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!!!

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.

We're All In This Together

Since starting my blog I have heard from a few grandmas out there that have been through the heartbreak of having to stand by while a child of theirs got the news that their own baby was sick.

They have had to wait and pray and be strong enough to be the mom their child needed while trying not to register their own pain and fear for the little life that they loved more than life itself. They had to witness their own children's heart breaking at the same time that their precious grandchild's hearts were being operated on, more than once.

They experienced joy, relief and happiness unlike anything they ever knew existed. They know they are blessed and they are accepting and loving and thankful and strong. They have educated themselves about the anatomy of the heart. They have learned how to feed their grand babies through a g-tube. They have watched with awe and pride as their young daughters and sons became the best parents in the world and cared for their little heart babies as if they were born to do it. These ladies have not told me their whole stories, just as I haven't revealed all of mine. We are just meeting each other. I think its calming and reassuring for us to know that we aren't alone.

Thank you so much for sharing with me. If anyone would like me to add a link to your grandchild's website, please let me know as I would love to do that.

Anne