The Wedding, Miami and Boston

The Wedding

Here is a picture of my grandmother, father, sister and me at my cousin's wedding. I'm standing next to my dad and my sister Chrissy is sitting next to our grandmother. Megan, my beautiful niece, is taking the photograph. :-) Unfortunately, the pictures of all of us didn't turn out well. :-( I hope to have some color pictures after a while. Megan took the pictures deliberately in black-and-white to fulfill a project in school.

So Grandma made it to the wedding and she even danced at the wedding. Megan got a picture of that, too, but sadly it didn't turn out well.

Crystal was gorgeous. I think brides always look lovely, but Crystal was clearly in love with Mike and the look on her face made her more beautiful than ever. I wish those two lovebirds all the best. It was very nice of them to share their special day with us. I can't remember the last time we had so many family members gathered together . . . I guess it was for Grandma's 80th birthday, but Crystal's family couldn't make it to that. So this is the first time we've had that many members of these families together. It was very special.

Miami Conference (see www.congenitalheartdefects.com's calendar for more information about this conference)

Since I've been back from Mississippi I've been very busy preparing for the conference I'll be speaking at in October. It is going to be so wonderful. I just found out that there is going to be a very special little boy performing for the group during lunch. The piano player is a brother to a little boy with hypoplastic left heart syndrome. I'm so excited that I'm going to have a chance to meet this little boy. I met his father in Philadelphia over a year ago. At that time I had a chance to hear Gene talk with pride about his two boys. Now I'm going to have a chance to meet them and his wife. It will be great to see the whole family under such happy circumstances.

Boston Conference (go to the www.congenitalheartdefect.com calendar for more information on this conference, too)

I've just finished reading an email from Mary Kay Klein, the organizer of the Boston conference for adults with congenital heart defects. Mary Kay has been helping to organize the conference in memory of her daughter Karen. I am so happy that I'm going to have a chance to attend this conference. Now that I see Alex becoming a young man, what these people have to say is going to be even more meaningful to me than it would have been 10 years ago. While I don't know if any of the speakers will be adults with hypoplastic left heart syndrome (the heart defect Alex has), I'm sure many of them will also have complex heart defects similar to Alex's. I'm also certain that the challenges they have faced are ones Alex will also have to face someday.

Most importantly, I will have a chance to hear how some people have survived having a heart defect and even thrived. It is such an inspiration to listen to these people. I met Karen years ago when she visited Austin to see a heart friend she'd made on the Internet. My friend, Jane Hunt, and I had gone to a support group meeting at Brackenridge Children's Hospital and we couldn't wait to meet this young lady. We then took Karen and her friend, Anthony, where they needed to go after the meeting. That gave us a few minutes to talk to them away from the others at the meeting. They acted just like other college kids we knew.

Mary Kay wrote for The Heart of a Mother and her husband Ted is writing for The Heart of a Father. I'll be bringing my autograph copy of my book for Mary Kay to sign. So far I've gathered quite a few signatures. I can't wait to finish The Heart of a Father so I can do likewise with the dads I have a chance to meet.

I hope you all had a great weekend!

Sincerely,

Anna Jaworski

HOF Update

I know I just posted a note about what I'm doing regarding public speaking and Baby Hearts Press, but I thought there might be some of you out there excited to hear about how The Heart of a Father is going.

Having my dad, Bob Daigneault, help with this project has made a world of difference. Because of some technical problems, most of the electronic versions of the essays were lost. I was devastated to discover this. We sent the word out to the dads and some were kind enough to send us what they had. Of course I had printed versions of everything I'd already worked on, but it was starting to look as though I was going to have to retype a lot of pages.

Dad went with me to Fry's to look at scanners. I got one for the business and last week we started scanning in an essay. Dad helped me get started and left. I don't know what I did wrong, but even though I seemed to scan the pages in correctly, when I saved them, something odd happened. I saved each page individually and gave it the author's name and page number. I don't know why the scanner took Page 1 and saved it 5 times in a row -- as pages 1-5.

Realizing how frustrated I was after a long time of fighting with the machine, Daddy came to the house and took it away. I don't know how he worked his magic, but somehow he was able to scan and save Jim Larson's 13-page essay in two PDF documents. They look great! He's already sent them to Jim for updating and revising. We're on our way!

I think what has taken us the longest amount of time to do so far has been housekeeping types of activities. We've been trying to reconnect with all the contributers and many email addresses are no longer any good. We've been trying to clean up our YahooGroup listserv, too. There are people on there we don't know and we're trying to figure out who is who and why they're there. There's the whole issue of who has sent in his permission form and essay and who wants to update what he's sent. All in all, it's very slow going! The good news is: it's going.

