Bittersweet Birthday

Yesterday Allison would have been 11-years-old. Someone asked me if after 11 years, this day was any easier. I had to think about that a moment. Easy isn't the right word to use. There is nothing easy about a birthday that will never be for your daughter. So I choose the word different. Each year that goes by is just different. Every year that passes a new bandaid is placed over a broken heart that slowly over the years the cracks in it have changed. I will never stop wishing that April 29th could be a day for celebration, and there will never be a day that goes by that I don't wish she was here, but I know for some reason this is the path God chose for us, and that is something we can't change.

So happy 11th birthday Allison Grace. I know this is a very special birthday for you because this year NaNa is there for your party. And for me, that makes this the most bittersweet birthday yet.

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.

Happy 8th Birthday in Heaven

Eight years ago I gave birth to the most beautiful little girl. Hard to believe she would be 8 years old today.

Happy 8th birthday Allison Grace.  We miss you.

February is "Heart Month"

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

What if that "1" was yours?

January, 2002 a man and a woman went to a routine 18-week ultrasound while pregnant with their third child. They came home to a message on their answering machine. "Something was seen on the ultrasound." The next eight months were an emotional and heartbreaking roller coaster. Their daughter was born on April 29, four weeks early, with several complex heart defects. After spending 32 days in the NICU she finally came home. The parents were told their precious baby would require heart surgery in the near future. The next two months were filled with doctor visits, echocardiograms, medicines, a fun family vacation and a move three hours "down south".

At 3 am on August 9, 2002, this man and woman loaded their 3-month old daughter into the car and drove 3.5 hours north for her open heart surgery. The next five days were a living nightmare for them. And on August 13, at only 101 days old, their daughter earned angel wings.

That "1" was our daughter, Allison Grace.

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 2010.
• 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, not to represent cupid, but 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.

Just Birthday

It really isn't a "Happy birthday" when the person is no longer living. And is it even a birthday when the person doesn't get any older? Our daughter Allison should be celebrating her 7th birthday today, but she isn't. There will be no cake or presents or streamers. Instead she will forever be 101 days old.

Each year I tell myself that this April 29 will be easier than the last. While the sadness has changed over time, each year seems to bring different feelings and thoughts. And this year is no exception.

I think many of the thoughts and feelings I have this year stem from all the changes that our family has gone through the past 6 months. "Birthday number 7" can pretty much be summed up with one word –– guilt. Not guilt as in "did I cause this to happen" or "if only I had done x differently when I was first pregnant", I have already dealt with those.

I am enjoying Japan. I miss my family and friends dearly, and yes I find things very frustrating and isolating at times, but I look at my kids and they are thriving and having an opportunity of a lifetime and I know we are where we are supposed to be. And then I feel guilty for that because being "happy" somehow means that I am "happy" with how things turned out. Had Allison lived I know without a doubt that we would not be here today. Our life would completely different than what it is now. It would be a life filled with doctors, medicines, tests and precautions.

Then there is Sam... there is not a day that goes by when she does something and I don't think "I wonder if Allison would have done that" or "I wonder if Allison would have had Sam's smile or big brown eyes". I cannot imagine my life without Sam, yet if she weren't here then we would still have Allison. I thought as Sam got older and time passed those feelings would fade, but they haven't. Someone told me once that loving both didn't mean I loved one any less. It sounds good on paper, but convincing my heart and head is a different story.

There is no black and white when one looses a child. There just seems to be many shades of gray. So I think back 7 years ago with a heavy heart and I miss my little girl. Seven years ago I remember looking at Allison for the first time in the NICU terrified of what the future held. If only I had known that the future was only 101 days long I would have held on to her a bit tighter.

Happy 7th Birthday Allison. We miss you.

Help Bring Awareness To CHDs

CHD stands for Congenital Heart Defect and is an anomaly of the heart that is present at birth and causes one or more portions of the heart to develop abnormally. Heart defects originate in the early part of pregnancy when the heart is forming and can affect any of the different parts or functions of the heart.

There are currently 35 distinct CHDs recognized and 1 in 85 babies in the United States alone are affected by any one of them. A few defects include half of the heart to be severely undeveloped, a hole in the heart, missing arteries going to the heart ,or arteries going to the heart to not be connected. And these are just a few defects. There are still many more unmentioned. Some children may have one CHD, while others have several.

