Monday, October 24, 2011

Mixed Emotions

23 weeks...
It is flying by... 

I find it hard to believe that in about three and a half months, we will be meeting our new baby girl face to face. I continue to be absolutely humbled and grateful for God's incredible blessing of this sweet girl, yet as I sit here and type while she gently squirms around, I can't help but feel a lingering sadness as I miss her big brother. Whether it is because I am asked on an almost daily basis "Is this your first?", "How many children do you have?" or because as we sneak towards February and little Miss' arrival, Aaron is on my mind so frequently. This sadness is not only the all-encompassing 'I miss him', but it is every little detail of him. From his antics in my belly of tucking his feet under my ribs, having hiccups at the same time everyday and really squishing his bottom or head into one side to create a lovely lopsided look, to the urgency of his birth and hearing his first cries and whimpers. The feeling of looking into his eyes for this first and last time. These details flood my heart with the unconditional love and complete joy of meeting him, yet simultaneously reopen the wound that has been left by his absence.

I imagine this mix of emotions, both the joy and sorrow left by Aaron, and the joy of new life will continue to ebb and flow over the next few months as we prepare to meet our little girl. Just as with Aaron's birth, I know that we will be blessed with  moments of pure joy, free from worry, sorrow and other conflicting emotions. However, I know without a doubt that there will also be bittersweet moments...those when a big brother should get to meet his little sister...and every picture of our family of three that should truly be four. 

This mix of emotions is simply (or not very simply) the bands of grief and loss and 'what should have been' that continue to weave themselves into our life moving forward. A new blessing doesn't cancel out a loss, the devastating loss of our son, and his absence doesn't annul the happiness and anticipation of an incredible new life...they meld together. One thing is certain in this crazy mix of grief and joy- this sweet little girl is going to know all about the brave, big brother angel she has watching over her.

Friday, September 23, 2011

Oh Boy, Oh Girl??

The past week has been a long week of waiting. Without going into much detail, an unexpected level 2 ultrasound was scheduled for our newest little one... we loved watching baby Selby tumble around on the screen a bit sooner than expected.  We are praising God and thrilled to announce that baby Selby appears completely healthy!!!! Without further ado, meet...


 Our sweet little GIRL!



What an incredible blessing and gift she is; we only wish big brother Aaron were here to meet her...


Monday, September 12, 2011

Blessing

I've been trying to finish this post for some time now. So, an August post in September...better late than never for some Selby family news:


August 22, 2011-
I've been praying for months now...many, many months. This morning, I want to fall to my knees at His feet in quiet, humble, wholehearted thankfulness. I want to run up to Our Father and wrap my arms around Him and thank Him through my joyful tears. How incredibly He continues to remind me that even during the storm and journey of the past year, He is here, He is faithful and He wants to bless us.


Dan and I have been living in a place of quiet and reserved joy (and I'd be lying if I didn't admit to a bit of anxiety) over the past four months. Wanting the freedom to hope and dream, yet fearful of those dreams being shattered again.  Never did we imagine (nor did we doubt) that God would bless us in an immense way in the few days leading up to a difficult time of celebration and mourning for us, Aaron's first birthday. I certainly didn't anticipate, one year ago, that the week of Aaron's first birthday would find us at Children's Hospital again. The ride up the elevator, the smell of the bathroom soap, the third floor waiting area, the pager in our hands; every detail brought back gut-wrenching memories of a year ago. The specific details of this day and the accompanying array of emotions are for another time, another post. As I tried to keep many torturous memories at bay, I focused on today as we were there to see and experience something I had prayed about and only dreamed of... ten fingers, ten toes and the beautiful (perfectly functioning) four-chamber heart of Aaron's little brother or sister! 


Yep, we are expecting Baby Selby #2 in February! The praise and glory to God that I am able to express for this blessing feels completely insufficient compared to the incredible amount of joy and thankfulness in my heart. I only hope know that God could see the smile plastered across my face as the cardiologist gave us the news. 


We continue to pray for the health of our new blessing as it will be a few weeks before we have a full anatomical ultrasound to determine if every detail of baby is healthy. And, although there are some nerves, I can't lie that I'm really looking forward to seeing this active little guy or girl up on the screen again.  We are excited to get to know this new little person and find out if "it" is a wee little he or she. At 17 weeks along (currently), little one is picking up steam in the growing department (or at least the belly is) and I am enjoying feeling his or her amazing 'love taps' which are becoming quite a bit more than the flutters they say to anticipate at this stage. 