Dad made a timeline for us when we started working on this project and so far we're doing what we hoped to be doing. I'm happy to announce that thus far Daddy approves of the developmental editing I'd already done and he is looking forward to doing the line editing. I already did a lot of copy editing when I did the developmental editing, but Daddy is going to make the book more consistent.

At our weekly meeting we took a look at all of the wonderful pictures, videos and music that the dads have sent us thus far. We are so excited about this project! It really is going to be a special eBook experience. Stay tuned for more updates as we continue to work on this very special project. And if you are a contributor and you haven't heard from us, it's because we can't contact you. Please contact me! My email is jaworski@vvm.com. Even though some essays have been accepted for publication, we still want to touch base with everyone and let everyone know what's going on. We appreciate people helping us spread the word!

Sincerely,

Anna Jaworski

A Wedding, A Speech and Toastmaster Friends

Tomorrow morning I will be flying to Mississippi to attend my cousin's wedding. I hope to have some good pictures to post sometime after I get back. My aunt is going to be the photographer for the wedding and I hear she is wonderful.

I hope C.J. and Michael have a beautiful day for their wedding. The weather predictions are not as favorable as we'd like, but then again weathermen (or women) are not necessarily known for their accuracy. My Aunt Terry has wisely decided that a tent would be in order, so I'm sure we'll be covered.

This wedding was an excellent excuse for my grandmother and me to go shopping! Having just been sent home from the hospital days earlier, I really didn't think Grandma would be up for a big shopping excursion, but I should have known better! Six hours after we started out, Grandma's purse was a little lighter and my bunion was screaming at me!

Seriously, we had a lovely lunch and then had a wonderful time finding Grandma the "perfect" dress for the wedding. Leave it to Grandma to not only find ONE perfect dress, but TWO! Now tomorrow she will have the difficult task of deciding which lovely dress she'll wear.


The past several days have been very busy planning for this trip, shopping and working on my speech (oh! and being a mom to two busy boys and homeschooling Alex!). I gave Part II of a three-part speech that I started last week at my local Toastmasters Club, Texas Stars Toastmasters. The three 10-minute speeches will add up to the one 30-minute speech I'll be giving in Miami next month. So far my Toastmaster friends have been awesome. Their advice has been right on and their comments are boosting my confidence in what I've put together. This is making me even more excited about going to the conference!

I really believe everyone should join Toastmasters at some point in his or her life. It has been such a blessing to me to be able to practice my speaking and leadership skills. I also feel that I have made some life-long friends in the process. I think one of the things I like most is that, in my experience, Toastmasters are there -- not only to improve their own abilities -- they are there to help and encourage others. In that spirit, Texas Stars Toastmasters will have their regularly scheduled meeting next week and then a group of them will go to a local restaurant for dinner and an opportunity to help me by listening to my 30-minute speech uninterrupted. I'm even going to bring the dress I plan to wear to the conference to get their feedback.

I am so excited about the opportunity to go to another CHD conference and to meet new CHD parents. I'm thrilled with the way the organizer for this event has worked with me. She has been wonderful about explaining exactly what she wants in me as her speaker. That has made planning so much easier and fun! I will post some pictures of the event on the website when I come back.

That's all for now. I feel lucky to have something wonderful like a wedding to look forward to, a goal to achieve (writing a great speech) and friends along the way to help me get where I need to be. Thanks Texas Stars Toastmasters!

Anna

Grandma

I know this blog is supposed to be about Baby Hearts Press, but everyone needs to know that BHP is a family-owned and run business. Therefore, if something is happening to a dear family member, it will affect the business. That is exactly what happened last week.

Last Wednesday, my grandmother went to the Emergency Room because she was having trouble breathing. She had already been diagnosed with atrial fibrillation and was on Coumadin, so we were already concerned about her. For months she has become increasingly more out of breath, but complaints to her doctor went unheard. Finally, fearing for her life, she called my father and he quickly went to her house to hand deliver her to the ER.

Meanwhile, my husband called down to the ER to let them know Grandma was on her way. We got VERY lucky. There was hardly anyone needing to be seen when she arrived, so we went straight back. I live only a few minutes from the hospital, so I met them there.

It didn't take long for the doctor to determine that Grandma was in congestive heart failure. Because of Alex's heart defect, I knew what that meant and was able to help Grandma anticipate what was coming next. I told her that when Alex's CHF was diagnosed, the first thing they did was put him on lasix. Not surprisingly, they did the same thing to Grandma. Then Grandma, just like Alex, was admitted to the hospital. It was kind of like deja vu.

