Sunday, October 24, 2010

Goodness & Faith

Better pull up a chair and grab a cup of coffee...this post ended up being a long one...

Today has been a rougher morning and I'm not sure why. Our Sundays usually begin with church, but not today (as we are going tonight), so maybe that has something to do with it. I walked into Aaron's room this morning with hopes of finishing a couple more little things and it hit me. All of a sudden, the pain and the fact that he was gone was once again very fresh, very real and very raw. I find it odd that during some days the pain is so great that we feel as if we said goodbye just yesterday and other days it feels that it has been so much longer than the past two months. This morning, it felt to me as if we are still waiting for him to come home, all the while knowing that he never will. I can't tell you how much I look forward to the day that we will be together with him again.

On that note, there is something else I've struggled with over the past several weeks. I've heard and seen the phrase "God is good all the time, and all the time God is good" many, many times since Aaron passed away and to be honest,  it ties my stomach in knots when I hear it. I get frustrated. I want to scream and cry. At times, my response would be "that's easy for you to say, your son didn't just die." Now, I'm not having a pity party, but it feels similar to times when I've been having a rough day dealing with Aaron's death and I happen to run into the 'always happy, overly joyful, I just found a leprechaun and a pot of gold today' type of person who says "come on, smile. Nothing about your day can be that bad."  All I want to say is "let me tell you what today the last two months of my life have been like..." It is these same feelings I've had when I hear that phrase "God is good all the time, and all the time God is good". 

If you read my last post, or many of my previous posts for that matter, you may wonder if I've had a change of heart. I hope that you don't get offended and stop reading. Please, continue on as I stumble through some reflecting that I've done over this...

Because of my faith and the relationship that I have with God, I am honestly unsure why I've had this negative attitude and response to this saying/phrase, so I spent some time reflecting on it yesterday. One thing I am sure of is that with all of my heart and every ounce of my being, all  I've ever wanted to be other than a wife is a mother. I enjoy my career as a physical therapist and I always strive to do my best at whatever I do, but it doesn't hold a candle to my desire to have a child, have a family and be a wife and mother. Yes, I am still a mother; I have a son, but right now, I have no one to mother. I want him back... I want him here... I want him, and only him, in my arms. In conversations with God, I've asked "If you are good, why did you take our child, our son; a child who was so deeply and desperately wanted and loved from the moment we knew we were expecting? Why?" I know I will never have an answer; not on earth or in this lifetime anyway.

Through this journey, I've realized that it is alright for me to have frustrations and questions for God; it actually keeps me talking to Him...a lot. I've also come to the realization that it is human nature for us to define His goodness with how closely His plan lines up with our wants and desires. It would be easy for me to say that God is unloving and that He is not good all the time because He took our only child from us or did not stop our son from being taken from us... however you'd like to look at it. He is the great physician; His hands perform miracles everyday; yet, we didn't get one on that night that we hit our knees and begged and pleaded and cried out to Him to save our son. We never got to change a diaper, feed him, snuggle him, hear him scream and cry or bring him home.  From the minute he was born, he was poked and prodded, sedated and cut open. And although I pumped religiously every two to three hours because it was the only way I knew to help him, he was never fed...not a single drop. I walk through life carrying this weight and knowing that we signed the consent forms; and after it was all said and done, his poor body endured being cut open again, only so doctors and science could "try to figure out and learn from what went wrong". The only time I ever got to hold my son, his body was lifeless and cold...he was already gone. However, we carry these burdens knowing that we listened to the doctors and that our intentions were rooted in nothing but love and hope so that he could have a chance at life. Had we known the outcome, I wouldn't have done any of it. His short time on earth would have been spent in our arms, surrounded by his family and knowing and feeling that he was so very loved. I hated watching Aaron suffer and feeling so helpless in doing so. Honestly, I do have trouble seeing the goodness in all of this.

