Thursday, July 22, 2010

Praying for Baby Joseph!

I just met a new heart grandma yesterday over the phone. She works with my brother and found out a week after her first grandchild's birth that he has multiple heart problems and possible Di George Syndrome. The family lives in Coalinga, CA far from many of the expert medical care baby Joseph will need. If you have suggestions for them, please let me know and I'll send them all over to her.

Baby Joseph is undergoing open heart surgery today and I ask anyone who is reading this to send his family your most positive supportive thoughts, prayers, and good wishes. They are at a children's hospital in or near Fresno, not sure of the name yet, but the surgical team from Stanford came down for the surgery. Here's to you, baby Joseph, be strong, feel the love and support of your family and heal fast!!!!

Friday, April 23, 2010

Hurt is the Little Baby Sister of Pain

Hurt is the little baby sister of Pain

As I was trying to think of a better word for pain (not the physical kind, but the heart broken, all encompassing mental well being kind) I decided that it is okay the way it is. It seems it should be longer or uglier or harder to say but I can’t come up with anything better.

Its better than Sane because Pain is the opposite of Sane. Pain erases everything that ever-made sense. It leaves a dark open pit where any semblance of Sane used to live. Pain mocks Sane.

It’s better than Fame because Pain takes away all connections with other people. Pain allows you to pretend and hint at human connection, but never have it. It demands that you be on your own and reminds you always that you will die that way – and you look forward to that.

It’s better than Pang because it never ends or gets better. Sometimes Pain comes in Pangs but only after its been around a very, very long time. After years, Pain can thankfully hide below the surface for minutes or hours, if luck is really with you, a day, but it forces itself out of you in a Pang that turns back into Pain in a millisecond and engorges your whole being just as if there was no living in between.

Its better than Hurt by far. Hurt is the little baby sister of Pain. Hurt flirts with you and lets you seek attention and even retribution. Pain is the end of Pain. It doesn’t matter what it feels like because it doesn’t matter – to anyone – not even to you.

It’s better than Torture except that Torture is also a good word. Torture is a physical word and although Pain causes physical things to happen to your body, that is only the beginning of it and sometimes the best part of it. Torture can end and Pain cannot.

It’s better than Death or Dying because those words also suggest an end and Pain never ever hints at an end. It doesn’t allow you to even imagine one. It is a endless pit of dark and nothingness that is the biggest part of your life.

It’s better than Scorn because although the person in pain is an object of contempt, the contempt has no reason, no beginning, and no explanation that can be fixed. It just is. The person in Pain becomes his or her own object of contempt.

It’s better than Bitter because Bitter can be tasted and felt. Pain doesn’t feel much, if it did it might be easier to bear. It is an abyss of darkness that is a mystery to the person in Pain. The world has changed and the person in Pain can’t figure out where that world went to or if it ever really existed or why they do.

It’s better than Hate because Hate implies that there could be Love. Love is something that is too questionable to even consider to the person in Pain. Does Love make a difference? Not really. It feels nice but then when it’s gone it’s gone, when it changes, it changes. Pain is never gone and never changes.

Despair is close. I do like the word “painful despair” but its too long and would never really catch on.

Torment doesn't quite work because it implies that an outside force is at work. When Pain enters your life it may have begun with an outside force but it is so all encompassing inside of the person in Pain that anything that suggests any outside variable is ridiculous.

Anguish seems to bring up the idea of tears or screaming or striking out but anyone in Pain knows that you can't do that and if you did it wouldn't change a thing and you might never be able to stop.

So even though there should be a better word than Pain, I haven’t found it yet.

Tuesday, August 18, 2009

Grandma's have heart - Starting over

I started my blog a few years ago to offer support to grandparents and relatives of the parents of heart babies. I thought I'd send out an updated version of my first blog, in case there are some families that are new to CHD and or DiGeorge Syndrome. If so, please let me know if there is anything I can do to help, or if just want to vent to someone who will understand.....

Hi, I am hoping there might be a grandma, grandpa, aunt or uncle out there who is living with the reality of a grandchild (niece or nephew) with CHD and wants to talk about it. My little guy was born with interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He is the bravest person I know.

Last June Drew had his 3rd open heart surgery at Stanford University followed by a 6 week hospital stay. He is now 5 years old and just finished his first season of tball and about to start soccer!