For six days we watched, worried, prayed and stayed optimistic. Once the lasix started working, Grandma's sense of humor returned. She was the ideal patient. She gave blood without complaint and let them do whatever they felt they needed to do. She was as upbeat as she could be. I was proud to be her granddaughter.

The next major concern with Grandma was damage done to her kidneys because of the agressive lasix therapy. Grandma's kidneys were already starting to have problems and she was already being seen by nephrology, but now things became more critical. There was concern that she might have to go on dialysis. It was a wait-and-see game for a while -- something we parents of children with heart defects know all too well.

Yesterday the good news finally came: Grandma was doing better and could go home! Her kidneys were starting to heal and the doctors felt she would heal better at home. She was relieved, as were Dad and I. We couldn't wait to pack her up and take her where she belonged.

The last week was another good example of how families can pull together during a crisis. Frank was so wonderful about letting me be up there as much as I could. The boys took care of the kitchen and laundry. We all went to visit her one day as a family. I'd like to think that visit really cheered her up. Dad and I tried to manage the schedule so that somebody would be with Grandma at all times except when she was supposed to be sleeping. We had a workshop we had to go to on Saturday and my sister and niece drove all the way from Houston to spend Saturday with Grandma. It really was heartwarming to see how everyone pulled together to help Grandma as much as possible.

I think that all of us were better prepared with what to do because of Alex's stays in the hospital. We know what it's like to have a loved one in the hospital. We now know what to do to be a good advocate for the patient. Dad and I started a journal with information we were being given when we started getting conflicting information from some of the different individuals she was seeing (she was at a teaching hospital -- so she had a huge team of people overseeing her care). By the time Grandma left, everyone, including my sister and niece had taken a turn writing notes in Grandma's journal. I'd like to think that the consistency which we demanded helped her to get better faster.

No one lives forever, but we knew it wasn't Grandma's time to go yet. I'm going to include a picture of her playing pool at my house with the family. Usually she runs circles around everyone. She calls bingo twice a week at two different nursing homes where she volunteers. She belongs to her church's Altar Society. She is faithful about going to church every week -- and with getting her hair done once a week! :-) But she also has something very serious coming up which she didn't want to miss: my cousin is getting married in September. She has to dance at that wedding!

Thanks to all of you who knew what was happening to Grandma and took a moment to say a prayer for her. She's doing great and I might even have a picture to post of her dancing at C.J.'s wedding in the next month.

Anna

Hastings, San Francisco and Miami Conference

Greetings from Central Texas! I am so excited to be home! I have three different things I'd like to share.

Hastings

There is a bookstore in Killeen, Texas called Hastings which my dad visited. He brought copies of my books and asked if they would like to carry them since I am a local author. They very graciously agreed to carry them, so if anyone is looking for My Brother Needs an Operation or The Heart of a Mother in Central Texas, you can get them from that bookstore. They are in the Local Authors section right near the front of the store. Thanks, Hastings!

San Francisco:

We had a lovely week in San Francisco in August. We had a chance to visit with Nancy and J.D. McCain which was wonderful! J.D. is contributing an essay in the Grandfathers' Chapter of The Heart of a Father and we had some time to talk about his contribution over a nice lunch at Swiss Louis Restaurant. J.D. and Nancy McCain are responsible for many of the quilts that have been created for the Congenital Heart Defect Awareness Quilt Project. There will be a Quilt Show in Texas in the fall, so check back here for more information about that in the future!

In S.F. we visited Pier 39 (see pic above) and two different aquariums (see pic above). We also visited the wax museum, a couple of art museums, including the Legion of Honor and we also went to the Maritime Mueseum - which was really neat! The weather was cold (for a Texan - hence the jacket in the pictures), but we had two lovely, sunny days.

Miami Conference:

Things continue to progress regarding the Miami Conference. We might even have the brother of a boy with HLHS performing at the conference. He is a musical genius and has been featured on television and in some Florida newspaper articles. I'm eager to see how that works out.

I've been working on my keynote address and am excited by how it's coming together. It's hard to believe that Alex turned 13 on the eleventh of August. I'm now the mother of two teenagers. Alex wasn't expected to make it to age 5. To see that he's made it to 13 and is going strong is quite an accomplishment.

More to come soon!

Anna

Exciting News!

It's official! Today I received the faxed contract from Pepper Adair and I'll be speaking at the American Heart Association Heart Heroes conference on October 6, 2007. I'm very excited about that. Anyone from the Miami area who is interested in attending this conference, please let me know at jaworski@vvm.com and I will have an invitation sent to you. We need a headcount for the conference because, for one thing, a complimentary copy of The Heart of a Mother will be given to each family registered for the conference. And get this -- the cost of the conference to participants -- free! You can't beat that! There will be a number of excellent speakers discussing relevant topics for congenital heart defect families. Once I have the schedule, I'll post it to my website (www.babyheartspress.com).