As I have spent some time reflecting, praying and reading the bible, I realize that maybe, just maybe, what we are walking through right now is good. Maybe this...the tears, the frustration, the deep sorrow, the anger, the longing for our son...maybe all of this is a small part of God's goodness. Maybe it is all part of the bigger picture that we cannot see. Maybe those three days of suffering would have turned into years...years of frequent hospitalization, surgeries, constant struggles and poor quality of life...years of wondering if each day would be our last day with Aaron. Cardiac kids are fragile. At some point, he would have required a transplant and we would be left wondering if he would receive a heart. The future holds so many unknowns. I have no doubt that God could see what his life would or could have been and maybe he made His decision. It wasn't a decision defined by our wants and desires or that lined up with our plans, but maybe He couldn't bear to watch His child suffer. Honestly, in that, I can see His goodness.

I journaled everything above prior to going to church tonight. As I've said before, the ways in which God speaks to us at times amazes me. Our pastor preached on Saul (Paul) in Acts 9 tonight and one thing he said really spoke to me...

  "The bible teaches that God does not do evil things or bad things to people. We could argue all night long about whether God caused that or allowed some point, you have to throw that question out the window. The truth is that something happened; something big, something life-changing and it knocked me flat. Is that tragedy in my life that brought me or someone else back to God a good thing or bad thing? It's still a bad thing. How about was a bad thing and God redeemed it. God used it. God refuses to waste the mess in our lives. God took a bad thing and used it for good; just like He promised those who love Him." 

I gained a lot of clarity through the sermon tonight, even though it wasn't speaking to exactly what we have been going through. The tragedies  that happen to us in life can't be classified as good simply because they brought us or someone else closer to God, but God is Good. He uses these situations and "the mess" of our lives for good and although He never said that life would be easy, He said that we wouldn't go through it alone. He is always there. He is ever present...holding our hand, walking through it with us and redeeming it for good and for His glory. We must throw the "whys?" out the window and trust in Him. We must have this thing called faith.

So, with trust and faith that God is using this storm, this tragedy, this mess in our life right now, I can say, with confidence, that "God is good all the time, and all the time God is good".

Wednesday, October 20, 2010

Finding a New "Normal"

To the outsider looking in, our life looks normal. Days consist of Dan and I, our dog and cat, work, church, friends, youth group and family activities. It's really no different than our life, "pre-Aaron". I imagine that people wonder how things can be so difficult when life was good before and not much has changed... it all seems the all seems so normal. From the outside, that's how it appears

There aren't enough words to begin to describe how far from normal our life feels right now, in so many ways. Our plans for our future normal life were centered around cardiology appointments, sleep deprived nights (and days), fretting over Aaron's ability to gain weight and "produce" dirty diapers, figuring out life on a semi-one-income budget, doing life as a family of three, and of course, enjoying each tiny, yet momentous baby Aaron milestone. Much of it probably doesn't sound like fun to most, but we were looking to the future with great faith, anticipation and joy. Now that this "future" that we anticipated is here, it looks so very different than what we thought normal would be. 

A glimpse of our new normal is:

...knowing that anticipated milestones of smiles, rolling, crawling, walking, talking will instead be reminders of what we are missing and how long Aaron's been gone. 

...Dan and I asking each other the generic question "how are you doing today?" and having a mutual, unspoken understanding that it is only in reference to one are you coping today.  

...the look of panic on my face and coinciding pit in my stomach when asked by patients "so, do you have any children?".

...signing up for a grief support group.

...wanting to say hello to a neighbor, acquaintance or coworker only to have them avoid us because they don't know what to say...and learning to not be offended.

..."for better or worse"... truly understanding/learning how to love and respect one another not only when we are in the midst of happiness and smooth sailing through life, but through the times of unfathomable grief, pain, anger and sorrow.

...a home with our son's ashes on our mantel and an empty nursery upstairs. 

...days that feel so full of work, friends, family and church, yet at the same time, feel so empty.

...a few feelings of dread and despair accompanying the customary joy of the upcoming holidays.

...appreciating and cherishing the small things, each other and life more and realizing that time, people and life itself are fragile.

...sharing a more intimate relationship with our Father and embracing a much deeper understanding of His sacrifice for us.

