Thank you, Conley.

Thank you, Conley.

Thank you for helping me become more than just an average mother. For making me a bad ass mother. The mother of all mothers. The ultimate, supreme mother. A superhero mother. A mother who has the ability to understand the true value of many things, in so many ways, that most mothers will never have the chance to learn. Thank you for being my son; my baby. For allowing me to be your mother. My aptitude for compassion and empathy exploded thanks to you, as did my knowledge for life and living. You taught me about myself and more about how to understand others. Death. Trauma. Loss. Grief. Postpartum Depression. Coping. Struggle. Surrender. Survival. Letting go. Moving on. Just to name a few. I've lived and mastered many of these, thanks to you. 

Thank you for making me a better mother to your brother. He benefits every day as a result of you teaching me how to be the best caregiver, especially for any chronically ill child. Lucky for us, your brother is not as sick as you were, but he still requires daily medical care. And I'm not just talking about viruses, colds, teething or temper tantrums; all those things that eventually go away and are developmental. Thanks to you, I appreciate those things, and embrace them. I like when I see a simple cold, or new teeth, or my son showing his will for life. I embrace these milestones, because those are healthy. Yes, they are still hard, and suck, but they are temporary. I'm talking about long term sickness. The ones that are diagnosed by a specialist and forever followed. But as far as I'm concerned, your brother is a piece of cake, because you taught me strength and courage. You taught me that I am capable, skilled and patient. You, Conley, taught me that I can handle whatever comes my way, especially when it involves my children. My tool box is overflowing and continues to grow as a result of the daily lessons you provide me. You see, your brother was officially diagnosed with Panhypopituitarism in February. Yes, during the midst of all the chaos with your cancer and chemotherapy. But, thanks to you, I am not overwhelmed, scared, shocked or in denial, like other mothers may be. I know the drill and I'm on it. Because you taught me to believe in myself and understand that this is what mothers do - they take care of their children, regardless. I just happen to be a mother who has a bit more on her plate. Daily medications, specialists, procedures, ongoing shots. I have tricks now, thanks to you. But his complications are nothing like what we encountered with you, and I am forever thankful for that. You always remind me that things could be worse; always. Always. So I'm thankful it is not worse. 

Thank you for showing me how to work through, and cope, with trauma. All my career, I have "specialized" in trauma work, helping guide others through trauma, yet I never knew the depth of their despair or heartache. I never truly understand nightmares, hypervigilance, flashbacks or sudden crying spells. Now, thanks to you, I get it. I live it. And my compassion and empathy has no boundaries. I see others in pain and my body aches for them. I can feel with them and understand them. I can relate to them. I have tools for them, that come from personal experience, and not just a book. Thank you for showing me that I did not fail. Not one bit. That no one else could have ever loved you the way I did, or allowed you to be the person you were. No one else could have openly and lovingly shared you with the world that way I did, or continue to do. Thank you for showing me that I loved you bravely, and that no one else could have replaced me. 

Thank you for teaching me about balance. Work hard, play harder. Thank you for teaching me that it' is okay to play. It is okay to rest, and take care of myself. It is okay to laugh even though I am grieving. Thank you for showing me that although life is stressful, and serious most of the time, that it is okay to smile and blow kisses. It is okay to make jokes about a serious situation. Thank you for reminding me that it is okay to be sad, and miss you. Because that means I am human. But also for showing me that I have so much to live for and many things waiting for me. Thank you for helping me remember that dwelling in a bad situation or circumstance is not the way I want to live. Thank you for inspiring me to help others.

Thank you for reminding me that it is okay to feel mad, sad, lost, confused, angry, silly, happy, content, guilty, etc. That it is okay to feel weak and powerless. Helpless. Hopeless. Selfish. It is okay to not want to keep going. Thank you for teaching me that letting go can sometimes be worth it. Thank you for giving me the power to know myself well enough to trust my instincts and my gut. Thank you for reminding me that I know myself, and I know my children, without a doubt.

Thank you for showing me how to look at life through the lens of grace. You taught me to walk through fire with poise. You taught me to keep moving forward, no matter how slow you walk, because life does not wait for you to start living. Thank you for showing me that there can be beauty in almost everything, even death. That I may have to look a bit harder, or dig a little deeper, but the beauty is there if I choose to find it. Thank you for showing me how many people care about and love you; love us. How many people care about and love me.



