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.

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!!!

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 http://elijahslegacy.blogspot.com/ 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!

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
himmelberger.blogspot.com

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!

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.

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.

Ana's Comment - Thank You!

Today I checked my blog and got the sweetest message from Ana, the brave and caring mom of a beautiful little girl with DiGeorge Syndrome and CHD. I'm hoping she won't mind my sharing part of her comment here because it really touches on why I started my blog.

Ana wrote, "Sorry, I know you mean your blog to be geared towards grandmas, grandpas, aunts and uncles, etc. But as a DiGeorge Mommy, I have to tell you that what you are doing is admirable. I often see that fear or sadness in my mom's eyes. I can imagine how her pain must be two fold, 1st to see me, her eldest daughter stressed and in tears, and second for her youngest granddaughter. I will send my sisters your way, maybe they have venting to do too."

Well, Ana, you touched my heart, so I added a line to my blog description to make sure all parents feel welcome here, too, and if your sisters need to vent, I am here! If they or anyone wants to vent or talk in private, my email is stimacs@att.net.

I know your mom is very,very proud of you! I know, because I am more proud of my daughter every day. Sometimes we are so concerned with the grandkids, we forget to tell you that. The fact that you have such empathy for what she is dealing with, in the midst of everything you and your darling daughter are going through, is a truly beautiful thing.





September 24, 2008 12:28 PM
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Calling all Grandmas with Heart

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.

Drew just had his 3rd open heart surgery at Stanford University. He is 4 years old and doing great after a 6 week hospital stay. His parents, my daughter and son in law, could not be doing a better job raising him and his 2 year old sister. However, I sometimes find that I can't let out my true feelings to them, as they are going through enough of their own fear, conflict, etc.. I try to just listen and offer encouragement but sometimes its hard to know what to say and its hard to keep my own fears, thoughts, etc in all the time. I know they can't possibly feel what I feel, but I bet you can if you're in this situation and I'd love to talk about it. 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 me that have special children of their own.