Our new normal is not the normal we had planned, but, we have learned more than anything that our future is not ours to plan. We planned and prepared for every aspect of starting a family and raising a child before Aaron was ever conceived and where did that get us... to a place, a situation, a future we never dreamed of and certainly didn't plan for. So, we embrace this new normal as best as we can right now. We're learning and adapting as we go, picking each other up when we fall and remembering that God is somehow using all of this for His glory...whether or not we understand the "whys?" and "why nots?" that present themselves. God walked beside us through the greatest joy and greatest sorrow we have ever known in three very short, yet very long days. He has provided the strength, comfort, peace, understanding and love that we have needed and will continue to need in order to remain standing when we come out on the other side of this storm. And, during times when we have been presented with more than we can handle, He has graciously embraced us, lifted us up and carried us until we can regain our footing and find the strength to stand on our own once again. Now, as we venture on to find our new normal, God is right beside us...encouraging us when we are disheartened, picking us up when we fall, comforting us when we're broken and graciously and lovingly carrying us when we are too weak, weary and exhausted to take one more step alone. Our God is an amazing Father!

Monday, October 18, 2010

Loose Ends

A somewhat quiet weekend alone allowed for a lot of time to just work on projects and get lost in my thoughts. Thought about our life, Aaron, our future, Aaron, work, missing get the picture...he's on my mind A LOT. Sleep has not been easy to come by; I'm starting to believe that my body still thinks there should be a newborn around; therefore, my internal clock is way off. Most likely though, it's just one of the fun parts of grief. That being said, tonight I'm a bit tired, so this won't be a long post. I just wanted to share a few loose ends from before Aaron was born that I was finally able to work on again this weekend without ending up in full meltdown mode.

For the past seven weeks, the door to the nursery has remained closed. It's been too much to bear to look in at a constant reminder of our hopes and dreams that have vanished. At times, I would find myself in there, just sobbing, as I held Aaron's tiny clothes, looked through his books, and just imagined how life was supposed to be with him. I'm sure some people wonder why we bothered with a nursery when we weren't absolutely, completely sure he was coming's because we felt we were giving up on him before he even had a chance if we didn't prepare for him at home, and we certainly weren't giving up hope. Dan and I knew it would be therapeutic, at some point, to have the nursery fully finished as a quiet place to get away and remember our little guy. We have very slowly been finishing it on days when the profound sadness doesn't seem so intense, fresh and painful.  This weekend found me painting some nursery furniture and adding a few more finishing touches to his room. Pictured below is his beautiful crib that was a gift from Namaw and Granddad (Selby) as well as the quilt that was the "inspiration" for the colors of his nursery; my very talented mom made this beautiful quilt as a gift for sweet Aaron and it will forever be a keepsake.


I also finished a 'newbie" hat that I had just started crocheting for Aaron before he made his surprise entrance into the world. With a little help from a pattern and some you tube crocheting education, I was able to figure out how to do something other than crochet in a straight line. As my first attempt at a hat, it's certainly not perfect, but it was made with love from momma and I think he would've looked pretty darn cute in it!  I imagined sweet newborn pictures in this little beanie, but like so many other plans, it was left unfinished...

I'll just leave you with a scripture that was on my mind tonight and has been a source of comfort on this journey through grief...God's promise to us:

"Don't let your hearts be troubled. Trust in God, and trust also in me.There is more than enough room in my Father's home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is ready, I will come and get you, so that you will always be with me where I am. And you know the way to where I am going."
-John 14:1-4, NLT

Wednesday, October 13, 2010

Reminders of our Little One

Today was a good day.

Today, there were no meltdowns caused by unmanageable grief, but there were tears. These weren't the endless tears that come from the heart-wrenching, bottom-of-my-soul, "I don't want to live another second without our son"  sobbing. These tears were quiet and gentle, found somewhere between the emotions of joy and sorrow... and all I know is that they ran down my face as I smiled.

In transitioning from my old cell phone to my new one, all of my contacts, photos and videos were transferred onto our computer. When sorting through these, I ran across two videos...the only two I had ever taken with my phone and had then promptly forgotten about. Little did I know when I took them, that I would forever cherish those few moments I captured. I couldn't stop smiling as I watched my pregnant belly, at eight months, move all over the place with Aaron's punches, kicks and rolls. We don't have any other videos of Aaron...only pictures. I smiled and I cried. I had forgotten the joy, wonder and miracle of being pregnant. I had forgotten how active he was all the time. I had forgotten how he responded to our touch. I had forgotten what it felt like to know he was safe because he was part of me, I was mom and that I was providing for him. It is in these thoughts that I find sorrow; I wish I could have protected him for longer...37 weeks and 1 day wasn't nearly enough time with my little one. It is in this video that I find joy; God is reminding me that this feeling of contentment in protecting and keeping Aaron safe is what I should now feel as he is fully healed and protected from further suffering on this earth. So, in watching this handful of minutes of my very lively pregnant belly, I find myself in tears, somewhere between joy and sorrow, reliving and cherishing every second, all the while, missing my Aaron Matthew with every ounce of my being. 

