Help Spread Awareness -- CHD Awareness week 2011

There is an incredible amount of awareness and education surrounding adult heart disease, but very little about the number one birth defect or leading cause for birth-defect related deaths.

Did you know:

• Congenital Heart Defects (CHDs) affects approximately 1.8 million families in the United States
• CHDs are the most common birth defect and the leading cause of birth-defect related deaths worldwide
• Nearly twice as many children die from CHDs as from all childhood cancers combined, yet research for cancer receives five times the funding
• There are currently 35 distinct CHDs recognized
• There is no known cause for CHDs and there is no cure. Only treatment, such as medicines, numerous surgeries and heart transplants.
• Each year an estimated 1 in 100 babies are born in the United States with a congenital heart defect
• 1 in 10 of those are born with a fatal defect

My daughter, Allison Grace, was one of these statistics. Allison was born on April 29, 2002, with several complex heart defects. Prior to her diagnosis in utero, I could not even tell you what CHD stood for. Allison spent 32 days in the NICU before we were able to bring her home to meet her brother and sister. Our next few months were filled with doctor visits, echocardiograms, medicines, and a heart cauterization.

On August 9, 2002, Matt and I kissed Allison and handed her over to the nurse for what was to be her first of several open heart surgeries. This was the last time we held our daughter alive. On August 13, at only 101 days old, Allison earned her angel wings.

We never got to see our daughter take her first steps or say her first words. We never had her wrap her arms around us and say "I love you mommy and daddy." There is no "first day of school" photo. She will never graduate high school or go to college. Matt will never walk her down the aisle and give her to the man who has promised to love her forever. We were blessed to have had 101 days with our daughter. Many CHD parents are not as fortunate as us.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on so many levels—it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the general public about the symptoms of CHDs and possibly save lives; and it will affirm the need for researchers and medical professionals to continue their work to improve the outlook for CHD patients.

Here are a few ways you can help bring awareness to CHDs this February.

• As my long-time readers know, I blog every year about this important issue. If you blog, please make an entry this month helping raise awareness. You can even link to this entry.
• Place a button on your blog for the month.
• If you are on Facebook, become a fan of CHD Awareness Week 2011.
• If you are looking to give to a charity, think about donating to one that supports CHD research, such as the Children's Heart Foundation.
• If you give to the American Heart Association, put "Zachary Brooks Foundation" in the memo designating that your funds will go to a foundation set up specifically for CHD heart awareness and research.
• Wear red on February 14 to remember those who are affected by CHDs.
• And if you have children, hug them a little tighter and thank God for the miracle and wonderful gift you have been given.

This post has been made in loving memory of Allison Grace Jacobs.

Heaven is the Face

Steven Curtis Chapman is one of Christian music's most well known artists. However the past 15 months his family has been living in a personal hell that I wouldn't even wish on my worst enemy. On May 21, 2008 his 5 year old daughter was killed in a tragic accident. The loss of a child is so painful and so private that I cannot even imagine being thrusted into the public limelight while I was trying to figure out how to get out of bed each day.

SCCs upcoming album is set to be released in November. This week his first song from that album was dropped. It is a song that speaks so deeply from the soul. The Chapman family are real people. People who do not hide behind their faith to make the world around them think that everything is okay. Instead they are people who use that faith to get through each day and share their emotions on their sleeve.

Such an amazing song, and I can't wait to see what the rest of his album is like. Make sure you have plenty of tissues nearby. You will need them.



SCC talks about writing this song. I know his little girl is proud of her daddy from up above.

Mother Time

I try to keep this blog "uplifting" and "lighthearted." I talk about my kids, our family's latest adventure, travels, David Cook, occasionally something thought provoking and post lots of pictures. Sometimes it is easier to talk about the good then want a pity party for the bad. But over the past two years of having this blog I have grown a "family" here, and sometimes we just need to talk things out with our family. So I apologize in advance for this "all over the place", generally down post.

For those who are familiar with our family's story, you know that we lost our daughter Allison Grace 6 years ago next week. For those who are newer to the Ramblings from Life family you can read about her here.

Allison lived for 101 days. It's been almost 2,190 days since I last held her. Somehow that just doesn't seem fair. This is a hard time of year for me. April and August sneak up on me with an overwhelming sadness of what was and what could have been. I have never been able to buy my daughter a birthday cake. I have never been able to complain about teething and potty training woes. I have never been able to pick her up from preschool or even go buy her a single pair of shoes. Instead I have a handful of pictures, a video, a single box full more of condolence cards than personal items and a cold grave to visit.

I sit back and think that 6 years seems so long ago. Alot has happened in 6 years. But other times it seems just yesterday it was 5 am on August 9, 2002 and I was holding Allison for the last time before giving her to the doctors that I trusted with her life. I never talk about those last 5 days of her life, but Matt and I saw things and endured things and had to make decisions that no parent should ever have to do. It is amazing that somehow Matt and I are still married and somewhat sane.

There is a saying that says "time heals all wounds". Whoever made that quote up must have never lost a child. Maybe I will think differently in another 20 years, but somehow I doubt it. There is a large difference between acceptance and total healing. It's taken me 6 years, but I have reached that stage of acceptance. But that doesn't make it hurt any less. It doesn't make me not miss her every day. I still question "why". But the pain isn't the same gut wrenching pain that was once there, rather a dull ache and sadness that truly will never go away.