And lastly, thank you for teaching me about love. Unconditional love. Love that has no limits to pain or suffering. Love that guides you and carries you through the worst thing that should never happen to a parent. And by all means, thank you for loving me. Thank you for always allowing me to imagine your face when you looked at me with that love. The love that you knew I was there for you. The deep love that we all strive for in life. Thank you for inspiring me to keep living our life and loving with all I have, and also teaching me that it is okay to sit in the rocking chair in your room for hours and just cry for you. Thank you for reminding me that no matter what I do, that it is enough. Thank you for telling me to not be so hard on myself; that is okay to be vulnerable and weak. Thank you for loving me and for being my son.

Duality

Today marks one month since we said goodbye to Conley; a day we will never forget. This past month has brought many opposing feelings and thoughts. An experience our therapist labeled as duality; an instance of opposition or contrast between two concepts or two aspects of something. Thoughts where you are constantly talking yourself in circles; feelings or thoughts that are completely contradictory of each other. Thoughts that cannot exist in the same sentence, but express exactly what runs through every fiber in your body. One thought completely destroys the meaning of the other, yet you feel each of them 100%. Most of us have probably experienced this more than a handful of times, from a failed relationship or an important work decision, though typically, there is an option to change the outcome. What makes it harder is when you cannot change the outcome, and you have to live with the decisions you have made. 

For me, these thoughts have taken over. Thoughts like how I would not change anything about my final days with Conley and I would give anything to have one more day with him. How I would give anything to take back the last month of Conley's life as it was full of pain and suffering, and knowing that without enduring every day of the last month of his life, I would not have come to terms with letting him go. That I would never, ever want a parent to witness the constant suffering of their child and I wonder if anyone will ever truly understand what it is like to see your child deteriorate right before your eyes. And that every, single day, I miss Conley with all of my heart and I am so happy that I never have to see him hooked up to a machine again. Feeling hopeful hearing that other children survived medical battles and being so relieved that it is not me living with the future unknown and relentless complications. Wondering that if we just prayed harder, believed more, or surrendered longer, that Conley would still be with us, and also knowing that him "surviving" and being with us did not mean that he was actually living. 

Wondering that if we just prayed harder, believed more, or surrendered longer, that Conley would still be with us, and also knowing that him "surviving" and being with us did not mean that he was actually living. This one has come up several times for me; pretty much on a daily basis. Usually when I hear others speak of how "God is good" and praising God for "saving" people or making "miracles" happen. Or when I hear people say "give it to God." I know this goes back to a previous post I wrote when Conley was very ill in the hospital. This post talked about the concept of prayer and how it can be often be misused in society; specifically about praying for a certain outcome as opposed to the process. 

I often wonder if Conley's situation was our "test" to see if we would turn our fears and worries over to a higher power; and that we somehow failed, so the end result was his death. I see other families who are facing battles, medical, financial or personal, and they talk about "turning it over to God," and often times, they seem to get result they want; it ends up being "okay." It makes me think that maybe if we would have prayed harder, surrendered to a higher power, or believed more in a God, that we would not be those parents whose lost their child; that Conley would have survived. But what does surviving mean? Does that necessarily mean that he is living? Maybe a part of me knew I did not want him to survive this experience because I knew that his survival meant more suffering. Maybe subconsciously I did not pray or believe more because deep down I knew that surviving would hurt us all, every day, for an unknown amount of time. We would be grieving and hurting every day of our life waiting for the next crossroad. Knowing that Conley would never be the "healthy" chronically sick child that he was before.

And then I think maybe we did subconsciously surrender to a higher power; that maybe we were blessed with the result we prayed for; for him to no longer suffer. My previous post asked for people to "pray for Conley's comfort, that he does not suffer, and that he can allow himself to be free of any burdens that he may have, so he can rest comfortably," and asked others to "focus our prayers around Conley, and what would make his heart be settled, regardless of the outcome." After reading over this post, and remembering what it felt like to be in the moment staring at my child suffering and battling for his life, begging for his comfort, I think that maybe my prayers were answered. And not only is he no longer suffering, we were blessed with a beautiful, loving, genuine, uncomplicated, and unique transition to the next life. What if a higher power knew that Conley deserved to no longer suffer and that he had two parents that would selflessly let go so that he would never be in pain again? What if this was the outcome we wanted, even though it is never anything that a parent would really want?

