Over eight years ago I envisioned a book by men affected by congenital heart defects that would be a companion to The Heart of a Mother. I started with a handful of essays from men I had come to know over time, some had wives who had contributed to The Heart of a Mother, others were simply concerned fathers or grandfathers who found Baby Hearts Press and me. Now, finally, I believe we are coming close to finishing this project.
I have thought in the past that we were close and always something seemed to get in the way. This time last year I thought we would have the book out by Christmas. Then my grandmother fell ill, moved in with my father, got better, made it to my cousin's wedding, became sick again and then passed away in February. It has been a very difficult year for me. This Thanksgiving will be the first Thanksgiving in 8 years where Grandma isn't eating dinner at my house. My only consolation is knowing that she will be with us in spirit and that having my sister and her family, my family and my father present will kind of be a tribute to her. If it weren't for Grandma, none of us would be here. :-)
Dad is working very hard on the book with me since both of us are eager to complete this awesome project. We're still waiting on 3 essays but now I feel certain they will come. I have to believe they will finally be completed because I don't want to publish this book without them.
So that is where we are now. All but three chapters are completed. We have authors lined up to write the Introduction, the Preface and the Foreword. It's been fun reconnecting with the authors, sharing our progress with them and getting some updates. Our children are so beautiful and inspirational. The stories we have to share are going to help others in the CHD community. I only hope that Dad and I have done justice to the words these brave men have shared with us and kept their voice their own. One of my ultimate goals with the books I publish is to keep it real.
I was once interviewed by a reporter for Woman's World. I told her she could publish my story provided I got to okay the final version of the article. She had "Hollywood"ized my story creating a false history of what really happened. I wouldn't allow it to be published and I wondered how many of the stories I saw in the supermarket were distorted like she tried to distort mine. Our stories have enough drama in them. We don't need editors who are going to change what really happened just to sell more books or magazines.
These stories are written by real men. They may not be professional writers by trade, but they have opened up their hearts to share some of the most difficult moments of their lives -- or maybe some of the best moments of their lives. The book covers the gamut -- from births to celebrations of life to descriptions of the unthinkable -- losing a child. I look forward to sharing them with you all soon.
Sincerely,
Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS); wife to Frank
author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
editor and contributor to The Heart of a Mother
co-editor of The Heart of a Father (in progress)
www.babyheartspress.com
www.congenitalheartdefects.com
Friday, November 7, 2008
Tuesday, October 21, 2008
AHA Heart Heroes Conference -- Panama City, Florida
Here is a photo of my father and me at the American Heart Association Heart Heroes Conference in beautiful Panama City Beach, Florida. Professional photographer Jordan Owens was on hand to take photos of all of the families. What a treat!The conference was fantastic. I had a chance to see some former AHA members (Pauline and Gary) and Alex's former cardiologist, Dr. William Blanchard. A real treat was serving on a panel discussion with Dr. Blanchard and having some time to talk to him about Alex.
What an awesome audience! I really felt like all of us connected. During the breaks, I had a chance to meet many of the families and to hear many of their stories. Most notably, there was a mother there of triplets -- all with Tetralogy of Fallot! Two of them were at the conference and they looked healthy and happy (one was visiting with Grandma). Naturally, I saw a number of precious babies and darling toddlers. It does my heart good to see so many happy, healthy children. I know there is so much hope for these little ones.
I think the comment that made me the happiest came from two women who came up to me at the end of my Planning My Bright Future speech. One of the ladies told me that she had been trying to encourage her friend to let her daughter dance. After they heard me talk about Tanya and Donna, this mother decided to let her daughter, with Tetralogy of Fallot -- just like Tanya! -- take dance lessons. :-) That made my day.
It is always fascinating to me how many of us share similar stories. One mother came up to me in a break and mentioned how her child was also originally diagnosed with cystic fibrosis -- not once, but twice! Then the real diagnosis became apparent -- hypoplastic left heart syndrome. I think the reason we parents feel such a bond is because of the similarity of our stories, our emotions and the roller coaster ride we enter once our children are diagnosed.
I hope I am asked back to speak at the AHA Heart Heroes conference next year -- which I hear will be in sunny Orlando, Florida! I encourage all of you Floridians to put this conference on your calendar. Pepper Adair and her able group of helpers really know how to put on a terrific conference and I can guarantee you that a good time will be had by all.
Sincerely,
Anna Jaworski
Thanks to professional photographer, Jordan Owens for the photo of Dad and me! To schedule a sitting with Jordan, visit her website: http://www.jophoto.us
Wednesday, October 8, 2008
American Heart Association Conference
I am so excited to announce that I will be the keynote speaker at the American Heart Association Heart Heroes Conference in Panama City Beach, Florida on October 11, 2008. The title of my speech will be Raising a Child with a Congenital Heart Defect. It's the same title as last year's speech in Miami, but I wrote a new speech just for the occasion. Last year my speech was more didactic. This year my speech is more storytelling -- which is what I do best!
I'll also be giving a speech for another session. The title of this speech is Planning My Bright Future. I revised the speech I gave last year to include some new information. It's one of my favorite speeches to give because I tell some of my favorite stories in it. I love sharing success stories of people I've had the chance to come to know in the CHD world.
I'm eager to make some new friends in Panama City Beach. Attending heart conferences really keeps me connected to the CHD world in a special way. Every time I go to one conference, I find myself seeking out other conferences. I wondered if after Alex was older I would still think about his heart defect. I don't dwell on it like I did when he was younger, but I find myself wondering how my heart friends are doing and hoping that they are leading the same good quality of life that Alex is now. I guess attending these conferences makes me more hopeful than ever.