It is hard to explain the peace that God has provided during this pregnancy. I am constantly reminded that although we have walked through the storm of the past year and may appear slightly more worn and bearing tattered hearts, we are still in one piece and closer to our Father because of His grace and faithfulness through it all. We continue to pray for Him to protect and guide our hearts in this new mix of joy and grief that we find ourselves. This new little one certainly brings to mind many, many details and memories of his/her big brother and the time we had with him. Fear, anxiety and doubt sneak in at times, but are quickly relinquished when I remember Whose this child is. As with Aaron, we realize what an incredible blessing this is and are grateful beyond words for the undeserved love God continues to pour over us. 

Thursday, August 18, 2011

Approaching a Year

It seems like so many of my thoughts are consumed with Aaron lately, especially as his one year earthly and heavenly birthdays are fast approaching. I find myself longing to remember every detail of those days...every detail of him, and still wanting answers to calm the lingering questions in my heart about his last moments here. 


I sat down this evening and flipped through last years calendar, looking at today...one year ago, wanting to remember the specific details of this time last year.  We started the day with a non-stress test and OB appointment at University Hospital, a regimen that had become the all-too-familiar twice weekly routine. I wasn't admitted to labor and delivery for observation that day, so Aaron must have tumbled around enough to make the nurses happy and allow me to go about my normal day of work. Flipping to the next week, my calendar is filled with typical doctors appointments and work patients, all scheduled along with a NICU tour, Labor and Delivery Tour, and meeting with neonatologists. Each Friday counting down to Aaron's due date is neatly circled and numbered in happy, yet anxious anticipation. 


This time last year, I remember thinking that in just a month or so, our son would make his arrival into this world.  We planned what little we could, but memories of the stillness of that ultrasound room filled with our tears only two months earlier always lingered in the forefront of my mind as a reminder that our best laid plans are often futile...we are not in control.


Those appointments that filled our calendars and days would never actually happen. During the time that we planned to spend anxiously awaiting Aaron's arrival, we would actually welcome him into the world, place him in the arms of surgeons, watch him slip from this life into eternity and plan his memorial service. In a small, private room of the CICU, I held him for the first time after the doctors let him go and in a quiet room of the funeral home, I held him for he last time. My heart knew that it was merely the shell of our sweet little guy, but how do you hand over your child when you know that it is the last time you will see him, most likely, in a very long time?  The next several weeks in the calendar are blank as is my memory of much of that time.  It still feels surreal.


Here I sit, almost a year later and on some days I am still in disbelief that our son was here...that he cried in the OR, that I got to peer into his eyes just once, and that we had him here with us for three whole days. On other days I struggle against the traumatic memories of the night we said goodbye.  Images I can't get rid of...nurses performing chest compressions, Aaron's blood covering the floor around his isolet, 'those words' spoken by our surgeon and the heartbreak and disbelief that this was our reality.  Mostly though, are the days that God lifts the burden of grief from my still broken heart. Over the past year, I have run the spectrum of clinging to Him with every fiber of my being to pushing away in anger, frustration and emotions too confusing for words. Yet He still extends His grace and love, compassion and guidance to me...me...me, who comes before Him with a heart that is understanding yet questioning, loving yet angry, soft yet calloused and bruised, healing but still broken. 


He reminds me that through suffering grows an enduring hope, a steadfast heart and a reliance on Him that I had never before known. I revel in the moments when His love and presence wash over me and quiet my aching heart, and once again, for awhile anyway, I am comforted that Aaron is healed and Aaron is home. 





Saturday, June 18, 2011

Three Little Words.

I can't tell you the number of times I've sat down over the past couple months to write a post, just to end up sitting and staring at the screen, or typing and deleting...typing and deleting. No words seem right.  It's not that I don't have anything to say; truly, in this journey of grief there is no lack of thoughts, emotions or experiences to share. Honestly, I miss coming to this space for Aaron and pouring out my heart... I try to write, but only three words seem to make it onto the screen...I miss him. That's it. That's my heart. Those three simple words. They are just that, simple, yet it is so difficult to put into words the depth of hurt and sadness that those three words still encompass. I miss him.