Through memories such as these, God is showing me how to smile and find joy in the small things of life again...He is slowly healing my broken heart and the gaping wound that Aaron's death has left. I think about Aaron constantly and still have rough days filled with anger, questions and meltdowns. God has been graciously interrupting those miserable days with very visible and tangible reminders of Aaron...reminders that make me smile. For that, I am thankful.

 The funeral home said that they would have imprints of Aaron's feet made...I didn't honestly know what to expect. I recently went to pick them up and was handed a single, small box. I thought I would be nothing but a mess of tears as I opened it; however, I couldn't help but smile when I saw that sweet, perfect replica of his foot and felt each detail, each toenail and each wrinkle in the palm of my hand. I didn't get to hold him nearly long enough here on earth; I had forgotten how little my little one was. Now, I can remember our son and smile as I hold one of God's tiny masterpieces in my hand.

Tonight, I think God was showing off. On evenings like this, I truly enjoy the view from our house. In looking at the sunset over the beautiful Rockies, my first thought was sadness. Sadness that Aaron never saw beyond the walls of a hospital, felt the warmth of sunshine or had the opportunity to see the beauty that this world has to offer. I soon realized, however, that whatever he is looking at in heaven is so much more magnificent than anything I could ever imagine and certainly more incredible than the beauty that God creates for us here on earth. Again today, I smiled. 

"Think about the things of heaven, not the things of earth."
-Colossians 3:2, NLT

Saturday, October 9, 2010

"Fantastically Emotional"

You'll have to excuse me today... I'm having a rough day. I've decided to coin this as the "fantastically emotional" stage of grief. 

This morning was spent celebrating and honoring Aaron's life at the beautiful event 'A Walk to Remember'.  I am saddened that there were so many people to participate in a remembrance/celebration for such a sad purpose. I will post some pictures and thoughts about our morning at the walk, but that is for another day when I have a bit more clarity. I loved remembering our son alongside so many other families who can relate to our loss and understand our pain, but it left me on the verge of tears all day. 

If you know me personally, I'm not one to be very emotional in front of others, including family, and especially NOT in front of complete strangers. Grief does weird things. Today, the smallest things would set me off and before I knew it, I was melting into a puddle of tears. 

This evening I had to venture out to Target and I wondered what people thought when looking at, puffy eyes and all. I imagine they either assumed I was quite the druggie, or more obviously, I had been crying. Upon checking out, the very sweet clerk handed me my receipt and the stack of coupons that printed (based on past purchases), along with a very bubbly "Have a fabulous evening!". As I glanced down at the receipt and coupons, I noticed that they were for pampers swaddlers and baby formula. I looked up and made eye contact with the clerk; I stood there for what felt like an eternity and I could feel the tears coming, once again. "Do you need anything else?", she sweetly asked. With the "fantastically emotional" day I was already having, I wanted to throw a temper tantrum, break down sobbing and scream for the entire world to hear "Why in the hell do I need diapers and formula!?! Don't you people understand?!?  My baby just died!!" But, I contained myself.  "No, this is it..." I managed to muster. I walked off,  tore up the coupons and threw them away. Silent tears ran down my face as I walked out of the store. 