I'll also be giving a speech for another session. The title of this speech is Planning My Bright Future. I revised the speech I gave last year to include some new information. It's one of my favorite speeches to give because I tell some of my favorite stories in it. I love sharing success stories of people I've had the chance to come to know in the CHD world.
I'm eager to make some new friends in Panama City Beach. Attending heart conferences really keeps me connected to the CHD world in a special way. Every time I go to one conference, I find myself seeking out other conferences. I wondered if after Alex was older I would still think about his heart defect. I don't dwell on it like I did when he was younger, but I find myself wondering how my heart friends are doing and hoping that they are leading the same good quality of life that Alex is now. I guess attending these conferences makes me more hopeful than ever.
Friday, July 18, 2008
Skylar Got a Heart
Dear Friends of the Heart:
The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.
A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.
Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.
One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.
What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.
There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.
Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?
I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.
Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.
Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.
Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.
Don't take your organs to heaven. Heaven knows we need them here. Spread the word.
Peace be with you all.
Anna
The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.
A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.
Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.
One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.
What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.
There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.
Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?
I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.
Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.
Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.
Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.
Don't take your organs to heaven. Heaven knows we need them here. Spread the word.
Peace be with you all.
Anna
Friday, May 16, 2008
Growing, Changing and Miracles
Dear Friends:
May 16, 2008 was a momentous day for the Jaworski family. Last week Alexander and I attended the Texas State Technology Students Association competition in Waco, Texas by invitation of robotics coach, Sam Saenz. Mr. Saenz hosted the 2008 Robofest Cypress this year and I was fortunate enough to be his emcee while Alexander competed in the Sumobot portion of the competition. He was taking his students to this state competition and wanted to meet with us again.
The competition was truly remarkable. It's amazing to me how well middle school and high school students can do when given the right motivation, instruction and opportunities. We saw a few robotic entries, enjoyed seeing improvements made upon the Robofest entries we had seen just the prior month and reading about the students' experiences with their projects.
Perhaps the most wonderful thing to happen to us, though, was when we met with a representative of Texas State Technical College. She was friendly and gave us some information and then she told me that as a homeschooler, Alex could enroll in their dual-enrollment program -- and he wouldn't have to wait until he was 16! Not only that, TSTC has a Robotics program AND a Nanotechnology program. Here is a picture of the entrance to TSTC:
It took us a little while to find TSTC, but now that we know where it is, it will be a cinch to find it again. It's right off of I-35 near the Department of Public Safety building off of Craven. I mistakenly thought it was close to the Unitarian Universalist church we used to attend, but that is McLennan Community College. So I took the scenic route to get to TSTC. :-)
Texas State Technical College is huge! I had no idea there were so many buildings there. We went to the John Connelly building first and then we were quickly redirected to the building we needed to go to. Everyone giving us information was so friendly and inviting. There were school buses on campus because some of the schools had brought students to the college for something akin to an open house.
Alex met with Lucy Price in the administration building and she talked with us for a while. After finding out what Alex's ACT score was (he took the test when he was 11), she asked the Registrar if Alex could be admitted. I had neglected to make Alex take the writing portion of the ACT, so I had signed him up to take the ACT again, this time with writing, in June. Ms. Price said that would be fine and it looks like it should not be a problem for Alex to start school at TSTC in the fall, but she wanted us to meet with a counselor to make sure Alex had all the prerequisites needed. She took us to meet Karen Armstead who was a complete delight.
She and Ms. Price were professional yet friendly. They treated Alex with respect. He really appreciated that. Now he is about as tall as I am. I can't believe my baby is growing up and changing into an adult. I can't believe that next fall I might be taking him to TSTC for his first college course. This all seems to be happening way too fast.
On Thursday we will go back to TSTC. Alex will take their entrance exam (math, English and writing) and that will let us know if he will be officially admitted. At 1:00 we will meet with the head of the Nanotechnology department. Alex is excited about that. Around 2:15 we will meet with the head of the Robotics department. It will be interesting to take a tour of the school and talk with these people. I can't wait to see if Alex really fits in at this college.
Growing and changing . . . if we're lucky our "heart" children will grow and change. One thing I didn't write about (because of my hiatus from writing while grieving for my grandmother) was a very important series of phone calls I had early this spring. For the last 18 months we have been watching and evaluating Alex to determine if he is going to need additional open-heart surgery or possibly a catheterization to try to repair his heart. For 18 months I've been on pins and needles wondering if at any time we'd be driving to San Antonio for Alex to have surgery with Dr. John Calhoon -- the man who worked on Alex's heart twice and saved his life. For 18 months I've put some projects on hold knowing that my life could change, literally in a heartbeat.
Early this spring we met with Alex's cardiologist Dr. Patrick Finnigan in Austin. Again he looked Alex over but this time he exclaimed over how tall Alex had become! I think he is now as tall or taller than his cardiologist. Alex is still thin, but he looks good. Most people would never guess he has a heart defect unless they saw him running around shirtless. Dr. Finnigan sent all of Alex's records to Dr. Calhoon and they had a huge meeting with all of their colleagues at both facilities (Children's Hospital in Austin and University Hospital in San Antonio) and the consensus was: Alex is doing great. Let's not mess things up. Let's look at him again when he's around 18 years old!
Eighteen years old! I was thrilled! Now of course we'll still have visits with the cardiologist every six months to check hish heart, but provided everything looks the same, no intervention will be needed for years. This is a huge relief. Dr. Calhoon believes that if Alex continues to do as well as he has for the last 13 years, by the time he really needs intervention, technology will have caught up to his needs and we'll have something available to help him.