When life wasn't as good as it is now and Drew was hospitalized so many times with pneumonia and other issues related to his immune system, I felt so alone in the world. His parents, my daughter and son in law, could not be doing a better job raising him and his 3 year old sister. However, knowing the agony and fear they lived with every day, I tried my best to keep my own anxieties and heartbreak to myself. It can be very hard to be the strong one and to offer encouragement when your own baby is experiencing what no mother should ever have to. I guess you could call it double agony. It is very hard to keep all these feelings inside, while trying to be strong for your own child. there aren't many people who can really identify with what I went through and will always go through to some degree, but I know you can if you're in this situation and I'd love to talk about it to you, if it would help. It is hard to be the mother of a mother with a heart baby. Its hard to see her cry her eyes out over other heart babies that she knows. Its beautiful to see her help them and reach out to them and watch her give them her support, though, and I'm wondering if I can do the same with other moms, dads, and relatives of special children like mine who have special children of their own.

Wednesday, June 3, 2009

When we hurt the ones we love

Today Drew asked about Faith and why she was still in the hospital. Andrea had to tell him that she wasn't in the hospital but in Heaven now. Drew cried and wanted to know if she was very old. Guess where he got that from? He always asked why our dog, Duke, died and not wanting him to worry about death, I always told him because Duke was very very very very old. Once he asked me if he was going to die and I told him not until he was very very very very old. He asked me if I was very very old and I told him No, you have to be older than Great Grandma to be very very old. No wonder he was shocked that God took his little friend to heaven. I think I made things worse for him and worse for Andrea. How confused he must be and I wonder how he will make sense of it? Its not the same for a child who hasn't spent months in the hospital hurting and sick. I'm so sorry, Drew. I'm so sorry, Andrea. I have let you both down so much.

Monday, June 1, 2009

Another Angel in Heaven

The sweet little angel that we knew as Faith passed away in her mommy's arms today. She fought hard and strong and taught everyone who knew her or of her what love, strength, faith, and spirit really is.

This little sweetheart was born the same time as my grandson, Drew. She was in a little crib in the same unit that he was in recovering after his first surgery. Her family went through the same ups and downs and therapies and milestones and much more than we did. Her mommy and Drew's mommy bonded then and have remained in each others lives as they have in other heart families' lives.

The sorrow I feel for Faith's family and for all of the heart families and DiGeorge families that have to bear this immense loss is unspeakable. I will always KEEP FAITH and if you knew the story of this little girl, you would too!

Have fun with grandma in Heaven, Faith! WE LOVE YOU!!!

Wednesday, April 29, 2009

Monday, April 6, 2009

Elijah's Legacy

Elijah was a ray of sunshine in the lives of an entire family that didn't even know they needed and craved the warmth until he was born and brightened their lives. DiGeorge Syndrome claimed his sweet little life but his legacy will live on forever and his grammie would like your help. Grammie is fighting for other families that are facing the shock, the questions, the uncertainties of DiGeorge. Please visit her site at and let her know if you have something to add to her ever-growing network of support and educational articles about DiGeorge and please share it with those that may benefit from what she has to share.

Thanks, Grammie, your strength is an inspiration to us all!

Thursday, February 5, 2009

Leighton Harper gets a new heart today!

This is a big day for Leighton Harper and his family. He was born on August 27th, 2008 and has spent his whole sweet little life in a hospital room ever since. He has Hypoplastic Left Heart Syndrome. He has had his ups and downs and his loving parents have kept extraordinarly positive during these months and have barely left his side. When they had to, Leighton was left in the care of his grandparents, and of course, the remarkable staff at ACH in Little Rock, Arkansas. As we waits for his new heart to arrive, he is having his aortic arch repaired. Since his arch was so tiny they apparently had no choice but to replace it so that Leighton would not have any blood flow restrictions in his new heart.

I'm calling on all grandmas and grandpas, aunts and uncles of heart babies and anyone else reading this blog to please say a special little prayer today for the Harper family... for Leighton's surgery to be a success and for the continued peace and strength his family will need to get through this ordeal.

Thank you from the bottom of my heart.


Friday, January 30, 2009

So Proud!