This inability to keep my emotions in check reminded me of another experience I had at the doctor's office just days after Aaron was born and had passed away. I found myself sitting on the exam table at my OB's office once again, as if three appointments each week prior to Aaron's birth and the last handful of days spent in the hospital weren't enough.  I was fighting constant, severe headaches and alarmingly high blood pressure. The nurse was in the room taking my vitals, discussing symptoms and making small talk with us; she knew of the nightmare that Dan and I had been through just a few days earlier. As she was running through her normal list of questions, she nonchalantly asked, "Any depression?". Now, this question should not generally elicit any sort of extreme emotional response, but I just kept staring at her and the tears were already streaming down my face. "Are you kidding me!? Our son just died! What kind of question is that?!" I managed to say through the sobs that had now taken over. I'm not a mean person and would never say anything to intentionally hurt or offend anyone, but there was no sort of filter between my brain and mouth before that statement came flying right out. All I could think of was "What kind of question is that? How about using some judgement in this situation? You should be concerned if I'm not depressed right now!"  I sincerely felt bad for making her feel bad; she was just doing her job. 

Just two examples of the tiniest of things that should be just that: tiny and insignificant. I'm reminded of the saying "making a mountain out of a molehill". That is what grief has done. Generally, I'm one to shrug things off and I'm not quick to anger, or to cry for that matter. It is in these tiny, insignificant and trivial moments that grief has brought me to my knees, sobbing, with my heart breaking all over again. 

Things I'm learning about grief and loss:

- It is a roller coaster of a journey.

- Grief is not logical.

- They change who you are.  

- Grief doesn't come in a defined order of "stages". I can hit all 5 of these so-called "stages" of grief, some multiple times, in a single day.

- I have very little control over those "insignificant" things that can bring me to my knees or turn me into a fountain of tears in an instant.

- I think there should be a stage of grief called "Fantastically Emotional" because I'm sure I'm not the only one...

Thursday, October 7, 2010


As Dan and I lay in the darkness of our room last night, we anticipated another sleepless, restless night. These have been plentiful lately. Awake at 2 and 3 o'clock in the morning with no baby to feed, no crying little one to calm and a million thoughts running through my head. "I really miss Aaron", I whispered. "Me too. Today was one of the first days it all really hit me. Me too...", he said quietly. That is how life is beginning to feel lately. The shock and numbness are wearing off and the reality is settling in, becoming all too real and present. We go about our days with broken hearts... hearts that feel like they have been ripped out, stomped on and then handed back to us and are somehow still supposed to function. Everyday feels like a fog, some better than others, but still hazy and lacking clarity, lacking purpose. Putting on a happy face is getting easier just to make it through the day, even when it is not reflecting any sort of joy in my heart.

As we lay there fighting our wakefulness, I couldn't help but think that the dark emptiness between us should be filled with our six week old son, surrounded by our love and protection. I slid over, wrapping my arm around Dan with tears running down my cheeks and pressed my ear to his back, listening to the strong, steady "lub-dub" of his heart; I wondered how something that is so simple, basic and functional in so many of us was so very broken in our little boy. Aaron's broken heart, our broken hearts and no way to fix them...part of my heart left with Aaron the day we said goodbye. 

Our insomnia last night was not only provoked by broken hearts and minds that we couldn't quiet, but also by a good old Colorado thunderstorm that seemed to park itself directly over our house for quite some time. The thunder and lightening would have woken even the heaviest sleeper as the sky sounded like it was cracking in half right above us. As we listened to the storm beat down on the roof and gutters my first thoughts were, "I love the sound of rain", followed by "this is why I'm glad that we didn't bury Aaron". Yes, I know, very weird, but these are the irrational thoughts that grief seems to plague my mind with. Almost everything I see, do or hear right now triggers some sort of thought or memory of Aaron, 99.9% of the time. To explain my thought above, there actually is some "rational irrationality" to it. 

When Aaron passed away and Dan and I (and our family) began the process of planning a memorial service or funeral, the major decision after choosing a funeral home was to determine if we wanted to pursue burial or cremation. That is a road I never dreamed we would have to walk down, regarding our child, and what a painful, heart-wrenching conversation for two parents to have. We were not in a place mentally, emotionally or financially to decide on and purchase a family plot and the thought of our son being buried alone and away from us someday down the road was just too much to bear. We know we will all be reunited in heaven someday. I know it is just his body. It is only a shell where his spirit once resided, but in the irrational, nonsensical mind frame that grief has placed me in at times, I also could not personally bear the thought of my son alone, far away from us in some cemetery, in the midst of a downpour, or throughout the cold, icy winter, night after night. 

