I wanted nothing more than to be a mother and I became one on April 1st at 2:03pm to an 8lb 12.8oz baby. But my motherhood journey didn’t start or end the way I wanted it to or the way most mother’s experience.
I often go back to the days I had with Palmer and I so vividly dream of being able to rub my face up against his head of hair and take in the warmth and smell one more time. I think back on our daily walks to the hospital and our nightly rides home in Uber. I remember all too well the hours and days spent by his side in the hospital room letting him know I’m here and I’m so proud of him. I wanted to be there for him every step of the way and wanted him to know he wasn’t in this fight alone. And although most mothers get a very different experience with their children, I didn’t have the option to be a traditional mother where I got to hold him, feed him, and rock him. I instead had to find beauty in being able to hold his little fingers that weren’t bandaged up, brushed the ultrasound gel out of his hair in an attempt to “give him a bath”, kiss his forehead a thousand times a day, whisper in his ear motivation and love sayings, and stroke his little legs and feet. And although that was difficult to be okay with the fact that I didn’t get to mother Palmer in the traditional sense, I am so thankful that I even had the opportunity to be a mother to Palmer and I got to hold his hand and brush his hair.
And now Palmer claimed his wings May 17th, his 47th day of life, and it is very heartbreaking to lose my little boy, but I know it does me no good to let my sorrow get the best of me, so I instead look for the light through the adversity. Through this fight we have learned to stand strong with the Lord and trusting his protection and love. I still find beauty and joy in having the opportunity to be Palmer’s mother and find it necessary to continue to mother him in a very non-traditional sense to keep him alive in our hearts. I want to make Palmer proud because he made us so proud in his very short time on earth.
Surprisingly, these have been difficult words to find. I owe perfection to my son’s honor. I’ll give it a shot.
Palmer’s life has forever changed his parents’ lives, this I can say with 100% certainty. But as to how it will change the lives of others, this has only been answered in the immediate. Most of life’s problems are manufactured within our minds. As creatures of habit we as humans tend to latch on to the most pressing concerns of the few and adopt them as our own.
I’m still unsure as to why true hardship and disaster occur, at least in the manner Kristen and I have had to face over the previous months. If you are a person of faith, perhaps it is the argument for the presence of darkness in the world as a result of man’s sin. Darkness seeps into every aspect of our world, and we as the descendants of Adam and Eve must continue to suffer for the mistakes of a few. The reality is we all have a choice. We all choose what hardship is to us; and we all choose how to respond.
Do I still have anger within me? Yes! Do I want to shut this anger out completely? Not in the slightest. I know that anger is pain, and pain is love. Love and Pain fuel the world in which we live. True, unconditional love is very rare. We as people use the word love quite often. Some of us mean it, and some of us simply say it because we think it’s what we are supposed to say. There is often times a grey area with love; but there should never be a grey area when it comes to the love of your child.
Like many parents facing the struggles of having a fatally sick child, the not knowing, the loss, the pain, the excruciating love further exasperated by having to watch as your child is subjected to what most in the world would classify as torture, Kristen and I learned rather quickly about the difference of love and true unconditional love. There was no grey area. Everyday was pure torture. But just as Palmer’s tolerance grew for the drugs he received to manage his pain, our tolerance grew for the amount of torture we could handle. We grew used to looking at Palmer with the cannulas in him, with his chest open and the blood seeping out slowly. Our perspective on pain was transformed. We experienced a daily metamorphosis of the mind. With each new day and each new life or death decision, the pain we felt for Palmer and within ourselves hardened into the most intense form of love.
But with this new form of love also came a new form of pain and fear. Life, when lived on the edge, is often times a double-edged sword. We often live life cautiously. We limit what we feel, we attempt to smother our emotions, we avoid letting others into our minds and our souls because we are fearful of the pain that will inevitably occur. This was not an option with Palmer. The amount of love Kristen and I felt for Palmer, the instant we set eyes on him, meant there was nothing we wouldn’t do to keep him safe and keep him here with us. With every new day came a new, more intense level of love, and yet, with every new day we also faced a more real life realization of how truly dire the situation was. We were told with regularity of just how grave Palmer’s prognosis was, and just how unlikely it was going to be that he was going to survive. Hope was all we had. This hope was born out of love for our son and the love and support of family, friends, and complete strangers.