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watched our little girl fight through open heart surgery at 3 months old, all to lose her life at only 101 days old. No parent should ever have to bury a child.

CHDs are the number 1 birth defect worldwide and the leading cause of birth-defect related deaths. There is no known cause for CHDs and there is no cure, only treatment, such as medicines, numerous surgeries and heart transplants.

Yet despite these facts, CHD's are the LEAST publicized and many newborns are still not being screened for CHD's. Very little people have heard of CHD's and even those that have, many times know very little about them. This is a serious issue that needs to be taken seriously.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on 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.

Help me honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost. Please sign this petition to help try to bring awareness to CHDs.

Thank you.

This post is in honor of our daughter Allison Grace Jacobs.
"Some people only dream of angels. We help one in our arms".

Wordless Wednesday: You Are Missed

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.

Help Spread Awareness

**This post is stickied. Please scroll down for new entries**

Most people know that February is American Heart Month. But did you know that within February is also CHD Awareness Week?

Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought "will my child die".

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.

We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.

February 7 - 14 is "Congenital Heart Defect Awareness Week". Raising national awareness about Congenital Heart Defects is important on 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.

Help me honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost.

So what can you do to help?

• If you blog, please make an entry helping to raise awareness. You can even link to this entry.
  
• Place a button on your blog for the month.
  
• 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.
  
• Wear read 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.

We love and miss you Allison.

5 Year "Anniversary"

To All Parents
"I'll lend you for a while a child of mine," He said.
"For you to love the while he lives and mourn
for when he's dead.

It may be six or seven years,
or twenty-two or three,
But will you, till I call him back,
take care of him for me?
He'll bring his charms to gladden you,
and should his stay be brief,
You'll have his lovely memories as solace for your grief."

"I cannot promise he will stay;
since all from earth return,
But there are lessons taught down there
I want this child to learn.
I've looked the wide world over
in My search for teachers true
And from the throngs that crowd life's lanes
I have chosen you.
Now will you give him all your love,
not think the labor vain,
Nor hate Me when I come to call to take him back again?"
"I fancied that I heard them say,
"Dear Lord, Thy will be done!

For all the joy Thy child shall bring,
the risk of grief we run.
We'll shelter him with tenderness,
we'll love him while we may,
And for the happiness we've known,
forever grateful stay;
But should the angels call for him
much sooner than we've planned,
We'll brave the bitter grief
that comes and try to understand!"


In Loving Memory of Allison Grace Jacobs
April 29, 2002 - August 13, 2002
"Some people only dream of angels,
we held one in our arms"

Thank You 5 Minutes For Mom

I discovered the most amazing blog site back in February –– 5 Minutes For Mom. This is one of the best sites for women about parenting, blogging, shopping , entertainment and life in general. You may remember my introduction of 5 Minutes For Mom back in March when I participated in Blog Party week. If you have not visited this site, please take the time to do so. You will be just as hooked as I am.

I am honored that this awesome site chose my entry on Allison's birthday to feature today. Thank you so much Janice and Susan. Thank you so much to those have read and to those who have left such kind words. For those who are walking in the same shoes as me, first let me say how sorry I am for your loss. Second, drop me a line. I would love to hear about your beautiful child.

Allison may have only lived on this earth for 101 days, but she will forever touch lives of those who live on this earth.

Five Years Ago...

I gave birth to my precious daughter Allison Grace. She died 101 days later.

Five years seems so long ago, yet I can still remember it like yesterday. I had just thrown a big "golden" birthday party for Matt. Friday night Shannon and I were in the grocery store getting food for the big party the following day. Shannon asked me if I was feeling okay and I told her I was just tired. I jumped into the party preparations and the party full steam ahead.

Sunday Shannon and I hit a few stores before meeting the person she carpooled with to go back to Ohio. I went home, finished cleaning and finally sat down. It was then I realized that I was having contractions. I was one day shy of 36 weeks. I was supposed to be induced because we lived over an hour away from the hospital where all our specialists were. We took Emily and Chris to the the neighbor's house and left for the hospital at 1am. By the time we got there I was already 4 cm and in full blown labor.