His ashes are with us. His memories are with us. His spirit is with us. We deeply miss our son...

This morning, I opened my "K-love Encouraging Word of the Day" e-mail and it read:

2 Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing..."
"12 God blesses those who patiently endure testing and temptation. Afterward they will receive the crown of life that God has promised to those who love him."
James 1:2-4, 12, NLT

The ways in which God speaks to us amazes me. Through this He reminds me that even during the downpours, trouble and trials, our faith may be tested, but it is only an opportunity to grow stronger in Him, and that somewhere down the road... much further than I can begin to imagine or envision right now, there again will be joy.

Wednesday, October 6, 2010

Nine too many...

Heaven has gained another sweet angel today and now little Joshua has a fully healed heart in the arms of Jesus. Please lift up his parents, Jill and Shane, and the rest of their family in prayer as they continue on this very difficult journey. 

Sweet Little "Joshie"

What a devastating week for the CHD community. NINE innocent lives have been lost this week alone to this monster, NINE! That is NINE too many. This week is another example of how desperately more research is needed in prevention and treatment of CHD as it affects 1 in 100.  

Monday, October 4, 2010

Sweet, Sweet Angel

Such sad news today; sweet Ewan Eliezer Petermann passed away in his mama's arms last night following a tough fight with CHD. Please pray for his parents, Kirsten and James, along with the rest of his family as they walk through this very difficult time.

Fly high little one.

Friday, October 1, 2010

Complete Surrender

Over the past couple of weeks, a handful of friends have "tenderly" asked about what actually happened on the night that we lost Aaron. I'm learning that grief is not a graceful journey, with emotions changing drastically from one moment to the next. Recounting this night has certainly been part of this journey of grief, so I don't mind sharing it with others. In fact, I had journaled this privately, just to get some of the details and thoughts out of my head, but also to remember.  I don't want to forget a single detail about our son or any part of his life, including the night that our world came crashing down. This is also the point in my life at which I learned what it felt like to completely surrender every last ounce of my being over to God. 

I don't know if this may be too much for some, but these are the details as I remember as well as my emotions, raw and honest.

At about 9:30 on Friday night, Dan gave into my prodding to go back to Children's Hospital one last time for the day to deliver my milk stash to the CICU and to spend some quality time with our little guy, in hopes that his anesthesia was beginning to wear off from surgery that morning. I had called Aaron's nurse several times throughout the day to check on his progress and they said he looked fantastic. Still, something was honestly and truly tugging at my heart to go and see him again that night. (Also, I must clarify- Dan only needed prodding because he had already had an extremely long and stressful couple of days as he was running back and forth between Children's and University Hospital; being separated as a family with a very ill newborn is awful. I have an amazing husband who took on the role of mom and dad to Aaron, caregiver to me and medical decision maker for Aaron as I had not yet been discharged and was only allowed to be there via "speaker phone" for all conferences with surgeons, cardiologists, etc.) 

So, we "snuck out" of University Hospital and Dan wheeled me over the Children's to love on Aaron a bit more. I cannot even begin to describe the pure joy and elation that overcame me each time I got to see my is a love that there are absolutely no words to describe. I have never been more proud of anything in my life. We spent some time talking to his nurse about vitals, meds, oxygen sats, his blue right foot and why it seemed to be taking him so long to come out of anesthesia. During this conversation, I turned to take a peek at Aaron over my shoulder, cut the nurse off mid-sentence and grabbed a hold of Dan. Aaron heard us talking and had opened his eyes for the first time...he was looking directly at us as if to say "hi mommy and daddy, I know you're here with me." I just about cried when I saw my sweet son's eyes looking over at us for that split second. We continued to spend time with Aaron, talking to him, holding his hands, kissing his fingers and toes and trying to let him know we were there with him in any way we could. I wanted more than anything to hold and cuddle him as I had not yet been able to, but at the same time, did not want to upset the machines, wires and tubes that were, in essence, keeping the delicate balance of his heart and body in check. 