Who knows. As a future graduate of Texas State Technical College specializing in Nanotechnology, Alex could actually contribute to finding something to help himself, and others with congenital heart defects. If that's not a miracle, I don't know what is.
Peace,
Anna
May 16, 2008 was a momentous day for the Jaworski family. Last week Alexander and I attended the Texas State Technology Students Association competition in Waco, Texas by invitation of robotics coach, Sam Saenz. Mr. Saenz hosted the 2008 Robofest Cypress this year and I was fortunate enough to be his emcee while Alexander competed in the Sumobot portion of the competition. He was taking his students to this state competition and wanted to meet with us again.
The competition was truly remarkable. It's amazing to me how well middle school and high school students can do when given the right motivation, instruction and opportunities. We saw a few robotic entries, enjoyed seeing improvements made upon the Robofest entries we had seen just the prior month and reading about the students' experiences with their projects.
Perhaps the most wonderful thing to happen to us, though, was when we met with a representative of Texas State Technical College. She was friendly and gave us some information and then she told me that as a homeschooler, Alex could enroll in their dual-enrollment program -- and he wouldn't have to wait until he was 16! Not only that, TSTC has a Robotics program AND a Nanotechnology program. Here is a picture of the entrance to TSTC:
It took us a little while to find TSTC, but now that we know where it is, it will be a cinch to find it again. It's right off of I-35 near the Department of Public Safety building off of Craven. I mistakenly thought it was close to the Unitarian Universalist church we used to attend, but that is McLennan Community College. So I took the scenic route to get to TSTC. :-)
Texas State Technical College is huge! I had no idea there were so many buildings there. We went to the John Connelly building first and then we were quickly redirected to the building we needed to go to. Everyone giving us information was so friendly and inviting. There were school buses on campus because some of the schools had brought students to the college for something akin to an open house.
Alex met with Lucy Price in the administration building and she talked with us for a while. After finding out what Alex's ACT score was (he took the test when he was 11), she asked the Registrar if Alex could be admitted. I had neglected to make Alex take the writing portion of the ACT, so I had signed him up to take the ACT again, this time with writing, in June. Ms. Price said that would be fine and it looks like it should not be a problem for Alex to start school at TSTC in the fall, but she wanted us to meet with a counselor to make sure Alex had all the prerequisites needed. She took us to meet Karen Armstead who was a complete delight.
She and Ms. Price were professional yet friendly. They treated Alex with respect. He really appreciated that. Now he is about as tall as I am. I can't believe my baby is growing up and changing into an adult. I can't believe that next fall I might be taking him to TSTC for his first college course. This all seems to be happening way too fast.
On Thursday we will go back to TSTC. Alex will take their entrance exam (math, English and writing) and that will let us know if he will be officially admitted. At 1:00 we will meet with the head of the Nanotechnology department. Alex is excited about that. Around 2:15 we will meet with the head of the Robotics department. It will be interesting to take a tour of the school and talk with these people. I can't wait to see if Alex really fits in at this college.
Growing and changing . . . if we're lucky our "heart" children will grow and change. One thing I didn't write about (because of my hiatus from writing while grieving for my grandmother) was a very important series of phone calls I had early this spring. For the last 18 months we have been watching and evaluating Alex to determine if he is going to need additional open-heart surgery or possibly a catheterization to try to repair his heart. For 18 months I've been on pins and needles wondering if at any time we'd be driving to San Antonio for Alex to have surgery with Dr. John Calhoon -- the man who worked on Alex's heart twice and saved his life. For 18 months I've put some projects on hold knowing that my life could change, literally in a heartbeat.
Early this spring we met with Alex's cardiologist Dr. Patrick Finnigan in Austin. Again he looked Alex over but this time he exclaimed over how tall Alex had become! I think he is now as tall or taller than his cardiologist. Alex is still thin, but he looks good. Most people would never guess he has a heart defect unless they saw him running around shirtless. Dr. Finnigan sent all of Alex's records to Dr. Calhoon and they had a huge meeting with all of their colleagues at both facilities (Children's Hospital in Austin and University Hospital in San Antonio) and the consensus was: Alex is doing great. Let's not mess things up. Let's look at him again when he's around 18 years old!
Eighteen years old! I was thrilled! Now of course we'll still have visits with the cardiologist every six months to check hish heart, but provided everything looks the same, no intervention will be needed for years. This is a huge relief. Dr. Calhoon believes that if Alex continues to do as well as he has for the last 13 years, by the time he really needs intervention, technology will have caught up to his needs and we'll have something available to help him.
Who knows. As a future graduate of Texas State Technical College specializing in Nanotechnology, Alex could actually contribute to finding something to help himself, and others with congenital heart defects. If that's not a miracle, I don't know what is.
Peace,
Anna
Tuesday, May 13, 2008
Healing
Dear Friends:
I believe we are in a time of healing now. Here is a photo from the Our Lady of the Lake University website:
The OLLU president said, "Our Lady still stands." I believe the faith of the community and the fact that this appears to have been a simple accident, and not an aggressive act against the community, will mean that we can heal from this tragedy. I know I contacted some of my OLLU friends and we are all going to do what we can do to help OLLU. My friend, Beren Gaule, went to the university to help provide counseling to those affected by the fire -- which I'm sure was everyone.
