- Congenital Heart Defects are the #1 birth defect and are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
Wednesday, October 28, 2009
Thank you to my friend Mary who awarded me the "Honesty Award". Here are my "honest" answers!
Here's how the award works:
1. Thank the person who gave you the award and link to their blog.
2. Share 10 honest things about yourself.
3. Present this award to 7 other whose blogs you find brilliant in design or content.
4. Tell those 7 people they have been awarded.
10 honest factoids:
1. I never *ever* wanted to be a mom. I was totally ok with the fact that my career would be my baby. I was never one of those women who says "I want 'x' amount of children" ~ I always said "I don't want kids". Cut to now, I am a stay at home mom of the most beautiful baby in the entire world, Amelia, 11 months. Honestly, I wouldn't care if I never went back to work and stayed home with Amelia until she goes to college : ) I want more kids, too.
2. I feel guilty that Amelia has a congenital heart defect and blame myself for it. Since I was the one that "grew" her, it had to do with something I did wrong. I don't know if I will ever not feel guilty as her life will never be "normal". She will think it is normal (I will do my best to ensure that) but I will always worry and always wonder.
3. I don't like how "Type A" I am and wish I could go with the flow more. I wish I could just let my house be a mess and just chill out more. I battle this every day.
4. When I met John, I always said we were complete opposites ~ in actuality, we could not be more alike. He *IS* my better half. He knows me better than I know myself ~ cliche, but true. It's scary sometimes how alike we are. We ARE that couple that dress alike, even though we didn't intend to.
5. I am angry that I never knew my dad's mom and that all of my grandparents passed away by the time they were 75. I did not have my grandparents at the two most importants days of my life ~ our wedding and the birth of our daughter. I wish Amelia would have been able to know her great-grandparents. They were awesome and I have the best memories of them.
6. I LIKE living on the East Side of Michigan, although I wish my family was here. My parents would love if we moved back to the Grand Rapids area, but we've established our family here and have a life here. Some day I would love to move back to the West Side, but right now I am happy.
7. I like to debate, but some times don't know what the heck I am talking about.
8. I wish I was smarter. People say "oh, you're so smart" but the truth is, I'm just "normal". I try to read a lot and become more learned, but I get distracted : )
9. I miss high school and college every single day. If I could repeat them both, I would, in a heartbeat. I get sad every year around Back to School time.
10. I am extremely jealous. I always want what everyone else has, even though I am SO blessed and I know it. Must be the Scorpio in me.
Unfortunately I don't have any bloggers to award because I don't have any Blogger friends other than Mary!!
Here's how the award works:
1. Thank the person who gave you the award and link to their blog.
2. Share 10 honest things about yourself.
3. Present this award to 7 other whose blogs you find brilliant in design or content.
4. Tell those 7 people they have been awarded.
10 honest factoids:
1. I never *ever* wanted to be a mom. I was totally ok with the fact that my career would be my baby. I was never one of those women who says "I want 'x' amount of children" ~ I always said "I don't want kids". Cut to now, I am a stay at home mom of the most beautiful baby in the entire world, Amelia, 11 months. Honestly, I wouldn't care if I never went back to work and stayed home with Amelia until she goes to college : ) I want more kids, too.
2. I feel guilty that Amelia has a congenital heart defect and blame myself for it. Since I was the one that "grew" her, it had to do with something I did wrong. I don't know if I will ever not feel guilty as her life will never be "normal". She will think it is normal (I will do my best to ensure that) but I will always worry and always wonder.
3. I don't like how "Type A" I am and wish I could go with the flow more. I wish I could just let my house be a mess and just chill out more. I battle this every day.
4. When I met John, I always said we were complete opposites ~ in actuality, we could not be more alike. He *IS* my better half. He knows me better than I know myself ~ cliche, but true. It's scary sometimes how alike we are. We ARE that couple that dress alike, even though we didn't intend to.
5. I am angry that I never knew my dad's mom and that all of my grandparents passed away by the time they were 75. I did not have my grandparents at the two most importants days of my life ~ our wedding and the birth of our daughter. I wish Amelia would have been able to know her great-grandparents. They were awesome and I have the best memories of them.
6. I LIKE living on the East Side of Michigan, although I wish my family was here. My parents would love if we moved back to the Grand Rapids area, but we've established our family here and have a life here. Some day I would love to move back to the West Side, but right now I am happy.