We then spent several minutes meeting two other very special families and babies in the CICU, knowing that we would likely be seeing a lot of each other in the upcoming weeks. As we were in another family's room directly across the hallway with our back to Aaron's room, we heard many alarms going off and staff rushing around; however, didn't initially think much of it as that can be somewhat commonplace in the ICU. "Run, that's Aaron!" is the only thing I remember hearing. The image that I saw when I turned around will be forever ingrained in my memory. Amidst the 20+ people that were running into and out of his room, pushing carts in, calling surgeons, ordering blood stat and throwing out terms I have never heard before, I saw doctors performing chest compressions on our son. Our tiny little Aaron. My heart dropped onto the floor and so did I as I just sobbed. I remember Dan trying to get my attention and looking directly into my eyes "it's going to be ok; it's all going to be ok. They're working on him." I don't know how much time passed, but in watching those nurses switch off while doing chest compressions because they were getting tired...I lost it, even more. I have never felt so completely helpless in my entire life and I would have given anything to trade places with my son...anything

We were eventually escorted out into the waiting room where we literally fell to our knees and were surrounded in abundant prayer by those very special families whom we had just been getting acquainted with. They never left our side. I now understand what it means to fall to your knees in prayer; it is during times such as these that we fully surrender to God because we no longer have the strength to stand on our own two feet. It is during those times that He must carry us. 

We saw our surgeon run into the CICU, with a quick "I'll let you know what's going on when I find out what's going on" as he hurried in. We were moved back into an unoccupied room of the CICU as family began to arrive and then came the first update from our surgeon: "we opened his chest up to check the shunt; it looks beautiful and perfect. His hematocrit dropped severely and quickly, so he's bleeding...somewhere. Our next logical guess would be a brain aneurysm, so we will get him on ECMO (life support) and figure it out from there." Again, I don't know how much time passed; I only remember feeling like we were in a dream and thinking "this can't be happening". My head hurt from crying, my incision hurt from crying and all I wanted to do was run in and take my son and protect him from all that was going on; make it better and make this all go away. 

We continued to pray, unceasingly, for a miracle. We prayed the hardest prayer we've ever had to pray in our lives:   "Father, we pray for your will to be done for our son; we trust you, we love him, please don't let him suffer." Our surgeon returned with a somber look on his face. I so precisely remember his words and our cardiologist standing there, just crying. "We got him on ECMO. We decided to open his belly. He's been bleeding profusely into his abdomen. We can't stop it or even see where it's coming from. We don't know why.The machines can't keep up with his bleeding. We've been doing chest compressions for over 90 minutes. I'm sorry, but there's nothing more we can do." I don't have a clue what I said as we held each other and cried, but I remember what I felt: complete devastation, helplessness, emptiness, but peace. There was the slightest peace in the midst of our world crashing down. A calm and stillness that only comes from the presence of God. 

Finally, I got to hold my son. He was already gone, but we got to rock him, pray over him, sing to him and be together as a family, even if just for a short time. We missed out on those things while he was here with us, but while looking down on us with our Father, hopefully he could see how deeply and crazy in love we were (and are) with him. 

I would give anything to have had that night end differently, but God's will was for Aaron to be in a safe place, away from all suffering and filled with endless joy. "Skipping stones on the river with Jesus", as our Pastor put it. I know that I am still blessed in more ways than I could ever imagine and I have learned many, many things while walking through such a dark time in life:

I now understand that life is so very delicate. Our joyful day turned into complete heartache in a matter of seconds. 

I understand the perfect, unconditional love that parents have for their children.

I know that God has a plan from the beginning; our plans, our wants, our desires don't override His plan for us. There is a reason we went to see Aaron that late that night. There is a reason Aaron opened his eyes for the first time and looked at us. All in God's plan and timing...

I understand complete, absolute and utter surrender to God.

After having to stand there, absolutely and completely helpless while my son died, I truly have a new appreciation of God's perfect love for us; that He would give His one and only son for us, as sinners, honestly baffles me. 

Prayer Request

I truly believe in the power of prayer and miracles. Dan and I witnessed miracles happen with Aaron that were the result of prayer; there was absolutely no other explanation. For those prayer warriors out there, I ask that you please continue to lift up baby Ewan and his family in prayer. This sweet little guy has been through so much in his short life and they are now having difficulty weaning him off of ECMO (life support). His family has some very tough decisions to make in the days ahead; they need a miracle!
Designed by Lena