cardiac surgeon?"

Answer: Unless you are a pediatric cardiac surgeon, you have never had to repair the sort of heart defect Margret was born with. Most folks with that type of defect have either had it repaired as an infant, or died before reaching adulthood, so a typical cardiac surgeon (for adults) has never done this repair.

Along with that, when Margret had an echocardiogram done, the techs at the adult hospital didn't know how to interpret what they were seeing, so the docs sent her next door to the children's hospital to have one done there. The chief of pediatric cardiology himself did her echocardiogram. He also offered us an apology, on behalf of his entire profession, that surgeons around the time of Margret's birth did not offer to repair a heart defect if the heart in question belonged to a child with Down syndrome.

What I wanted for her was the best quality of life with the least invasive treatments, so I was not at all unhappy when the doctor at the next hospital said, "She doesn't need a transplant. We have drugs to manage pulmonary hypertension."

The medications she started on there made her quality of life much better. See also A Lot of Hope The main medication was nifedipine, a calcium channel blocker, which relaxes smooth muscle so it widens arteries and veins. For Margret especially, with her pulmonary hypertension, it allowed more blood to flow through her lungs.

That specialist also believed in treating for CHF (congestive heart failure) before it became obvious. She said her patients were more comfortable, for longer, with treatment. Margret said, "Comfortable is good!" She treated Margret with a diuretic (furosemide) to prevent the fluid build up that is CHF.

Her low oxygen saturations encouraged her body to make extra red cells for oxygen transport. If you move to a higher altitude, your body will do something similar to compensate for the lower partial pressure of oxygen there. It's called the High Altitude Adaptation, and it's what allows people to live anywhere from sea level to high in the Andes. (and other mountain ranges, of course) The reaction by Margret's body was extreme, so her platelets were vastly outnumbered, as is true of many people with PH. On the other hand, the edges of the holes in her heart are rough, and encourage platelets to stick, and start the clotting process. So she is at risk both for random clots and uncontrollable bleeding. The clotting being more dangerous, the doctor prescribed a blood thinner.

This specialist was also hopeful about life expectancy. She told Margret that as long as she responded well to her medications, and nothing unforseen happened, she could live a long time. How long? we asked. Well into her forties, she said.

Some years later, when she was again doing less well, another specialist put her on Revatio to help control the PH. The difference it made was remarkable. From being quiet, she returned to chatty self, and from an "Anything will do," attitude, she recovered her ability to be choosy, and sometimes even to argue with me. You would not believe how happy that first argument made me. We argued about whether we would have ice cream for dessert. Yes. She won.

All these medications, and others, improved her quality of life, and increased the time we had together.

I knew she was likely to die before me, but I wanted her to grow old and let me die first. No parent should have to cope with the death of their child. There is a part of me (selfish, selfish!) that still insists we should have had more years together, more birthdays, more holidays, more road trips. More everything, more time.

We did the best we could, she and I. I sometimes wonder if my best was good enough, but her best was absolutely perfect. She enjoyed her family, and they enjoyed her. She enjoyed being around people and chatting with them, and her volunteering allowed her to give of herself. Giving was important to her, and making the world a better place. She did that.

A Lot of Hope

In 1999 Margret got tired of being tired. She decided she wanted to get her heart repaired, at long last, but the pediatric cardiac surgeon suggested by our family doc said she was not a candidate for surgery.

Upset that he would not explain further, I hunted the internet for a doctor specializing in adults with unrepaired CHDs, and found one at Jefferson. We got an appointment and he told Margret that she had Eisenmenger's Syndrome. Finally, in January 2000, we had a diagnosis! He said the reason she was not a candidate for surgery to repair her heart is because changes in the lungs caused by the heart defect become permanent, and are not compatible with a repair. In other words, if she got her heart fixed, she would die. He encouraged us to consult with the tranplant doctors at Temple. It was a year of catastrophes, so we did not get with the transplant people until October. Her evaluation was scheduled for just after Thanksgiving. My Mom died Halloween morning, and we buried her with Dad on November 6th.