Sometimes bad things happen to good people. No one understands that better than the CHD community. And yet, despite having a child born with a "broken" heart, I think those of us in the CHD world also know how very lucky we are. We realize the importance of everyday. We don't take the little things for granted. We appreciate things that others usually overlook.
Perhaps the same will be true for the OLLU community. We always took the university for granted. It had been there for over 100 years. Surely it would always be there. Now we know how lucky we are to have been a part of something so beautiful and special. Maybe now we will cherish it a bit more than we did before the fire. And like the members of the CHD community, maybe the OLLU community will realize that the most important thing is Life. All of the lives of the firefighters and students and faculty were spared. In the CHD world, when one of our children is spared, it makes us realize how very lucky we are.
My prayers and good thoughts go out to both of these special communities.
Love,
Anna Marie Daigneault Jaworski
OLLU class of 1984 - B.A. in Speech Pathology
I believe we are in a time of healing now. Here is a photo from the Our Lady of the Lake University website:
The OLLU president said, "Our Lady still stands." I believe the faith of the community and the fact that this appears to have been a simple accident, and not an aggressive act against the community, will mean that we can heal from this tragedy. I know I contacted some of my OLLU friends and we are all going to do what we can do to help OLLU. My friend, Beren Gaule, went to the university to help provide counseling to those affected by the fire -- which I'm sure was everyone.
Sometimes bad things happen to good people. No one understands that better than the CHD community. And yet, despite having a child born with a "broken" heart, I think those of us in the CHD world also know how very lucky we are. We realize the importance of everyday. We don't take the little things for granted. We appreciate things that others usually overlook.
Perhaps the same will be true for the OLLU community. We always took the university for granted. It had been there for over 100 years. Surely it would always be there. Now we know how lucky we are to have been a part of something so beautiful and special. Maybe now we will cherish it a bit more than we did before the fire. And like the members of the CHD community, maybe the OLLU community will realize that the most important thing is Life. All of the lives of the firefighters and students and faculty were spared. In the CHD world, when one of our children is spared, it makes us realize how very lucky we are.
My prayers and good thoughts go out to both of these special communities.
Love,
Anna Marie Daigneault Jaworski
OLLU class of 1984 - B.A. in Speech Pathology
Wednesday, May 7, 2008
Our Lady of the Lake University Fire
It is with a broken heart that I write a note in the blog today. The beautiful, one-of-a-kind university where I really grew up and went from being a child to an adult caught fire last night. Arson is suspected.
Here is a picture of the university in all its glory:
And here is a picture of it today:
It is inconceivable to me that someone would want to do anything to harm Our Lady of the Lake, any of its students or the beautiful traditions and rituals that are such an integral part of OLLU.
My sister called me last night to tell me OLLU was on fire and it was on television (in Houston). I was on my computer and hadn't watched the news. I was in shock. When I hung up the phone with my sister, I went online and surfed the Internet until I found the story. Tears immediately sprang to my eyes. Part of my past was on fire. My heart sank.
When Alex's heart defect was diagnosed, I called Father John at OLLU to see if he would baptize my baby. Alex hadn't been baptized yet and for us Catholics, baptism is very important, especially when the doctors tell you they're not sure the baby will make it through the night. It just so happened that Alex was admitted to University Hospital in San Antonio the very weekend OLLU was having its Alumni Reunion. It just happened to be my 10th Alumni Reunion, as a matter of fact.
To my surprise, Father John told me that he was too busy to come to the hospital to baptize Alex. He suggested I get our parish priest to do so. Our parish priest was 4 hours away in Gatesville, Texas. Father John wouldn't budge. At first I cried and was distraught. Then I took that as a sign from God that he wasn't ready for Alex yet. I believed that God wouldn't take Alex before I had a chance to baptize him.
Between Alex's first and second surgery, I took Joey and him to OLLU to visit one of my favorite professors, Sister Janet Griffin. When I saw her, I told her about what had happened. She got a look on her face that I remember from being in her class and she told me under no uncertain terms to get myself and my baby to the chapel and baptize him myself. So I did.
Alex is now 13 years old. I baptized both Alex and Joey with holy water from the OLLU chapel. It's hard to believe that was 13 years ago.
I hope all of you will say a prayer for the OLLU community. I'm sure OLLU has touched others like it has me and we will all need to be strong and pull together as a community in order to help it become the glorious university it once was. Burned or not, the heart of the university will live forever as long as alumni, such as myself, remember and cherish that very special and sacred place.
Peace,
Anna
P.S. For more pictures about the fire, you can go to http://www.mysanantonio.com
To see OLLU itself, go to this webpage: http://www.ollusa.edu/s/346/ollu.aspx?sid=346&gid=1&pgid=920
Here is a picture of the university in all its glory:
And here is a picture of it today:
It is inconceivable to me that someone would want to do anything to harm Our Lady of the Lake, any of its students or the beautiful traditions and rituals that are such an integral part of OLLU.
My sister called me last night to tell me OLLU was on fire and it was on television (in Houston). I was on my computer and hadn't watched the news. I was in shock. When I hung up the phone with my sister, I went online and surfed the Internet until I found the story. Tears immediately sprang to my eyes. Part of my past was on fire. My heart sank.
When Alex's heart defect was diagnosed, I called Father John at OLLU to see if he would baptize my baby. Alex hadn't been baptized yet and for us Catholics, baptism is very important, especially when the doctors tell you they're not sure the baby will make it through the night. It just so happened that Alex was admitted to University Hospital in San Antonio the very weekend OLLU was having its Alumni Reunion. It just happened to be my 10th Alumni Reunion, as a matter of fact.
