Save a Broken Heart

As you can see, just over on the right side of my blog, February 7th-14th is heart awareness week...and for many of us, it is specifically CHD (congenital heart defect) awareness week. It only seems an appropriate time of the year with hearts making their annual appearance for Valentines Day.  Dan and I have never indulged much in Valentines Day, deeming it as a "Hallmark Holiday", but now I have the best reason to celebrate Valentines Day for an entire week (not that my hubby is not a great reason to celebrate). And by celebrate, I mean spread the word.


Prior to May 5, 2010, I barely knew what a congenital heart defect was. Upon becoming pregnant, many of us choose to have our child screened for Down Syndrome, Edwards Syndrome, neural tube defects, and other chromosomal defects. Those seem to be the "common" concerns for a developing fetus. Beyond those tests we tend to assume that our child is healthy. I look back now and wonder why I knew nothing about the defect that would kill our son...why is it that this is not common knowledge... why does the world not know that:

• Congenital Heart Defects are the most common birth defect.
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• 1 in 100 babies born will have some form of a congenital heart defect.
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• CHDs kill twice as many children every year than all forms of childhood cancer combined.
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• There are over 40 different types of CHDs.
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• 40,000 babies are born with heart defects every year (1 in 100) and 20 percent of them will not live to celebrate their first birthday.
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• 91,000 life years are lost to congenital heart defects each year.

These are truly staggering statistics. But, why? Simply put, it is because so little money is allocated towards congenital heart defects...in particular... detection, education and research of prevention/causes and treatments. 

"Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research. In the private sector, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research."- The Children's Heart Foundation


The truth of the matter is that the government and many foundations throw "gobs" of money at research and treatment of heart disease in adults, which more often than not is preventable through a healthy lifestyle, but what about these children? We can't chalk it up to unhealthy prenatal lifestyles or genetics. In many cases, such as Aaron's, there was/is no genetic link or genetic defects. Because research is grossly underfunded, we don't know the cause of these defects and it has only been during the past two decades that we have begun to delve into palliative treatments that buy our children time and quality of life. But, there needs to be more...


"Currently, the cost for inpatient surgeries to repair congenital heart defects exceeds $2.2 billion a year"- The Children's Heart Foundation


Again, this is a staggering number; a cost that could be significantly decreased with more funding for the development of less invasive procedures and more consistent and reliable treatment strategies. Ask any heart parent what their hospital bills look like, or the number of "extra" unplanned surgeries and procedures their child has had to endure and they will agree that this is part of the problem...a big part of the problem. You can't put a price on your child's health, but eventually reality hits. Eventually you get that $300,000 bill in the mail (that was only our 2.5 days in CICU, others spend weeks or months in ICU); a bill that is only one of many medical bills. This is/was a reality for us and for far too many families out there. (And, as unfair as it seems and as too many of us have found out...even when your child dies, you still have to pay that bill). 

We need to spread the word and advocate for all of the above reasons, but we also need to educate the general population, and in particular, those who are planning on becoming, or are, pregnant.  It is my hope that we can spread awareness so that another mom and dad are not hearing of a CHD for the very first time as they see only three heart chambers beating during an ultrasound...as they find themselves feeling devastated, terrified and alone when leaving that first pediatric cardiology appointment...as they are told that their unborn child doesn't have a good chance at life...as they learn that their supposedly healthy newborn was just rushed to the NICU  because his or her heart is severely broken. Without education, they don't know where to start, where to turn or what questions to ask. I know because we've been there...it is terrifying...it is devastating...it is a lonely place to be.


You never think it will happen to you... we didn't and it happened to us. Given the statistics, CHD will hit closer to home than you would ever want or expect...it may not be you or your child, but it may be a grandchild, niece, nephew or friend's child. This week, please educate and  advocate...tell our stories...get the word out...help to heal or save a broken heart. 


For more information, check out the 1 in 100 tab a the top of my blog, or check out this link to The Children's Heart Foundation.


For all of you lovely pregnant women out there, here is a great post by a fellow heart mom about everything a pregnant woman should know and ask, including 5 questions that should be asked at the 20 week anatomy ultrasound. This is often when heart defects are detected, but all too often it is when they are over-looked. 