Margret had been put on oxygen in June, because I noticed her feet turned from their usual purplish color to a dirty white when she walked around. No one had thought to check her oxygen saturations before May, because she seemed to be doing well. I had no idea. Her saturations were in the low 80s, and 6 liters of oxygen only brought them up to the high 80s.

The transplant folks originally thought an 'en bloc' of heart and lungs would be a good idea. They finally settled on a plan of giving her new lungs, and borrowing a pediatric cardiac surgeon from the children's hospital next door to repair her own heart. Our insurance said no. Given a choice of fighting the insurance or going to a different hospital, we went.

The doctor there said there was medication that helped with the PH. I'd asked the transplant guys about medications, and they tossed it off with, "Oh, it's experimental, we only give it to our people at the very end to help them hold on so they can get new lungs." The new doctor explained there were THREE medications she found useful, and how she did a challenge with each medication while measuring the pressures on both sides of the heart through catheters to decide which medication was best, and what dosage would be most effective. I explained it again, in little words, to make sure Margret and I both understood. Then Margret decided she would try medication. It was a week in the hospital, the first day in the cath lab, that night in CICU, and the rest of the week in the cardiac stepdown unit while the doctor adjusted the doses of the other medications she would be taking with the main one.

When we went home, Margret trotted right up the stairs to her room, not stopping once! I had tears in my eyes, because she used to stop 3 times on the way up the stairs to rest, finally clinging to the rail at the top while deciding if she had to use the bathroom, or if she could just go plop on her bed.

Margret and Frank Sinatra

Margret and Frank Sinatra. I'd never thought they had much in common, if I thought about it at all, which I don't think I did. *wrinkling brow while trying to decide if that made any sense*

Today, reading over the lyric for My Way, I see they had quite a bit in common. Margret lived a full life:

She got to see Ricky Martin live in concert at Radio City Music Hall, and from great seats.
She and I did a road trip, by car, to Oklahoma to visit her little sister and her niece and nephews. We had a great time.
She enjoyed time spent with her little cousins and nieces and nephews at Thanksgiving and Christmas gatherings.
She got to go out with her respite person, to do dinner and a movie, or go shopping, or whatever else she desired that they could fit into an evening.
Over the course of her life she had a job or two.
She volunteered.
She enjoyed friends and family.
She liked food, and loved to have take away, or eat out at a restaurant.
She liked to be tucked in at night. We exchanged hugs and kisses, and "I love you"s.

Regrets? Yes, I think she had a few, but small ones given all else she had to cope with.
She wanted to marry and have children of her own, but that was not to be.
She wanted to go on a cruise, but I hadn't got all the logistics worked out in time.
She wanted to spend more time with her sister's babies, but they lived on the other side of the continent, so we did the best we could when we had the opportunity.

I tried to help her make her life as full and happy as possible. And I think I succeeded. Mostly. Because when all was said and done, she was an adult, and felt the things she did because she was herself, and responsible to herself. *Did that make any sense? I hope so.*

For my own self, I can say "Regrets, I have a few, but they're small." The big things, like knowing she knew she was loved, and knowing she knew she could depend on me to help the best I could, those are covered. I did my best. I only hope it was good enough.


My Way
And now, the end is near;
And so I face the final curtain.
My friend, Ill say it clear,
Ill state my case, of which Im certain.

Ive lived a life thats full.
Ive traveled each and evry highway;
And more, much more than this,
I did it my way.

Regrets, Ive had a few;
But then again, too few to mention.
I did what I had to do
And saw it through without exemption.

I planned each charted course;
Each careful step along the byway,
But more, much more than this,
I did it my way.

Yes, there were times, Im sure you knew
When I bit off more than I could chew.
But through it all, when there was doubt,
I ate it up and spit it out.
I faced it all and I stood tall;
And did it my way.

Ive loved, Ive laughed and cried.
Ive had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing.

To think I did all that;
And may I say - not in a shy way,
No, oh no not me,
I did it my way.

For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way!