Yes, these are the conversations I have in my head every single day. On good days, I can talk myself in a circle and come to a place of comfort; a place where I have no doubt in my mind that every decision we made was for Conley; to ease his suffering and renew our hope in life. On bad days, I agonize over how much I miss him; and how we should have held on just a bit longer; that maybe one more week would have changed the prognosis. I get stuck in the sadness and heartache. Allowing myself to just be in these days; to truly surrender and accept the sadness and grief is all I can do. Because I know that tomorrow is a new day, and Conley will remind me again of all the reasons we chose this path for him, and for us. He knew that we would do anything for him, even if that meant having to let go. Letting go means he is forever okay and will no longer suffer; our exact prayer every step of the way.

This is not the way it was supposed to end.

Loss. Death. Pain. Heartache. Grief.

This is not the way the journey was supposed to end. The Courage of Conley Duke was not supposed to end like this. Honestly, it was not supposed to end at all. Your hear of those "other"children, or "other" families, that deal with the loss of a child. You grieve for them, and pray for them, while subtly thinking that will not be how our story ends. There is no way that our story will end with our child dying. Yes, he is sick, and yes, he has lots of medical intervention to stay alive. But, that won't be us. It won't be my child. It won't be my family. It won't be me. I'd by lying if I said I was never one of those mothers who said that under my breath, or even out loud to my husband. That was them - not me. I remember thinking how I could not imagine what they are going through, and even how it is possible to lose a child. Well, now I know. Because I've joined that club. That club called child loss. It's a club I never wanted to join, and one I can never leave. I don't have to imagine anymore. Because it was my child, and now it's me. 

Everyone said that Conley was strong-willed, determined and a warrior, like his parents. That he was unbreakable. Conley gave us hope. He made us believe that anything was possible. He made us think that miracles were real and that prayers could be answered. Even during our darkest times, he pulled through with flying colors. Somehow, he pulled through. And that's what he did. Conley gave us a desire to push though the chaos; to just hold on a little bit longer; to sacrifice just a little bit more, because the rewards were there; in the end. Every painful moment and sacrifice ended with happiness and joy. Every single breath of advocating for him, and with him, made us stronger and ready to take on the next battle. Conley made us understand the true meaning of surrender and unconditional love.

Conley surpassed all expectations and survived things that doctors said would knock him down. They even said "CDC" for "Conley Don't Care." He had illness after illness, but he didn't care. Despite all of his medical complexities, he still smiled. He still laughed and waved to all the nurses and doctors. He still lived life without understanding or caring about any of these medical labels attached to his name. The Conley we knew got admitted to the emergency room for bleeding out in his belly with minutes to spare, and woke up the next morning waving and clapping for his surgeon, ready to take on the world.; ready to have major abdominal surgery; three times in a matter of days. We all know this picture. THIS was the picture that gave us hope and made us believe. He was the one who rolled around the hospital in his red car, waving to all the visitors and bringing joy to the other grieving families. Conley was the warrior we all wanted to believe. He was the one that amazed us all by his presence in the room even though he could not eat, drink, crawl, walk or speak. He taught us about being apart of the journey even though everything he did was operated by a machine. He was a warrior; a warrior that survived. He was smart, social, strong, and charismatic. He was supposed to be the one that gave way for others to believe this was all possible. That all this medical hype was worth it because the "end" would be so great. 

But, the story we imagined and expected somehow changed courses. Fast. Really Fast, but then again, really, really, painfully slow. And then, it was over. The story was over. His warrior story was over. He no longer survived surgeries or beat the odds. There were no more jokes about how Conley did not even realize he just had back to back major abdominal surgery. No more miracles or believing that he could get through it. No more prayers to be answered. Everyone hopes that their child will be the one that proves everything and everybody wrong. For a while, we were on this high that he was it; that he was the one that could make it. Conley had everything to be that child. Sigh. Big sigh. Then came the end of his journey. This is not how his story was supposed to end. 

And then I think that maybe that would be too easy. It would be too easy to believe that he would physically conquer everything; that he would warrior through every moment. That he would just defy all medical complications and science. Maybe that would just be silly. And too predictable. And we all know that Conley was not predictable. He wrote his own rules; even from the very beginning. And honestly, there are other "Conley's" out there. Other children with kidney disease or cancer who are surviving every day despite the multiple obstacles thrown at them. They are the miracles that show that a community of prayer works and invite others to continue believing in something that is bigger than themselves. There are other children defying all the odds and battling the science what says they should not survive. I thought that was Conley's story; our story, but it's not. That story ended.