7. I like to debate, but some times don't know what the heck I am talking about.
8. I wish I was smarter. People say "oh, you're so smart" but the truth is, I'm just "normal". I try to read a lot and become more learned, but I get distracted : )
9. I miss high school and college every single day. If I could repeat them both, I would, in a heartbeat. I get sad every year around Back to School time.
10. I am extremely jealous. I always want what everyone else has, even though I am SO blessed and I know it. Must be the Scorpio in me.
Unfortunately I don't have any bloggers to award because I don't have any Blogger friends other than Mary!!
Tuesday, October 20, 2009
An Angel Left Her Wings
I found this poem when I was working on Amelia's 1st Birthday slideshow (which I will post when it's done). This completely encompasses how I feel for her.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.
Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.
Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.
When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.
I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.
She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.
When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.
And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.
© Tina M. Marascia
An Angel Left Her Wings
I have this little angel. For me she left her wings.She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.
Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.
Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.
When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.
I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.
She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.
When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.
And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.
© Tina M. Marascia
Wednesday, September 23, 2009
Is It Ever Really "Gone"?
By "It" I mean Amelia's heart defect. John and I seem to have a battle between "it's over and gone" and "she will always have a heart defect". I'm sure you can guess that I am the latter of the two opinions. When I tell people about Amelia's heart defect, I never know whether to say "has" or "had". She has a "different" heart....she will always have a different heart. Her mitral and tricuspid valves are her own tissues, but they are artificially created. She has a patch between the two atria and a patch between the two ventricles. This tells me her defect is never "gone"; her valves could leak; she still has holes at the site where they sutured the patches and these holes could never heal and may need to be fixed...how can I not think about her heart every single day?
We went to the Pediatrician today to get Amelia's second flu shot. The good news: she didn't cry one bit (which shocked the nurse and made his day!); the bad news: she's lost a little bit of weight (only a few ounces). Of course, the first thing I think is "is her heart ok"? I have to stop and remind myself that she was weighed on a different scale last time, she has been more mobile, her eating is not "perfect" in that it's not a strict amount of formula each day because she is eating less formula and more "big" people food now. My mind still flips around between the "what ifs".
It's hard, as a mom, to not think about the "what ifs" all of the time. I can't imagine what I would do if I did not have Amelia in my life. I looked at her today and said "thank you for being my daughter. I don't know what I did in life to deserve you, but I am so glad I did it." I honestly thank God every day that I did something right in His eyes and he blessed John and I with my "Mia Bella", my "Mia Bedia", my angel, my "pretty pretties".
I would never wish what our family has been through on my worst enemy. Some people think I am "dwelling" on her heart defect by starting a chapter and working with It's My Heart. I see it as an opportunity to help other families in the same situation and to hopefully see the day that no family and no child EVER have to experience a CHD.
I guess I have answered my own question. No, it is never "gone". It is never going to be something I don't think about ~ but I don't dwell, I let it allow me to love my daughter that much more and to support and empathize with others in the same situation.
We went to the Pediatrician today to get Amelia's second flu shot. The good news: she didn't cry one bit (which shocked the nurse and made his day!); the bad news: she's lost a little bit of weight (only a few ounces). Of course, the first thing I think is "is her heart ok"? I have to stop and remind myself that she was weighed on a different scale last time, she has been more mobile, her eating is not "perfect" in that it's not a strict amount of formula each day because she is eating less formula and more "big" people food now. My mind still flips around between the "what ifs".
It's hard, as a mom, to not think about the "what ifs" all of the time. I can't imagine what I would do if I did not have Amelia in my life. I looked at her today and said "thank you for being my daughter. I don't know what I did in life to deserve you, but I am so glad I did it." I honestly thank God every day that I did something right in His eyes and he blessed John and I with my "Mia Bella", my "Mia Bedia", my angel, my "pretty pretties".
I would never wish what our family has been through on my worst enemy. Some people think I am "dwelling" on her heart defect by starting a chapter and working with It's My Heart. I see it as an opportunity to help other families in the same situation and to hopefully see the day that no family and no child EVER have to experience a CHD.
I guess I have answered my own question. No, it is never "gone". It is never going to be something I don't think about ~ but I don't dwell, I let it allow me to love my daughter that much more and to support and empathize with others in the same situation.
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