Since my last post, Aaron's eight and nine month earthly and heavenly birthdays and the one year anniversary of his diagnosis have all come and gone. On these days, we have celebrated and remembered quietly, in our own way. It seems that this solitude in my grief is what my heart has needed lately. This privacy and quiet time, mixed with happiness, laughter, prayers and still some tears continue to restore my broken heart.


I received the link below from a wonderful friend today (thanks Jess!) and it inspired me to get back on here and to share it. I never knew that this incredible testimony accompanied this worship song that I love...her words speak so much truth into continuing to worship in the midst of tragedy and on this journey through grief...




 We miss you, sweet boy. 
Love you, always...



Monday, April 18, 2011

Possibility of Happiness

Last week, a friend sent along an email with the message down below. It was one of those "perfect words...perfect timing...that is exactly what I need to hear... right now" moments. It was someone else articulating the words that I have been grasping for; emotions and feelings that I have not been able to formulate into words lately. 


I have constantly been trying to keep my focus on where who my happiness and hope comes from, all the while still having too many moments of feeling defeated, heavyhearted and frustrated. I bask in the moments of clarity when I feel God taking the weight of worry, anxiety and sadness from my arms. He alone carries my burdens for me and I finally feel like I can breathe...deeply. It is freeing. It is healing. I wish I could figure out how to remain in this state- all the time- because the alternative isn't always pretty. There are many other moments when I want to scream out in anger, put my fist through a wall and have a tantrum about how unfair it is that our son is gone. 


I do know that life is not about fair. I also know that when I take my eyes off of the One who is my hope, it is during these times that frustration, envy, bitterness, anger and constant sorrow have a chance to sneak in and take over. I am okay with the tears and longing for Aaron...they are normal and healing, but the bitterness and anger only eat away at my already broken heart. Quite frequently lately, God has had to redirect my vision and my heart to find hope again. I don't wake up every morning dreading the day, but I do wake up knowing that every day, for the rest of my life, I will  wake up to the reality that our son is not here. That will never change. As far as this life is concerned, it is permanent and relentless. The words below describe so perfectly this place where I have recently been. It's a place where, at times, hope and happiness are both tangible and very present, while other days are devoid of anything resembling these. I know that somewhere in my future they are there... 

Possibilities of Happiness
"I would imagine," a friend of mine said to me, sitting cross-legged on the floor, " that you're looking into the future and it's sort of yawning in front of you like a chasm from which there doesn't seem to be any exit."

(If my friend sounds like he's using too many ten-dollar words for him to sound believable, know that he's a British Professor of Education. Armed with that knowledge, let's move on.)

"You wake up every morning with the agonizing realization that there's no escaping it- you have to go through the entire day now. And when you lay down at night to cry, it's with the knowledge that you'll be doing all this again tomorrow, and the whole affair seems more than you're capable of dealing with."

And I just sat there nodding, because - yes - that was exactly what it was like.

I'd had people tell me it would get better, that they understood, and such. But here was someone articulating my experience much better than I'd been able. And, as he spoke, his voice cracked a bit.

"Nothing helps right now," he continued, "But as long as you're alive, there is some future in which you could, conceivably, be happy. No matter how unlikely is seems now, the possibility for happiness is there. I've despaired, wanted to just fall asleep and never wake up, thought for certain that I'd never be happy again - but I always have been."

I knew what he was talking about. He and his wife just adopted a three-year old boy, and sunshine seemed to follow this kid wherever he went. But I had seen the devastating losses and broken promises they'd endured - things that made my current circumstances look like an afternoon stroll. 

"But how can I hope?" I asked. "I feel like I've got nothing left."

"You don't have to," he said. "Hope doesn't come from you anyhow."

"Let all that I am quietly wait before God, for my hope is in him. He alone is my rock and my salvation, my fortress where I will not be shaken" (Psalm 62:5-6).


Thursday, March 31, 2011

Someday

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.

video

(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!)

Thursday, March 17, 2011

Dreaming...

"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. 



Monday, February 28, 2011

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.

OhHow He Loves Us...


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

Sunday, February 13, 2011

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. 



Monday, February 7, 2011

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.

  • 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. 


Saturday, January 29, 2011

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.

Tuesday, January 25, 2011

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



Wednesday, January 19, 2011

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

Sunday, January 16, 2011

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/

Sunday, January 9, 2011

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. 



Saturday, January 1, 2011

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.



 
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