As the days get longer and the warmth of the sunshine is stretched well into the evening hours, I miss our son even more. I miss the evening walks as a family that should have been. I miss our first spring days together in the warm sunshine and cool, crisp Colorado air. I miss watching him sleep soundly in our arms. I could go on forever...all of these "should have been moments" that we never got to experience with Aaron... I miss them as if they were a part of our life for as long as I can remember.
They say that time heals all wounds; that it makes loss easier. I disagree. It doesn't heal the gaping hole that your child's death leaves behind. It doesn't make it easier, it makes it different. The longing, tears and sadness that used to consume every minute and every thought of every day after Aaron died are replaced by the true realization of what we are missing...of who we are missing. The grins, giggles and busyness of a sweet seven month old boy that should be filling our days never will. For some reason, now more than ever, this reality is setting into my heart... and it hurts.
A promise is all that carries me through this hurt. A promise that someday I will see this sweet face again. Of this, I am sure.
(Aaron at 1 day old...I think he would have enjoyed a pacifier from the looks of it. Thank you for the video Steve and Amy!)
"Imagine a love so strong that saying hello and goodbye at the same time was worth the sorrow"
-Author Unknown
My heart is aching lately. I feel so broken. I miss Aaron. Everywhere I turn, I am reminded of him and of what we are missing. This sorrow isn't always evoked by something in particular, but this time it has been and I know the trigger all too well. I drifted into a dream. A dream of a future family and a healthy baby. I wondered what it is like to have a twenty week ultrasound with the words "four chamber heart" and "completely healthy". Of holding our child for the first time, alive; a child that we would actually get to bring home, love and experience.
...and then reality crept in... waking me up with a slap in the face... breaking my heart.... reminding me...
Just because we've been through what has felt like walking through hell and back over the past several months, we are not promised a perfect road ahead of us. At times it is easy to slip into the mindset that just because we have been through something that feels almost impossible at times, that the rest will be easy. Not true. God is faithful, but He doesn't always promise easy.Certainly, we look to the future with great hope and pray for these things...healthy future children, a family... but we are not naive. Nothing is guaranteed; we are not exempt. I see pregnant women in their often naive bliss (where I once was for a short time, as well) and to be honest, I'm slightly envious. I want that. I don't want to know what the other side looks like, but I do...all too well. I know that on the other side, babies die. Parents have to say goodbye to the tiny life that they have anticipated for months and have only just met. They experience the greatest joy and deepest sorrow almost simultaneously. It's not fair, but they do.
I realize that I may come across as quite the pessimist in this post... I am not. These thoughts are simply the result of loss, grief and a step into a world which I was once oblivious to. We truly do look to the future with hope, but through a lens that has been permanently altered. I think about a future child and I am instantly taken back to the overwhelming joy of having Aaron and the sudden heartbreak of losing him. I know that God hears us in our brokenness, but the void that Aaron has left has nearly crushed me in the past several months. Can I handle that again if God calls us to walk through it? Can my heart be open and vulnerable to that depth of love once more, and possibly, that depth of heartbreak again?
This is the uncertainty with which we face the future. We drift into these dreams, yet in this grief, we find that even our dreams aren't safe from reality.
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.
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.
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.
1 in 100 babies born will have some form of a congenital heart defect.
CHDs kill twice as many children every year than all forms of childhood cancer combined.
There are over 40 different types of CHDs.
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.
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.
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.
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
We are the proud parents of Aaron Matthew, a little CHD angel that God entrusted to us for too short a time here on earth. Aaron was diagnosed with severe congenital heart disease just two days after we learned and were overjoyed that we would be welcoming a son into the world. This is our journey with Aaron, led by our faith that God has a plan for us, wherever that may lead...
Our Little Family
About Our Blog
Since Aaron's diagnosis, I know we searched for and consumed any information that we could find on CHD, particularly any similar diagnoses. Oftentimes that came in the form of other families’ blogs, providing hope, encouragement, valuable medical insight and, well, reality checks.Besides keeping family and friends updated on our journey with Aaron, hopefully this blog will continue to spread awareness of CHD as it is the most common birth defect (1 in 100) and affects far too many families and children each year. We need to keep the research going for all those little heart warriors and angels out there.