To my surprise, Father John told me that he was too busy to come to the hospital to baptize Alex. He suggested I get our parish priest to do so. Our parish priest was 4 hours away in Gatesville, Texas. Father John wouldn't budge. At first I cried and was distraught. Then I took that as a sign from God that he wasn't ready for Alex yet. I believed that God wouldn't take Alex before I had a chance to baptize him.
Between Alex's first and second surgery, I took Joey and him to OLLU to visit one of my favorite professors, Sister Janet Griffin. When I saw her, I told her about what had happened. She got a look on her face that I remember from being in her class and she told me under no uncertain terms to get myself and my baby to the chapel and baptize him myself. So I did.
Alex is now 13 years old. I baptized both Alex and Joey with holy water from the OLLU chapel. It's hard to believe that was 13 years ago.
I hope all of you will say a prayer for the OLLU community. I'm sure OLLU has touched others like it has me and we will all need to be strong and pull together as a community in order to help it become the glorious university it once was. Burned or not, the heart of the university will live forever as long as alumni, such as myself, remember and cherish that very special and sacred place.
Peace,
Anna
P.S. For more pictures about the fire, you can go to http://www.mysanantonio.com
To see OLLU itself, go to this webpage: http://www.ollusa.edu/s/346/ollu.aspx?sid=346&gid=1&pgid=920
Monday, May 5, 2008
The Kindle, Iron Man and Percy Jackson
Greetings! I plan on updating my blog more regularly than I've been doing. The last six months were very hard with my grandmother being ill and then passing away. It's time to get back on a regular schedule. She would have wanted it that way.
The Kindle
I'm sure most of you reading this blog are technologically savvy and I'm sure you've heard about the Kindle. It's taking the world by storm. I just saw this weekend that Amazon.com has caught up with its orders and now the Kindle is available right away. I read somewhere that it was taking from two weeks to a month to get the Kindle when the supply was short. It's good to know they've caught up.
The Kindle, in my opinion, is going to revolutionize the publishing industry. I am so excited by what this new technology promises. No more huge inventories to have to maintain. This is going to save a lot of trees! No more waiting for days or weeks until a book is delivered to your door -- you can have it in the blink of an eye. No more having to hunt for a dictionary to look up a definition for an unfamiliar word -- the Kindle has a built-in dictionary. What a wonderful tool this can become for college students, or even more importantly, for backpack-laden, sore schoolchildren around the globe. Imagine having all your textbooks in something the size of a paperback book -- and you can highlight in it, take notes and even store additional, supplemental resources there, too. Some backpack companies may feel the pain with the advent of the Kindle.
Many years ago when I was first working on The Heart of a Father, I envisioned an eBook version of the book. I could see us having photos, videos and even music all in a book. I was thrilled to think of what it would look like, feel like and sound like, even though the prospect of learning about all of that was daunting. With the Kindle on the market now, I wonder how that will change the way I see our book? I already discussed this with my marketing vice president and we've agreed we need to make our book available on the Kindle. I'm curious about what exactly that will mean.
As I learn and discover more about this phenomenal publishing format, I'll keep you all posted.
Iron Man
This weekend Alexander and I went to see Iron Man with some friends of his. The movie was excellent. In fact, it was so good, Alex went to see it the next night with his dad. He enjoyed it even more for seeing his dad's enjoyment.
As our children age, it's so easy to step back and step away from them. Their taste in books, music and movies is often different from our own. But I think that's an even more important reason for us to share, share, share.
Homeschooling allows me more opportunities than most parents have for sharing. Almost everyday Alex and I read aloud together. When I was homeschooling Joey, too, I went though a long phase of reading nothing but Newbery books or classics. When Joey left the homeschool, Alex got a twinkle in his eye and said, "Now we can read what we want to read!" I found this very funny, but also on target. His brother is not a lover of fantasy and science fiction like Alex and I are so he wouldn't have appreciated the books we've shared over the last year and a half.
We started with the entire Narnia series. Of course we enjoyed the movie when it came out, too. We read the Snow Spider trilogy by Jenny Nimmo. Then we moved on to the Eragon series (and its movie!). Because of my book club, I was able to throw The Pearl by John Steinbeck in the mix, too. Lately we've been reading the Charlie Bone books.
Hollywood really needs to make some movies based on the Charlie Bone books. They are great. In between all of that reading aloud we also shared books that we read to ourselves -- most notably the Percy Jackson series.
What I loved about Iron Man was his message: It doesn't really matter what you do in life, how rich you are or how famous you become if you don't do something for someone else. This is something that I talk to Alex about a lot. I believe Alex's life has a purpose. His life has inspired so many people. In some ways, Alex is an Iron Man. I found it fascinating how the character's weakness -- and then his strength -- dealt with his heart. Just like Alex.
Percy Jackson
I wrote about Alex and me meeting Rick Riordan months ago. Lucky Alex gets to meet with him again! My friend, Cristy, has graciously offered to let Alex accompany her family to another book signing by Rick Riordan. I am jealous! Joey has a German National Honor Society Induction ceremony the same night at the same time, so I can't possibly go to both.
I'm going to ask Cristy to take a picture and I'll post it on the blog for you all to see. Mr. Riordan really inspired Alex. It was after he met this awesome writer than he came home and really started writing with a passion. Hearing Mr. Riordan say that the hardest thing for him is to actually finish a book was something that Alex could relate to. Now when he gets stuck on his story, we discuss how even famous authors feel the same way and how you just have to slog through it sometimes.