As a tribute to CHD week, an awesome heart mom, Stefenie, is posting her interviews with heart moms and dads all week on her blog...she is a huge advocate in the CHD community. It is definitely worth stopping by for a good read. 

His Name in the Sand

Just in time.


As the anniversary of Aaron's death comes and goes each month, it is hard not to relive the events of that night...the trauma and complete heartbreak. The devastation. This month I made a promise not to dwell on that, but instead, to focus on what a blessing it was to have three whole days with him. And, to think of it not as the day that we lost him, but as the day that heaven gained him....the day that his heart was made whole as he woke up to the magnificence of heaven and the glory of his creator. Isn't that the marvelous day that each of use should long for...

Well, his anniversary this month was still difficult, but I smiled as I remembered Aaron in a beautiful way....through a beautiful gift. Although his name had been on the wait list for quite some time for To Write Their Names In The Sand, it came in God's time...perfect timing, of course. Aaron's name was written under a beautiful sunset on the evening of January 28th, his five month anniversary, on the shores of "Christian's Beach" in Australia. It may not seem like much to others, but the acknowledgement of your child and act of remembrance by others is truly cherished. 


His name in the sand is so serene...it brings peace to my heart:  

CarlyMarie provides an amazing ministry to parents who have been touched by child loss and has written almost 10,000 names in the past couple years. Check out her story and inspiration behind To Write Their Names In The Sand here.

5 Months

I began writing a post as a reflection of the past five months...the days since we first said hello to Aaron. As I read it back, it truly was a reflection of the past five months; a reflection of our grief and heartbreak. Yet, as I look back to that single day, August 25th, I decided that the post wasn't appropriate. It doesn't capture the feelings of that day at all. In fact, it was quite the opposite. 


Five months ago, today, was one of the happiest days of our lives. For a brief moment in time, we were able to forget that we were terrified...forget that we had spent the better part of the last year on our knees praying for a miracle...forget that our future as a family was completely uncertain.  Five months ago we heard the most beautiful cry and kissed the sweetest cheeks that were ever known to us. If only for a short few seconds, God graciously lifted our anxiety and fears and in that moment allowed us to experience unreserved pure love and pure joy...that of our son. He was perfect. And today, five months later, he is perfect...healthy and healed...perfect, as God planned.  We only wish that we could experience his healed body here on earth, rather than waiting for our eternity. 


I wonder so many things about you, Aaron Matthew. What you would look like, all the things you would now be doing, your personality? I wonder what you are doing now, what heaven is like, if you understand how much we miss you? Some day, Aaron. I know that we will have all these answers, and more importantly, that we will hold you once again...not nearly soon enough, but some day. Happy five month birthday, son. We miss you and love you more than you'll ever know sweet boy.   Love Always, Mommy & Daddy

...He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these...  ~Mark 10:14

Mustard Seed

I hate to constantly sound negative on here, but this is our journey through grief, after all and it's certainly not all rainbows and daisies. Today ended up being one of those days... a salt poured in an open wound kind of day. 


Today, I'm glad to know that this is all that is truly needed, because I feel like it's all that I have left sometimes...

Source

~Matthew 17:20

Prayer

I was just starting a new blog post today when I learned of some very somber news.


If you read the post "Complete Surrender" about the night that Aaron passed away, you may remember that we were praying over another baby in the CICU when Aaron went into cardiac arrest. That baby was sweet Madeline Grace. Her parents hit their knees and surrounded us, people they barely knew, in prayer throughout the wee hours of morning. 


They need our prayers...


Their beautiful daughter, Madeline Grace, is now fully healed in the arms of Jesus. In the words of her parents, she went to play with the angels in heaven yesterday, on her 5 month birthday. We know that their hearts are heavy and broken with the loss of Madeline. Please lift them up in prayer. I don't remember much of those first days after we lost Aaron other than the fact that they were very dark and we were very broken. I can only imagine that they feel the same. Please pray that Lisa, Shanker and their three small daughters will feel God's presence and comfort during this very devastating time.


http://madelinegracewiegel.blogspot.com/

Stage Two

Anger. It is somehow labeled as "stage two" of grief, yet it doesn't logically fall between stage one and stage three...more like it sneaks up after four, again before one and again after three. Really, anytime it pleases. 