Andrea and baby Nurdin

I am so proud of my daughter, Andrea, for how she has reached out and cared, supported and has just been there for other heart moms since Drew's birth. Obviously her road has not been an easy one, and even when it was at its worse, she still found that helping others in her situation helped her, as well. If you click on the title of my blog today, you can go to her site and read back a few blogs to the story of Zumrat and Nurdin, who were flown in from Krygyzstan, because they don't do the type of surgery this sweet 9 month old little baby needed and he would have only survived another six months without it. The Dr. that assisted in Drew's last surgery performed it for them free of charge and an interpreter was even flown in with the mom because she speaks absolutely no English. Imagine the trust this mother had in order to believe that what these people told her about her baby was true and to follow through with such a scary journey. He has never had meds, since they are not available where they live. She doesn't have a phone or electricity and in the winter it gets 40 degrees below zero. Her husband has one outfit that he hangs on a hook every night and puts back on in the morning. They also have a 3 year old daughter. In her village she was told that her sonb would grow out of his obvious problems. Amazing! Anyway, Andrea stayed with them, along with some other wonderful supportive heart moms, throughout the surgery and post op and Zurat has come to love my daughter. I don't blame her! With everything else Andrea does in a day, she makes the time to help this sweet mom feel comfortable and secure and finds such joy in helping others! I only wish that I will have such an opportunity some day.

Nurdin's Mom, Zurat and Andrea. To read more of this story, go to

Monday, January 5, 2009

Favorite Grandparent Quotes

People have been sending me grandparent quotes since I've been blessed almost five years ago with my first grandchild. I thought I'd list some of my favorites here. Please add yours, I'd love to read them!


What a bargain grandchildren are! I give them my loose change, and they give me a million dollars' worth of pleasure. ~Gene Perret

A grandmother is a babysitter who watches the kids instead of the television. ~Author Unknown

Grandmother-grandchild relationships are simple. Grandmas are short on criticism and long on love. ~Author Unknown

Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children. ~Alex Haley

Surely, two of the most satisfying experiences in life must be those of being a grandchild or a grandparent. ~Donald A. Norberg

The simplest toy, one which even the youngest child can operate, is called a grandparent. ~Sam Levenson

Grandma always made you feel she had been waiting to see just you all day and now the day was complete.
-- Marcy DeMaree

Saturday, December 27, 2008

Merry Christmas to all !

What a wonderful Christmas I am having.

It all started with Thanksgiving, which I had at my house with all three of my children under the same roof!! We had my brother, Tom, my sister-in-law, Lisa, the Himmelbergers, and our niece, Erin, home for the holidays from UC Santa Barbara.

The following week, Steve, Thomas, and I got to go to Disneyland with Andrea, Dan, Drew and Ava. What a perfect, wonderful day it was! Drew and Ava were as excited as could be and Drew never slowed down, not even once. Dr. Hanley did such a good job with Drew's last surgery he is like a whole different child. I swear, he has even grown taller and is as healthier than I have ever seen him. What a joy! There is definitely hope for all of you heart families out there. Have trust in God and in the doctor's and your little one will be going to Disneyland, too, soon. Without a stroller!

We were able to make a trip two weeks later to Northern CA to see Andrea and Dan and the kids again for a few days. Andrea and Dan had their annual Christmas party while Steve and I took our grandkids to my sister's house in Sutter Creek to spend the night and help decorate their tree. Again, nothng but pleasure! Before we headed up to Sutter Creek, we took Drew and Ava on the Polar Express in Sacramento and they loved every minute of it. To see all of this again, through your grandchildren's eyes is such a wonderful thing to behold. Sounds corny, but it is true.

Rachel checked her grades and did well with her classes last semester, so is moving on to complete her second year at CSUCI. We are very proud of her. Thomas is working hard as general manager of his Fastenal branch in Ranco Cucomonga and is near the top in sales for his district.

I am very happy to find that one of the little heart babies I am following, Leighton, has just moved from intensive care to the CVICU after 4 months in the hospital. They can now hold their little guy any time they want to! He even extubated himself accidentaly last week and has been able to successfully stay that way after numerous unsucessful attempts by the doctors! Congratulations, Leighton, Laine and Rich ( /leightonharper)

I am very lucky and I know it. I wish you all a happy, healthy, peaceful New Year!


Friday, October 24, 2008

Drew is Medicine Free!