Just recently Alex and his father (Frank) joined a writers' group in Austin. The group meets specifically to talk about science fiction and fantasy writing. Alex came home so psyched after that meeting that I couldn't get him to bed until after midnight! He was too busy editing his outline and a chapter of his book. When he goes to the next meeting, he's bringing two chapters of his book to share in public -- something he's never done before. I'll keep you all posted on how it goes.
I hope all of you have something to be excited about, something to be passionate about and something to share with others today.
Peace,
Anna
The Kindle
I'm sure most of you reading this blog are technologically savvy and I'm sure you've heard about the Kindle. It's taking the world by storm. I just saw this weekend that Amazon.com has caught up with its orders and now the Kindle is available right away. I read somewhere that it was taking from two weeks to a month to get the Kindle when the supply was short. It's good to know they've caught up.
The Kindle, in my opinion, is going to revolutionize the publishing industry. I am so excited by what this new technology promises. No more huge inventories to have to maintain. This is going to save a lot of trees! No more waiting for days or weeks until a book is delivered to your door -- you can have it in the blink of an eye. No more having to hunt for a dictionary to look up a definition for an unfamiliar word -- the Kindle has a built-in dictionary. What a wonderful tool this can become for college students, or even more importantly, for backpack-laden, sore schoolchildren around the globe. Imagine having all your textbooks in something the size of a paperback book -- and you can highlight in it, take notes and even store additional, supplemental resources there, too. Some backpack companies may feel the pain with the advent of the Kindle.
Many years ago when I was first working on The Heart of a Father, I envisioned an eBook version of the book. I could see us having photos, videos and even music all in a book. I was thrilled to think of what it would look like, feel like and sound like, even though the prospect of learning about all of that was daunting. With the Kindle on the market now, I wonder how that will change the way I see our book? I already discussed this with my marketing vice president and we've agreed we need to make our book available on the Kindle. I'm curious about what exactly that will mean.
As I learn and discover more about this phenomenal publishing format, I'll keep you all posted.
Iron Man
This weekend Alexander and I went to see Iron Man with some friends of his. The movie was excellent. In fact, it was so good, Alex went to see it the next night with his dad. He enjoyed it even more for seeing his dad's enjoyment.
As our children age, it's so easy to step back and step away from them. Their taste in books, music and movies is often different from our own. But I think that's an even more important reason for us to share, share, share.
Homeschooling allows me more opportunities than most parents have for sharing. Almost everyday Alex and I read aloud together. When I was homeschooling Joey, too, I went though a long phase of reading nothing but Newbery books or classics. When Joey left the homeschool, Alex got a twinkle in his eye and said, "Now we can read what we want to read!" I found this very funny, but also on target. His brother is not a lover of fantasy and science fiction like Alex and I are so he wouldn't have appreciated the books we've shared over the last year and a half.
We started with the entire Narnia series. Of course we enjoyed the movie when it came out, too. We read the Snow Spider trilogy by Jenny Nimmo. Then we moved on to the Eragon series (and its movie!). Because of my book club, I was able to throw The Pearl by John Steinbeck in the mix, too. Lately we've been reading the Charlie Bone books.
Hollywood really needs to make some movies based on the Charlie Bone books. They are great. In between all of that reading aloud we also shared books that we read to ourselves -- most notably the Percy Jackson series.
What I loved about Iron Man was his message: It doesn't really matter what you do in life, how rich you are or how famous you become if you don't do something for someone else. This is something that I talk to Alex about a lot. I believe Alex's life has a purpose. His life has inspired so many people. In some ways, Alex is an Iron Man. I found it fascinating how the character's weakness -- and then his strength -- dealt with his heart. Just like Alex.
Percy Jackson
I wrote about Alex and me meeting Rick Riordan months ago. Lucky Alex gets to meet with him again! My friend, Cristy, has graciously offered to let Alex accompany her family to another book signing by Rick Riordan. I am jealous! Joey has a German National Honor Society Induction ceremony the same night at the same time, so I can't possibly go to both.
I'm going to ask Cristy to take a picture and I'll post it on the blog for you all to see. Mr. Riordan really inspired Alex. It was after he met this awesome writer than he came home and really started writing with a passion. Hearing Mr. Riordan say that the hardest thing for him is to actually finish a book was something that Alex could relate to. Now when he gets stuck on his story, we discuss how even famous authors feel the same way and how you just have to slog through it sometimes.
Just recently Alex and his father (Frank) joined a writers' group in Austin. The group meets specifically to talk about science fiction and fantasy writing. Alex came home so psyched after that meeting that I couldn't get him to bed until after midnight! He was too busy editing his outline and a chapter of his book. When he goes to the next meeting, he's bringing two chapters of his book to share in public -- something he's never done before. I'll keep you all posted on how it goes.
I hope all of you have something to be excited about, something to be passionate about and something to share with others today.
Peace,
Anna
Thursday, May 1, 2008
Death, Near Death and Feeling Thankful
It is amazing how time can get away from you when you are grieving. I am sorry for taking so long to post to the blog again. It's been a little too painful for me to write, but today I feel the need to write.
The beginning of the year started the way it did last year -- with the completion of Robotics season and heavy-duty swim season. The District meet for swimming is in February so January and February are full of practices, meets and time spent making hotel arrangements and trip arrangements. This year was no different except that Grandma was sick and we kept spending time at the hospital in addition to our already-full schedule.