(my thanks to Lyricsfreak dot com for these lyrics)

Supportive Family is Important

Later that same day I called family from the pay phone, to let them know there was a new member of the family and tell them she had Down syndrome.

My mother's reaction was, "A defective grandchild, how sad." That pretty much ended our conversation.

My mother-in-law responded with pleasure: A girl, and healthy other than the Down syndrome. Did I know that my brother-in-law had worked at a camp for people with mental retardation?

No, I hadn't.

She put BIL on the phone and he told about some of the characters he met in the camp setting. One gentleman with DS was very childlike, in spite of his advanced age, his white beard and hair, and very much enjoyed having his beard brushed. Another had a marvelous sense of humor. Another had a very sweet disposition. I cannot remember all that he told me, but the sense of it was that these individuals were people first, with foibles much like other people. I was much reassured.

After I was off the phone, I spoke briefly with a weepy young woman. She could not fathom my joy in having a daughter with Down syndrome when she had borne a normal child and felt so unutterably sad. She didn't say so when we spoke, but she was giving her little boy up for adoption.

Bitter Sweet Celebration

We chose to call it a Celebration of Life instead of a Funeral.

Her sisters went shopping to buy her last party dress. They succeeded, although mid July is not the best time to be hunting a prom gown. The dress they found was hot pink, floor length, with spaghetti straps, and decorated with swirls of beads and sequins. Had this been chosen for a normal event, the dress would need to be shortened by more than a foot, for Margret was only four feet eight inches tall. In this instance, in the creative hands of our funeral director, the excess length became long sleeves, and the beaded portion filled in between the top of the dress and the sleeves.

We planned bright colored flowers and had balloons in pink, orange and yellow that echoed the flower colors. For background music I made a cd including her favorite artists, Hanna Montana, Billy Ray Cyrus, Ricky Martin, Maná. Her youngest sister requested tracks by the Marshall Family; Dad asked for Livin' La Vida Loca, because it every time he heard it, it reminded him of her and how she was so willing to dance. I picked Eres Mi Religión by Maná, and Ángel by Cristian Castro, among others, because she so enjoyed listening when I played music of that sort on the Latin Beat. Sisters B and C each picked a song that brought her to their minds.

As part of the service, attendees were encouraged to come forward and share their unique memories of Margret with the rest of us. Seventeen people overcame their reluctance to speak off the cuff, and shared. An astounding number!

C lent her video camera to Margret's oldest niece, so there would be a record of the celebration to share with family members who could not join us. She did a fine job.

Although C arranged for me to watch the tape, I could not bring myself to do so for weeks. I watched the video, finally, a couple nights ago. I experienced relief, and a deep appreciation for everyone who braved the discomfort of speaking in front of a group. I transcribed one of the memories that moved me most to share with you, only leaving out some 'and's, and a bit that I could not hear well.

F speaks on Margret

My last memory of Margret was at B's Octoberfest. She gave me a hard time because she thought I was flirting with C. She in no uncertain terms told that that was HER sister and I was not allowed to have her. I think she was teasing me. She also ribbed my brother about it and he was very confused. She had a funny sense of humor that way.

I've known C since I was 5 . . .

I've known the M family, all encompassing, as it has changed throughout the years, and I always remember Margret,

and if the M family is like a light house showing love, no matter what situation happened there was always love, Margret was the beacon, at the top.

She was the bright light that you always gravitated to; you always felt good around her.

I can think back to even when I was a child, hanging with C (when she wasn't being bad),
she was there, and she was smiling, and she was laughing, and always joking around, wanting to do something and be involved.

I think we should take from that as a lesson on how to live - a lot of times we let the stressors of our life take us over,

I think sometimes we should stop and think about Margret and how she enjoyed every moment , no matter what it was, . . . she made something positive out of it, and it made everyone
around them feel that much better, and so LOVE's the word.
it will carry on through each and every person who she has touched because you can't have a memory of her and not think happiness and not think love.

So, in the words of Jonathan Larsen, "Live like there is no day but today."