(Alex on stage for spelling bee)


(Alex at the cookie walk)

I said I would write about Alex's Harry Potter experience. It was interesting. We went to the mall because Borders had a special extravaganza the whole night long. There was to be a spelling bee, a cookie walk, face painting, etc. Alex was very excited. Things didn't work out completely as planned, but the most important thing was that we got our books and got home by about 12:30. Alex, being much younger and more curious, stayed up until 8:30 a.m. reading the book. I had awakened around 7 a.m. to finish off where I started. I couldn't keep my eyes open past the second chapter. I was amazed to learn that Alex had already finished the book!

Alex was a perfect gentleman. He didn't let any of the information slip, but as soon as I finished reading the book, we hid out in Frank's office with the door closed so we could discuss the details. Frank and Joey finished the book within a couple of days and now we're free to talk about whatever we want to -- except with certain friends who aren't quite as voracious in their reading as the Jaworski family is.

More exciting news: we've planned a trip to San Francisco and are eager to catch up with some other heart family friends we know there. Plus, this is the first time for the boys to visit the city. We're planning on going on the trolley, visiting Alcatraz, walking along the pier, touring the Ghirardelli Chocolate Factory and viewing the Golden Gate Bridge at sunset. We can't wait! Alex is excited about visiting Chinatown where he hopes to find a cool Chinese dragon to add to his collection. The boys are also looking forward to authentic Chinese cuisine.

Last bit of news:

I was finally able to get in touch with the lab which did Alex's last blood draw and . . . 146,000 platelet count! In fact it was so close to normal, that's why they never called or emailed me! I'm so relieved. I don't know why Alex had that extreme dip in his platelet count earlier this year, but I'm hopeful that now his count is normal again, we can decide what the next best course of action for Alex will be. More on that once I have some answers.

Sincerely,

Anna Jaworski

Rick Riordan and Alex

I have been itching to write this blog for days now! Alex and I had an awesome opportunity just recently to meet San Antonio children's author Rick Riordan. He is the author of three childrens' books: The Lightning Thief, The Sea of Monsters, and his most recently published book, The Titan's Curse.

Luckily for Alex, he has many friends who are avid readers, like he is. It was because of Jen, Luke and Gretchen Oliver and Cristy, Kyle and Ryan Wade that we found out Rick Riordan was coming to Round Rock, Texas for a book signing. Alex and I had not heard of this fabulous author yet, but trusting our friends' opinions, we decided to tag along with them to meet him.

It's a good thing we got there early! A busload of children from El Paso also came to Round Rock to meet him, all wearing the typical Camp HalfBlood t-shirts -- bright orange in color! Although there were chairs set up for people to hear Rick Riordan share a reading from his newest book, there were certainly not enough seats for the huge crowd which assembled in Barnes and Noble.

Rick's first two books are out in paperback, and since we hadn't read his books yet, I agreed to buy those and have him autograph them for Alex. While we waited to meet and hear the author, Alex started reading the first book. I quickly learned that I wasn't going to make it out of the bookstore without also purchasing the third book in the five-part series known as Percy Jackson and the Olympians. I'm glad I went back and got the newest book!

Alex breezed through all three books within a couple of days. I've already read the first book, myself. They are awesome books! Now Alex can't wait to read the fourth book -- which Rick Riordan is editing right now. We've checked out his website: www.rickriordan.com -- and this morning I read his blog. He is easily our newest favorite children's author.

I got a picture of Rick Riordan with Alex after he finished autographing our three books, but I took it with my camera phone and so the quality is not top-notch. The memory of listening to this man read from his book and the joy of discovering a new author and favorite new series; however, was thrilling. As soon as I can figure out how to put pictures up with these blogs, I will.

Tomorrow's post should be just as exciting for me to write about. Alex and I have already reserved our copies of the newest Harry Potter book which is due out tonight! We are so excited! Our local bookstore, Borders (formerly Waldenbooks) is having an extravaganza in the mall tonight. I believe it starts at 6 p.m., but we won't get there until swim practice is over for Alex and Joey. I'm sure we'll just eat at the mall so we can take advantage of all the festivities. I'll make sure I take my digital camera tonight so I can capture some of the magic to share with all of you tomorrow.

Until then . . . I hope your day is magical and you discover something amazing today, too.

Sincerely,

Anna