Joey was actually at his Regional meet at the University of Houston when I got a call from my dad. Grandma was being admitted again. She was not feeling well. I was a little relieved. Alex, Frank and I had visited her that week and she didn't look good. When Frank saw her, he felt she was doing fine and didn't need to go to the hospital, but I was worried.
My sister was supposed to come to the swim meet to cheer on Joey. He was the only swimmer from our whole county who made it to the finals in Houston. When she heard Grandma was being admitted, she drove to Temple instead. I was glad and eager to get on the road myself. Joey didn't know what was going on; I didn't want the news to interfere with his swim. He's hoping to make it to Junior Nationals sometime this year.
By the time I got home from Houston, things were not looking good. My aunt and uncle came from Mississippi. The week was one long roller coaster ride. Things wouldn't look good and then Grandma would rally back, giving us hope that she'd make it out of the hospital and back home with us. She started dialysis. That was brutal. Because her kidneys were in such bad shape, they had to do a series of dialysis treatments. She seemed to do well with the first two, but the third one seemed especially punishing. It was just too much and she had no reserves. She was nothing but skin and bones. A doctor told us that she wouldn't be able to come home to live because it would be too much for one or even two people to take care of her with her needing dialysis several times a week. We knew Grandma would not be happy about that, but still she fought.
They moved her to the floor and we were all relieved that she was in a private room and seemed on the road to recovery. We left for some much-needed rest. When the phone rang at 2 a.m. Frank was the one to answer it. He told me not to worry about anything, he'd go to the hospital to check everything out and call me if I was needed. At 2:30 the call came. I woke up Aunt Terry and Uncle Dean. We rushed to the hospital.
Grandma held on until my sister arrived from Houston. We had a priest come to deliver last rites. He was wonderful and did a beautiful prayer service over Grandma. She would have been pleased. It still seems hard to believe that Grandma left us on February 16th.
Family came from all over the United States. Some stayed with me, my sister and her family stayed with my dad and some stayed at Grandma's house. That was hard for them. I don't know how they did it. When I went to Grandma's house, it felt kind of weird. I kept expecting to see her or hear her voice.
The whole family gathered at my house where we used our pool table to spread out Grandma's generous number of photo albums. The funeral home gave us some 16" x 24" display boards we could use for the visitation. Each of Grandma's children had a board where they put pictures of their branch of the family tree. Then we fixed up two more boards of nothing but Grandma, Grandma and her friends and places she had traveled. How she loved to travel!
In addition to that, we gathered some little momentos to put on display in the visitation room. Grandma played the harmonica and we found some of her old harmonicas to put out. I had a blank book I had used when I was doing a genealogy unit with Grandma and the boys. We each had our own blank book where we shared some stories about our life. Grandma had only written two, but I thought people might like to read something written by her about her life.
My sister, Aunt Terry and I did the readings for the funeral service. The pallbearers included my father, my husband and my son (Joey) as well as Uncle Dean, my cousin Chris and my brother-in-law, Jesse. Uncle Gary and Aunt Susie sang. Grandma would have been proud. It was so unbelievably beautiful.
Near Death
We've all been in a state of grief since Grandma's passing, but we've also tried to focus on positive things. Dad is the executor of Grandma's estate and that is extremely time consuming and challenging. One of the things to be decided was what to do with Grandma's car. Finally, my aunts decided that Dad should have Grandma's car and that Joey really needed a car to drive, so Dad gave us his 1999 Honda for Joey (and eventually Alex) to use. All of this took time, so Joey didn't get the car until sometime in March.
Last Friday, April 25th, Joey called me after school to let me know that he'd have to miss swim in order to work on a film he was making for his IB film class. The money for the swim fund raiser was due that afternoon, though, so Alex and I headed for the swim center with Joey's envelope of donations inside. On the way to the swim center, Joey called me again. This time he started the call by saying, "I'm okay." The sound of his voice quickly conveyed to me that while he was okay, something was NOT okay. "The car," Joey said, "the car is not so good." When he handed the phone to a police officer, I knew things were not good.
Thank goodness for my GPS unit! Joey had been out in the country scouting for a good location to shoot a picnic in a meadow scene when he lost control of his car and ended up on a guard rail. Angels surely took care of Joey and Trent who believed the car was going to flip over. Instead of flipping over the guard rail into a ravine, the car stayed put, on top of the guard rail, allowing the boys to scramble out of the car, completely unharmed.
As if Joey's guardian angel(s) hadn't worked hard to save him during his car accident, more work was needed still. I barely had Trent safely home before noticing that the skies were darkening quickly. "We're in for a storm," I said to Joey. It was much more than a storm. I was barely home before the phone rang. "Anna -- are you listening to the radio?" my father asked me. "No. I just got home," I replied. To my amazement, my dad told me that a tornado had just touched down not far from his home. More were expected in our area. Minutes after Dad's phone call we heard hail on the roof. Luckily for us, no tornado came through our neighborhood.
All of this leaves me feeling so thankful. Thankful my son and his friend were spared, thankful that the tornadoes that did touch down in Bell County didn't do too much damage and no lives were lost, thankful for another day.
Living with Alex, I've come to appreciate the beauty of every day. Having a child with a congenital heart defect means knowing that each day is a blessing and a gift. Sometimes I witness that through my heart-healthy son, Joey, too. I can't help but wonder if Grandma wasn't one of Joey's guardian angels on Friday. I know I feel her presence and I miss her very much.
The beginning of the year started the way it did last year -- with the completion of Robotics season and heavy-duty swim season. The District meet for swimming is in February so January and February are full of practices, meets and time spent making hotel arrangements and trip arrangements. This year was no different except that Grandma was sick and we kept spending time at the hospital in addition to our already-full schedule.