I’ve never had a greater muse than my Palmey Bear. I’ve never had a greater Why, a truer reason to live, and an inextinguishable fire burning in my soul. No matter what I do, from this day forth, I do it to make Palmer proud. I’m a better husband to make Palmer proud. I’m a better father to make Palmer proud. I’m a better friend to make Palmer proud. I’m a better business partner to make Palmer proud. I’m a better person to make Palmer proud. I choose to live life because Palmer wasn’t truly given the chance. Palmer is my inspiration. He is my heartbeat. I am Strong by name, but I am Heart Strong because of my baby boy.
I owe my life to Palmer. He’s unlocked something in me that I never knew existed. He introduced me to true unconditional love, hope, and faith. He gave me the ultimate perspective. I’m born anew in his image. We will never get to see him walk for the first time, hear his first words, or hear him laugh. We will never touch or kiss him again, but we feel him always, and he will NEVER be gone. His soul lives on, within us, within our actions and our words. To give in, to give up, and to quit would be to give up on Palmer. I promised I would never quit on my baby boy. I stared at him and whispered in his ear, “Daddy is so proud of you. You are so tough. You’ve taught daddy so much baby boy. Just keep on fighting. If you fight, daddy will fight ten times as hard. I love you baby boy, to the moon and back.” I said this and so much more in the 47 days Palmer fought for survival. And now, although gone, I can hear him speaking to me, “Daddy, I’m so proud of you. You are so tough. You’ve taught me so much daddy. Just keep on fighting. If you fight, I’ll fight ten times as hard. I love you to the moon and back.”
Palmer is Heart Strong! Heart Strong is Palmer! Heart Strong honors Palmer and all children battling against CHD and Heterotaxy Syndrome. I still have so much to learn, and with the help of many, because it is impossible to enact change alone, I plan to grow the awareness, grow the research, and simply help families that haven’t yet gone through this roller coaster ride understand what their options are. I want to help these families understand the true gravity of the situation before the Dr.’s have to inform them of this and it is then too late. Palmer may have lost the battle, but he has not lost the war, not if I have anything to say about it. But I need your help. I need Palmer’s Army.
When I was very young I wrote a poem. My father found this poem and sent it to me when Kristen and I were in the middle of this battle, alongside Palmer. I must have been 8-9 years old when I wrote it. Somewhere amidst the mire and muck of life I had lost the hope and the childlike nature and understanding of what IT is all about. But it was always within me, I just didn’t know. But one look at Palmer, one touch of his hand on mine, and one look into his eyes, helped me realize what life is truly meant to be. This poem is called Father of the Future, written by a much, much younger Palmey Bear’s daddy.
When Daddy was A little boy, He said he wished to be, The Father of A little boy
A little boy like me! So, here I am! And now I exist, Someday when I grow tall
I, too, shall have A little boy, With whom I can play ball. I’ll take him to
The zoo, where I Shall buy him a balloon, And when I am A spaceman, we
Shall both go to the moon!
Palmey Bear, Daddy is so so very proud of you. Daddy definitely thinks you look more like him, but if he had to venture a guess, he would have to agree, when you grew taller you’d look like both mommy and daddy. We can’t wait to see you again, to see how you have grown, but this time we are going to meet Way Way past the moon. Beyond the stars in the night sky, and beyond the galaxy, we will meet you in our forever place, just you, me, and mommy! We will have a lot of catching up to do and look forward to hearing all of your stories. We hope you will be proud of us, as proud as we are of you, this isn’t goodbye baby boy, it’s just see you on the flip side, on the other side of the moon.