I am so happy to share the fact that as of last week, Drew is officially off of all medications. This is the first time since literally the day he was born. I waited a while to share the news because there was a slight chance he might need the lasix and/or spiranolactone again if a certain amount of swelling came back, but so far so good and I am a happy thankful grandma!

Monday, October 13, 2008

My Sweet Little Ava Girl

Hi Everyone,

I am still waiting to see if there are any other grandmas or relatives of children with CHD and/or DiGeorge Syndrome that need to vent or talk or get encouragement from Drew's, hard, but very successful 4 years,but so far, not really. I wonder if I really am the only grandma who felt soooo alone and scared and unable to ever find anyone who really understood. So, I'll keep my blog up for a while longer, just in case. But, in the meantime I have to write about something so I will write about my day today.

My day started with an hour and a half drive to work. It's usually about 45 min., but today there were fires all over the place causing lots of freeway closures. I was proud of myself, though, because of the 5 people who live in Santa Clarita, I was the only one who even went to work today. Hopefully I earned some bonus points that will make up for all those days I took off for Drew's last surgery. And the days I left with no notice when he was hospitalized over the last few years. And those days I took to stay with Drew and Ava while Andrea and Dan went on a little vacation a few months ago. And the days I'm taking in December to go to Disneyland with them. Come to think of it, driving through horrible traffic is a small price to pay for having the freedom to spend time with my grandkids when I need it.

So, today I was at work feeling frustrated and not too happy when Andrea called to check on me because she heard about all the fires. Hearing her voice cheered me up right away, but then she asked Ava if she wanted to say "Hi" to Grandma. Ava grabbed the phone, said "Hi, Grandma" in her adorable little voice and talked to me on and on about how she wanted to talk to me but Drew didn't. Apparently He was busy playing with his Leapfrog. Isn't that cute? Anyway, it was adorable, maybe only in a way a grandma can appreciate.

Monday, October 6, 2008

Lawsuit - Who Cares?

We're being sued for almost $100,000. Our then 17 year old daughter had an accident almost two years ago involving two other cars carrying eight people total. Since she was the one doing the rear-ending, it was deemed her fault, regardless of some very interesting other circumstances. The good news is that our insurance limit is $100,000, so although we are the ones named in the suit, hopefully our insurance will cover it all. The better news is that no one was badly hurt or spent a night in a hospital or broke a bone. That isn't stopping two of the families involved to sue for huge amounts of pain and suffering, however.

Uncharacteristically, I am not too upset over this beyond a deep disappointment at the greed of some human beings and how it saddens me that lying comes very easy to otherwise good people when dollar signs are attached to the lie. In today's society of accumulating money no matter the means, it seems that there is no longer such thing as an "accident" and I'm sad that my daughter is learning that at such a young age. (I'm happy that she is a much more cautious, observant driver now, though.)

The reason I am writing about this isn't to complain about the lawsuit, its because I really learned something about myself when I told a coworker about it. She was shocked at what was happening and at how the legal system works and asked me how I could stand the stress. Without really thinking, I answered that I wasn't really that stressed by it all, only saddened. She asked me how that could be and I told her that after going through what our family has gone though with Drew's three heart surgeries and the last four years of many, many medical ups and downs, even losing my house just didn't seem so important to me anymore. And its true! I have prayed for Drew's health and Andrea and Dan's peace and joy for so long now, that it really is my definition of happiness. If I lose my house, we'll figure something out, if they tax our wages, maybe we'll retire early, what ever happens will happen, but Drew is healthier now than he has ever been. He has come through this last surgery with flying colors after weeks and weeks of a very difficult recovery and Andrea and Dan seem more at peace now than they have been in a long time. Who cares about a silly lawsuit? Not me! It's just not that important in the scheme of things.

Tuesday, September 30, 2008

What have your grandkids said cute lately?

Okay, I miss my grandchildren so much lately it actually hurts. They aren't that far away, I know, compared to some - but they are 6 hours away, which is too darn far! The last time I saw them was a month ago. I only hope I can retire when they are still young enough to want me around. I think my daughter will still want me around because by then maybe she'll be getting tired and want some help with the kids.

So, I decided to cheer myself up by listening to what your grandchildren (children, nieces, nephews, etc.) have said lately. If you have a cute little something to share, please do so in my comments (because I don't know of a better way) and we can all enjoy them.

Give your grandchildren a hug and a kiss today!
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