Anger. This word seems to adequately describe my emotional disposition lately, and it is an emotion that is generally so easy and straightforward for me to acknowledge, understand and address. However, it has been just the opposite, bringing about frustration and confusion as I attempt to dissect it. It is an anger that seems to constantly change directions although it is not directed at God, or at anyone or anything in particular, other than our current reality that Aaron is not here and never will be. My hands are tied. I can't bring him back, I can't change the situation, yet, I can't seem to let go of this anger that I have recently found brewing and churning in my heart. An anger with no purpose...frustrating.

By nature, I am a logical person. I’ve learned to turn off emotions that are unproductive and unpurposeful. What I mean is, if the anger won’t change anything, or won't/can't lead me to change anything, then why spend my time and waste my energy being in that state? As I've walked through this trial, a trial greater than I ever fathomed would become part of my story, I've learned that logic doesn't cut it.  These emotions are too big; I can’t just turn them off. I want to let go of this anger; I don’t want to hold onto it, but it is holding onto me. At times I feel I may collapse under the strength of it’s grip. I don’t want to feed it or give reason for it to dig its roots down further into my heart and take foot, changing the core of my being in ways that I do not want to change. 


As this anger bubbles up and slowly turns into sheets of tears that burn my eyes and soak my face, two things always fall from my mouth: I hate that our son is not here and, during most days, I hate watching life go on around us. Hate. It's a strong word and one that I seldom use, yet, it is the truth.  

This gripping anger; it remains after the tears have come and gone. It leaves me weary and frustrated. It blurs my vision and keeps me from seeing the change and perspective on life that God is calling me to see through this trial. 

Father, I miss him. Please, take this anger, open my eyes and be gentle with my heart. 

Reflecting and the next 365...

The exit of 2010 and entrance of a new year is bittersweet. I thought I would be ready to happily bid 2010 goodbye, but with the bad...awful...unbearable events that it brought, some of the greatest memories of my life will always belong to 2010. I remember...


... the day Dyna (our dog) looked at me dumbfounded and with his head cocked to the side as I jumped up and down, giddy and overjoyed with a positive pregnancy test in hand...January 7, 2010.


....the smiles on both of our faces the first time we saw our little one's heartbeat on an ultrasound screen. A perfect heartbeat, even from a broken heart....January 12, 2010.


...hearing those words, "guess what that is?...He's not bashful!" from the ultrasound tech when we learned we were having a son. Pure joy!...May 5, 2010.


...the perfect moment when I heard Aaron's tiny little cries and kissed his soft warm cheeks as he made his abrupt entrance into the world...August 25, 2010.


...the words from our surgeon "He did wonderful; his heart looks great...97% chance he'll be going home by next week." Music to a mother's ears...August 27, 2010. That is the last time I remember feeling true happiness and joy in 2010. 


Yes, much, well most, of our world in 2010 revolved around Aaron Matthew, and we wouldn't change that for anything. Birthdays and anniversaries marked the calendar as well, bringing laughter and happiness, but nothing paralleled the anticipation of him. I am still amazed at how a tiny little boy changed everything. 


We received the greatest gift ever and became parents. We learned of a love we never knew existed...and loved without reservation. We experienced pure joy, true sorrow and every emotion in between. We learned more about loss than we ever cared to know. We cried gentle tears of joy and sobbed tears of deep heartbreak into exhaustion. We gained a new perspective on life. We spent more time on our knees than ever before...praying, thanking, questioning, pleading. We learned the meaning of complete surrender. We grew to know our Father in a deeper, more intimate way. 


I wouldn't trade any of that, but what I would give to have him here. (Yes, I know, quite the oxymoron).


We will see what the next 365 of 2011 brings as we continue to learn to incorporate life without Aaron into our lives. Hope resides with the longing that each new day brings. 


And, I think I will even settle for a somewhat "boring" 2011...

Oh how I miss that sweet boy... 

Ornament I made for Aaron's little evergreen memory tree.