Heart Work

It has been a long while since my last post in this little corner of the world. For those of you who still drop by for a read, thank you.  Intentionally lately, I've been quiet.  Although life has been anything but quiet, I've been trying to consciously give myself something I've desperately needed on so many levels...rest. Rest for my heart, for my mind and my body. Unfortunately, it doesn't mean that I've had an opportunity to take a hiatus from the responsibilities of life, but instead of publicly writing and being constantly surrounded by social media, I've spent more time reflecting, praying, focusing on our marriage, working out, (working), sleeping, reading and just being. Rest. This rest has provided me time to grieve privately....to let my emotions linger for a short while...to figure out where I am. Right here. Right now.

This respite from blogging doesn't mean that I'm moving on from Aaron or his absence in our life; it doesn't mean that I no longer miss him. In fact, those statements couldn't be further from the truth. For us, life looks and feels drastically different than it did even two months ago, but I miss him the same. Deep anguish and mourning now come and go rather than being ever-present on a daily or hourly basis; still, I desperately long to hold him and see the 6 month old boy he would be today. To hear his giggles...or his screaming and crying...would be music to my ears. Days of more sorrow than joy and the accompanying meltdowns still manage to make their appearance here and there, and it is in these times that I so selfishly want him here. But, in this rest, God has been fervently working on my heart.

During the past six months, so many of our prayers consisted not only of pleading for God to take our pain away, but simply to be able to feel His presence in our darkness. At times, it was unquestionable, unmistakable, that He alone was holding us up. During other times, I wondered how many more weeks it would be until I'd see His hand reaching down to pull us up for air from the storm in which we were slowly drowning. I look back and can see that God has been faithful, upholding His promise, and that in this rest He has been working on quite the project. He has been slowly...very, very slowly... healing a very broken heart. My own.

In this healing, I feel that He has melded a tiny part of my broken heart back together. Inscribed in this little piece is acceptance. No, not complete, consistent and pure acceptance that our son died, but a peace about this path that we walk. A peace in knowing that Aaron is not and will not suffer through this life which, no matter how many ways you attempt to look at it, would not have been easy, or fair. Acceptance that we prayed for healing...and that God chose the method. I'm learning what it is to ask for God's guidance, accept His answer and follow the path that He lays before us, regardless of the anger, fear, disagreement or heartbreak that may accompany it.  Even several weeks ago, I thought that achieving this feeling of acceptance...of peace and surrender... would forever be impossible. Yet, if even for only a short while, God has brought us to this place and given us a glimpse. He is faithful. 

As I drove home from work tonight, I thought about that night, six months ago, when we looked sweet Aaron in the eyes for the first time and said hello and, shortly after, held him as we said goodbye. While reminiscing, this song came on the radio and tears ran down my face...because of the words and because of the memory. Almost weekly during youth group worship in the many months that I carried Aaron, he heard me sing this, my hands on my belly, feeling him move and loving every minute of it. This song brings back some of my favorite, intimate moments with him... the closest I ever got to holding him and singing to him while he was on this earth. God gave us our beautiful son, and despite the road that he chose for us to walk... He loves us.

Oh, How He Loves Us...

To listen, first pause the music player on the right-hand side of the screen.

Interwoven

Last weekend we were fortunate to get away for a couples retreat through our church. As church volunteers, we were invited to go as 'test subjects' for this first ever couples retreat. We are blessed to be part of an incredible church, so we knew it would be good, but we still weren't quite certain of what to expect. Prior to going though, I was sure of one thing...we needed this. 


This ended up being good times with wonderful friends, laughter until we cried, quiet time with God and quality time with each other. It was gentle conversations as we walked through the woods, nestled in snow. It was reminiscing about where life has taken us in our ten years together and in four short years of marriage. It was tears for our family that "should be" and hope for the family that we pray "will be". It was food for our souls. This was our hearts feeling modestly full for the first time since we said goodbye.This was a little glimpse of healing. 


Last weekend made me stop and think about marriage and grief, and what life looks like when these two are intertwined. Grief marrying marriage. What does a marriage look like not with one spouse grieving and the other holding them up, but under the weight of two deeply grieving individuals? It looks like two people struggling to wade through their own emotions while trying to interpret the others, all the while attempting to keep each other and life afloat.  Widespread belief is that this leads to divorce...that it looks like anger, frustration, resentment, exhaustion... a divided couple. And yes, it is some of these things. It may be resentment that your spouse does not "seem" to be grieving. It may be frustration that they are able to laugh when you can't seem to find a reason to smile that day. It may be counseling sessions and tears over more than just the loss of your child. But, grief interwoven with marriage also looks like love, compassion, devotion, encouragement, unspoken understanding, and the profound bond of sharing one of life's most intimate, yet devastating and desolate moments...together. 


 "Welcoming" grief into our marriage over the past six months hasn't been easy. There have certainly been days when we would not want to have a light shined into our life and marriage for all to see. But, we are making it through and are stronger and closer that ever before because of it all. I know when we look back upon this journey some day, one thing, over all the others, will have carried us through. It is grace. God's grace for us and our grace for each other. Grace for the bad days and downright awful days, for the meltdowns from the tiniest of triggers, and for what seems like grieving too much or grieving too little. Grace for the times of unkind words, lack of compassion and emotional roller coasters.  Grace for being unorganized, exhausted and unlike our normal selves. Grace for this journey...for better or for worse, in good times and bad. Grace. 

Source

Grace...so undeserved, yet so needed. What a beautiful gift. 

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.