Joey was actually at his Regional meet at the University of Houston when I got a call from my dad. Grandma was being admitted again. She was not feeling well. I was a little relieved. Alex, Frank and I had visited her that week and she didn't look good. When Frank saw her, he felt she was doing fine and didn't need to go to the hospital, but I was worried.
My sister was supposed to come to the swim meet to cheer on Joey. He was the only swimmer from our whole county who made it to the finals in Houston. When she heard Grandma was being admitted, she drove to Temple instead. I was glad and eager to get on the road myself. Joey didn't know what was going on; I didn't want the news to interfere with his swim. He's hoping to make it to Junior Nationals sometime this year.
By the time I got home from Houston, things were not looking good. My aunt and uncle came from Mississippi. The week was one long roller coaster ride. Things wouldn't look good and then Grandma would rally back, giving us hope that she'd make it out of the hospital and back home with us. She started dialysis. That was brutal. Because her kidneys were in such bad shape, they had to do a series of dialysis treatments. She seemed to do well with the first two, but the third one seemed especially punishing. It was just too much and she had no reserves. She was nothing but skin and bones. A doctor told us that she wouldn't be able to come home to live because it would be too much for one or even two people to take care of her with her needing dialysis several times a week. We knew Grandma would not be happy about that, but still she fought.
They moved her to the floor and we were all relieved that she was in a private room and seemed on the road to recovery. We left for some much-needed rest. When the phone rang at 2 a.m. Frank was the one to answer it. He told me not to worry about anything, he'd go to the hospital to check everything out and call me if I was needed. At 2:30 the call came. I woke up Aunt Terry and Uncle Dean. We rushed to the hospital.
Grandma held on until my sister arrived from Houston. We had a priest come to deliver last rites. He was wonderful and did a beautiful prayer service over Grandma. She would have been pleased. It still seems hard to believe that Grandma left us on February 16th.
Family came from all over the United States. Some stayed with me, my sister and her family stayed with my dad and some stayed at Grandma's house. That was hard for them. I don't know how they did it. When I went to Grandma's house, it felt kind of weird. I kept expecting to see her or hear her voice.
The whole family gathered at my house where we used our pool table to spread out Grandma's generous number of photo albums. The funeral home gave us some 16" x 24" display boards we could use for the visitation. Each of Grandma's children had a board where they put pictures of their branch of the family tree. Then we fixed up two more boards of nothing but Grandma, Grandma and her friends and places she had traveled. How she loved to travel!
In addition to that, we gathered some little momentos to put on display in the visitation room. Grandma played the harmonica and we found some of her old harmonicas to put out. I had a blank book I had used when I was doing a genealogy unit with Grandma and the boys. We each had our own blank book where we shared some stories about our life. Grandma had only written two, but I thought people might like to read something written by her about her life.
My sister, Aunt Terry and I did the readings for the funeral service. The pallbearers included my father, my husband and my son (Joey) as well as Uncle Dean, my cousin Chris and my brother-in-law, Jesse. Uncle Gary and Aunt Susie sang. Grandma would have been proud. It was so unbelievably beautiful.
Near Death
We've all been in a state of grief since Grandma's passing, but we've also tried to focus on positive things. Dad is the executor of Grandma's estate and that is extremely time consuming and challenging. One of the things to be decided was what to do with Grandma's car. Finally, my aunts decided that Dad should have Grandma's car and that Joey really needed a car to drive, so Dad gave us his 1999 Honda for Joey (and eventually Alex) to use. All of this took time, so Joey didn't get the car until sometime in March.
Last Friday, April 25th, Joey called me after school to let me know that he'd have to miss swim in order to work on a film he was making for his IB film class. The money for the swim fund raiser was due that afternoon, though, so Alex and I headed for the swim center with Joey's envelope of donations inside. On the way to the swim center, Joey called me again. This time he started the call by saying, "I'm okay." The sound of his voice quickly conveyed to me that while he was okay, something was NOT okay. "The car," Joey said, "the car is not so good." When he handed the phone to a police officer, I knew things were not good.
Thank goodness for my GPS unit! Joey had been out in the country scouting for a good location to shoot a picnic in a meadow scene when he lost control of his car and ended up on a guard rail. Angels surely took care of Joey and Trent who believed the car was going to flip over. Instead of flipping over the guard rail into a ravine, the car stayed put, on top of the guard rail, allowing the boys to scramble out of the car, completely unharmed.
As if Joey's guardian angel(s) hadn't worked hard to save him during his car accident, more work was needed still. I barely had Trent safely home before noticing that the skies were darkening quickly. "We're in for a storm," I said to Joey. It was much more than a storm. I was barely home before the phone rang. "Anna -- are you listening to the radio?" my father asked me. "No. I just got home," I replied. To my amazement, my dad told me that a tornado had just touched down not far from his home. More were expected in our area. Minutes after Dad's phone call we heard hail on the roof. Luckily for us, no tornado came through our neighborhood.
All of this leaves me feeling so thankful. Thankful my son and his friend were spared, thankful that the tornadoes that did touch down in Bell County didn't do too much damage and no lives were lost, thankful for another day.
Living with Alex, I've come to appreciate the beauty of every day. Having a child with a congenital heart defect means knowing that each day is a blessing and a gift. Sometimes I witness that through my heart-healthy son, Joey, too. I can't help but wonder if Grandma wasn't one of Joey's guardian angels on Friday. I know I feel her presence and I miss her very much.
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