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 ( http://www.caringbridge.org/visit /leightonharper)

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

Anne

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.

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!

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
Delete

Drew's 4th Heart Walk

Every year since Drew was born, he has participated in the Heart Walk to help earn money for the cause, first he was in a backpack, then a stroller, and last year he was one of the VIP’s and got to cut the ribbon at the start of the walk. This year, Andrea received a call from the American Heart Association asking if she would be willing to speak at their Kick-Off at the end of June, but unfortunately had to pass that up since Drew was still in the hospital recovering from his third open heart surgery. That surgery has provided Drew with more energy and stamina than ever before and this year they are hoping that he can walk the whole way. The entire Himmelberger family will participate in the walk and if you are interested in donating for this very worthy cause, please click on the title of this blog above or here to view the pledge page and/or donate.

Thank you for your love and support!

Anne and all the other Heart Grandma's

Purlple Toenails

What a nice weekend I'm having!

Yesterday was my birthday and although I started the day wishing that time didn't have to go by quite so quickly, my mood abruptly changed when Andrea called me on my way to work and both Drew and Ava sang their versions of Happy Birthday to
Grandma. I was in a good mood the rest of the day! Ava told me she wanted to come to my house and Drew told me he wanted me to go to his house. Then, they both wanted to talk to Grandpa which started the whole "why he at work?" and "why you in your car?" and I loved every minute of it. Drew wanted to know what presents I was getting and I told him a bracelet and some wine,which turned out to be true. My boss showered me with Brighton jewelry. She got me two pairs of earrings, a bracelet, a Brighton candle and Brighton mints (hmmm is she hinting at my breath, maybe?) My sweet co-worker gave me a Brighton necklace and bracelet. I was so touched at all the attention and that they remembered that I love Brighton. One of the reasons is that the Brighton family has a heart baby, an adult now who is doing great, and they donate quite a bit to different Heart Foundations. Most of their jewelry, purses, etc. have hearts on them for that reason.

I heard from my whole family on my birthday, which is the best gift in the world. My mom, who is 82 and legally blind just started a ceramics class at her local senior citizen center. She sent me her first completed project. Two angels kissing. When she was much younger her ceramics projects were perfectly completed, this one has little flaws all over which makes it that much sweeter to me. (Don't tell her about the flaws, please, she can't see them.) My dad and step-mom came by my office with a beautiful bracelet for me. Tomorrow Tommy and Lisa, my dad and Maria are taking us out to dinner. I guess turning 55 is a milestone, because I can't remember getting this much attention for a birthday in a long time.

Today Steve and I are going on a relaxing day of movie going, lunch and dinner out and then a night at the local Hyatt in Valencia. Not too dramatic, but hey, we will sleep in a king size bed and that is enough to have us both excited. Anyway, I just realized that my toenails are still purple. When Drew and Ava were here a few weeks ago, I was getting a pedicure and I asked Drew what color I should get on my toenails. He replied, "Purple, thats my favorite color." So, of course I got purple and they are still purple. Hmm... I hope the Hyatt crowd doesn't laugh at me.

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

Heart Surgery Boys are Good Swimmers...

Well, what a wonderful Labor Day weekend we had! I actually had all of my children, son-in-law and grandchildren under the same roof for a while on Monday. We also had Uncle Tom, Aunt Lisa, Grandma and Grandpa Oddone, and assorted friends under it at the same time too, so very fun, very hectic and very exhausting, but the best kind of exhausting. Thanks, Lisa for all your help! My sweet sister-in-law drove all the way from Pasadena to play with and help take care of the kids on Saturday and then came back again on Monday to visit and help some more. Uncle Tommy was no slacker, either, he went to the beach with us, gave both kids their baths afterwards and even rinsed out Drew's little underwear. He taught both kids to play wheelbarrow. Ava cried when they left Monday night, she loves them so much! Auntie Rachel gets kudos, too. She met us at the beach, basically took over the care of the kids, and barely reacted when Ava had a little accident (the unmentionable kind) on her cute little beach dress.

Drew is doing very well and recovering in mind and body from his last surgery. His stamina and activity level is higher than ever before and its wonderful to behold, although I'm sure the Himmelberger household is going to have some adjustments to make with his new joy of running, hopping, dancing and generally giving his sister a run for her money in the activity arena. He learned to swim right before visiting us and told me that, "Heart surgery boys are good swimmers." He shows his scar to just about anybody that asks to see it or mentions that he is a brave boy. He really seems to wear it as a badge of honor, as he should! I hope that he will always be proud of his scars and all he endured because he indeed is a brave boy.

Another cute story: When we were taking care of Drew and Ava over the weekend I was making sandwiches to take to the beach with us. I had some pepperoni out and both kids kept asking me for it. I gave them each two at a time, thinking it was too spicy for them, but they kept coming back for two more and two more. After a few minutes of this, Drew came up to me and said, "Grandma, come here, I have to show you something." As any good grandma would do, I followed him. He led me into the bedroom where my daughter's fresh water fish tank is and as Ava was dropping in one more piece, he said, "Look, we shared with the fish." They had pulled a chair over to the tank in order to open it and dropped in about 8 pieces of pepperoni and a few chunks of cheese.

"Grandma, let's go to a meeting!"

Today we had the glorious pleasure of having our grandchildren all to ourselves. Their parents took off for a well deserved 4 day cruise. They both turned 30 this year and after going through Drew's recent heart surgery and all that came before hand and afterwards, they had much to celebrate and a lot of earned relaxation coming to them. I am so honored that they are trusting us with such precious cargo and really take it as a testimony that they don't think I''m as old and senile as I sometimes think I am. I'm sure it helps that Drew is down to only two medications now, not so much to keep track of anymore.

Here's a cute story: We were pretty much relishing in spoiling the kids rotten today and were keeping busy with videos, games, play-doh and Hungry Hungry, Hippo. They both helped me make a batch of brownies and then a homemade pizza for dinner. They ate so much of the ingredients, I was surprised that they ate dinner at all, but they did. Their mother, my daughter, is so active in church and children's heart organizations that a normal day for the kids is tagging along to these functions as well as swimming lessons, grocery shopping, Gymboree, etc. We thought they would enjoy a whole day at home and we didn't even get them out of their pajamas until well into the afternoon. At about 4:00, Drew came up to me and said, "Grandma, lets go to a meeting." I asked him what kind of meeting he wanted to go to and he said, "I don't know, just a meeting... maybe a toy meeting."

Tomorrow we're taking them to the beach!

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.