I was terrified. Not of the birth process itself, but of the unknown. We knew Allison was going to be sick and that she had heart issues and potentially some other issues. I remember Matt and I praying together in the car as he drove to the hospital.

Around 9 am on April 29, 2002 I gave birth to a beautiful 5 lb 10 oz little girl. I remember hearing her cry and the team of dr's cheer because that meant she was breathing, a huge thing for a heart baby. They were able to place her in my arms for a few minutes before whisking her away to the NICU. It was an amazing feeling.

On that April morning I remember being full of hope. Today I should be buying cake, and presents and balloons. I should be getting excited because turning 5 means the bittersweet start of kindergarten, losing teeth and learning how to read. But instead I wonder what she would have looked like on this day and would her wish have come true when she blew out the candles?

The next 101 days that followed are still engraved in my memory. Her first surgery at 5 days old, the one and only time we got to try and feed her through a bottle rather than a NG tube, the 32 days in the NICU, the dr visits, our move to a city 3 hours away, our vacation to North Carolina (I thank God for that week of memories), the medicines, waking up every 1.5 hours around the clock to pump or hive her meds, seeing her with my parents and my kids, the hellish 5 last days of her life and holding her in my arms for the last time.

The death of a child is something I wouldn't wish on my worst enemy. When you lose a child a part of you dies too. The pain you feel will never go away. Yes, after 5 years the pain is no longer like a sharp knife twisting into your heart, but rather a dull ache that no matter how much you try will never ever go away. And I rarely talk about it not because I don't want to, but because if I did I am afraid the tears would never stop. I am not some "super woman" as some say. I just do what everyone else would do –– learn how to live again.

Happy 5th birthday Allison. We miss you.

You can see a few more pictures here.

"Some people only dream of angels, we held one in our arms"

Show A Little Heart - Help Spread Awareness

Most people know that February is American Heart Month. But did you know that within February is also CHD Awareness Day?

It amazes me how often it is told about the statistics of heart disease and problems in adults. How awareness and research is raised for adults, while the children continue to be pushed into the background.

I have sent a letter to Oprah for the past 3 years asking for help to bring awareness to CHD. Never have I even gotten a response. I like to think that some desk monkey scanning the email is the one who never passes the idea or my letter to Oprah.

Each year, an estimated 1 in 100 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

When you see those two little lines on the home pregnancy test you are thinking about morning sickness, labor, diapers, breastfeed or formula, will I make a good parent? No one ever imagines that their thoughts would be consumed to echocardiograms, cardiology visits, medicine schedules, surgery, and the endless thought will my child die.

We lost our 3.5 month old daughter, Allison Grace, to complex CHDs on August 13, 2002. We endured 32 days in the Lutheran General Hospital NICU in Park Ridge, Illinois, endless doctor visits and watching our little girl fight through open heart surgery at 3 months old. We have lived through the horrible nightmare of burying a child, had our living children lose their innocence and endure the harsh realities of life at 3 and 6 years of age and somehow have managed to remain a family through it all.

We are just one story in thousands that need to be told. There are others, like us, who have lost children to CHDs. Some have children that have simple defects that may or may not need surgery, while others have children with complex defects that will need to endure several surgeries and years of medicines and doctor visits.

February 14 is "Congenital Heart Defect Awareness Day." Raising national awareness about Congenital Heart Defects is important on 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. Covering this important day on your show would achieve all this, and more.

I am asking the Oprah show to honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost. I would love to share my story and the memories of my little girl with your viewers in hopes to raise CHD awareness. Please feel free to contact me via email, XXX , or via telephone, XXX, to discuss this further. Thank you for your time and consideration.

So my call to action is this. Think about helping to bring awareness to CHDs this February.

• If you blog, please make an entry helping to raise awareness. You can even link to this entry.
  
• Place a button on your blog for the month.
  
• 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.
  
• Wear read on February 14, not to represent the chocolate and roses, but 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.

Check It Out

My sweet friend Val wrote an entry about Allison. Check it out and the cute pics of our sweet baby girl.

Thanks Val!

XOXO