We all know that Conley was strong, determined and fierce, but that was not all he was. He was also wise, selfless and honest. He was real, and raw, and true to himself. Everyone always said he was an "old soul." So, while maybe the story did not end the way we envisioned it, or how we had hoped, this is my time to rewrite the end to his story. (off topic, but a key part of processing trauma is to be able to rewrite the ending - another post). Maybe he was meant to be more than just a physical being on earth defying the doctors and someone to push through the hard times. Maybe he was meant to be someone who taught us about life and death. To teach us that sometimes letting go is harder, yet wiser, than pushing through. Maybe he was meant to tell us that sometimes, medical intervention can do more harm than good, and it is okay to say no when you feel you have had enough; and that no one has any right to judge your decision unless they have walked a day in your shoes. That everyone is fighting their own battle even if they are smiling and waving. Maybe he was meant to teach us that sometimes pushing through and praying for a certain outcome may not be worth it to the person who is actually the receiver of surgery or multiple medications. Maybe his story is also to teach us that each day is a blessing, and at any given moment, life could change; fast; really fast, so hold on to those small moments. Maybe he was supposed to teach us that labels do not have to mean anything. Just because you have labels associated with you, for one reason or another, it does not mean you have to BE that label. Labels do no have to define your behavior. Maybe he is supposed to teach us that we are so lucky that we got to write the end of his story, to be with him and savor him, for a few more days. Maybe his ending is supposed to teach us all about selfless, unconditional love. And maybe, just maybe, his story is supposed to remind us that tomorrow is a new day. And to let whatever you did today be enough. And just because it's a bad day, doesn't mean it's a bad life. 

The list could go on...and while this was not the way the story was supposed to end, that doesn't mean that it can't still be great. And it doesn't mean we have to remember it that way. We can remember it any way that we want. This is how I chose to remember his story.

"Know that no one can save you but yourself. You are the heroine of this sad story. You are the one who gets to decide how, and if, you’ll survive this. You are the one who will figure out a way to survive the sleepless nights, and the endless days. You are the one who will decide if and when you’ll find a purpose again that means something to you. You are the one who will choose how you’ll live with the pain. You are the one who will decide what you’ll to cling to, what will make your life worth living again. You, and only you, get to decide how you’ll survive. No one else can do this for you." - Angela Miller

New Blog

Like I mentioned, I decided to transition my previous blog, The Courage of Conley Duke, to a new blog. It took some time before I was able to come up with a blog name that truly captured what I wanted this blog to be about. Life after child loss. The previous blog captured Conley's journey, and our journey as a family, navigating through the life of chronic illness. Not just one illness, but several. Kidney failure, cancer, clotting disorder, just to name a few. 

Why start a new blog? 

Well, let's face it. Blogging under the title of The Courage of Conley Duke felt wrong to me. That blog was started as a means to update others on his medical status and journey, in addition to my feelings and emotions surrounding the chaos. And that is no longer the story I am telling. I wanted a fresh start; somewhere I could go to feel more open and welcome to share thoughts about the process of losing a child; losing a piece of you; forever. I wanted his courage to stay separate from my feelings of loss, despair and heartache.

Why the name?

As you can see in the picture attached, I recently got a tattoo of Conley's name and footprint on my wrist. I am so enamored by the artwork because that footprint is his; down to every shadow and crease. I didn't want the foot filled in solid black. I wanted it to be like his; exactly like his. And it is. People ask me if this is Conley's baby footprint. No, it is not. Conley was too sick when he was born to do footprints. To do anything baby like for that matter, like nursing, baby photos, etc. From the moment he was born, it was all about saving his life, and no one stopped to think, or really care about actually, his footprint. But, during his final week of life when we had time to do whatever we wanted, we were offered the change to finally do his footprint. And of course, we did. So, this is the footprint from his final week of life. What makes this tattoo even more amazing, is that that ink was mixed with Conley's ashes, and then tattooed on my wrist. Yes, he will always be a part of me, and in my heart, but now he is forever engraved in my skin. This tattooed has already served way more than it's purpose. It has become tradition for Choice and I to kiss Conley's foot before we go to bed. We say goodnight to Conley, and kiss his foot on my wrist. It's perfect. So, the name of the blog. This blog is a product of Conley; of his death, and our loss of a child. And there are so many things that I could write about, and I did not want a name that would limit me to a certain topic, because I had no idea where this journey will take me. And therefore, the only thing 100% accurate about every post to come, is that it will be inspired by Conley; it will be inspired by his loss. The ink, or words on this blog, are a result of his ashes. Ink Through Ashes.