"When destiny calls you, you must be strong.
I may not be with you, but you've got to hold on.
We'll show them together, cause you'll be in my heart.
Yes, you'll be in my heart...now and forever more."
|| phil collins - you'll be in my heart ||
Last August I received an email from someone I had never met or heard of named Ashley. She was a Neonatal Intensive Care Unit Photographer in Fort Myers, Florida with a ministry of sorts called "Ounces of Hope Photography" in memory of her son that passed away as an infant. It's basically a group of photographers who come do photography for parents whose little ones are struggling for life in the NICU. She had stumbled upon my blog posts about my preemie cousin, Atlas while searching for Dallas NICU photographers. She said an online friend of hers named Diana from El Paso had just given birth to a full term, 7 pound, beautiful baby boy named Kaden. Just the previous May, Diana had given birth to identical twin boys, Preston and Julian, who tragically were born at only 20 weeks and lived only a brief amount of time in their mother's arms. Afterwards they suffered a failed adoption before finding out they were pregnant with another son! So Kaden -- healthy, full term, nothing-could-be-more-perfect, never-to-replace-the-twins-but-definitely-a-balm-for-the-ache Kaden was what some would call, their "rainbow baby." His first days were blissful and nothing but a sigh of relief. After so much unbearable pain...he was here. Breathing, living, growing, thriving. Everything was as it should be. But then...it wasn't.
It had been a long, high risk, and very hard pregnancy and yet it appeared nothing had affected this little guy. It was as if "despite it all" he had come out completely and totally unscathed! In fact, though he was in the NICU, it was for precautionary purposes only and they were preparing to go home! It was on that day that through a sudden sickening whirlwind with beeping monitors and doctors with furrowed brows and test results, it was discovered that Sam and Diana Stone's "rainbow baby" had a hurting heart. Kaden’s heart wasn’t pumping almost any blood out of his lower ventricles into his body. While his stats were actually good, the definition of this was heart failure. The doctors there at Children's Medical Center in Dallas were telling them that a small chance that the heart could heal itself was possible. Small, but possible. More than likely they were looking at him needing a heart transplant. Their life with a perfectly healthy rainbow baby had come to a screeching halt and their life with a son in very critical condition was only beginning.
And this is why Ashley was contacting me. Kaden's first days had taken a dark turn and now each day had turned into a tangible and fleeting treasure. She was frantically searching for someone, ANYone to go photograph this precious blessing. This fragile human, this eternal soul, this diseased and tiny body who had a story of worth, and value, and purpose. It needed to be documented...and somehow, through God's Providential means of Google, I was going to be the one to document it. I told Ashley I would be honored, she gave me Diana's number, and within a couple of hours I had arranged a trip to Dallas the next day. He was born on August 5, 2013 and I came on August 17. For almost two weeks, Kaden Isaiah (which means "Fighter" and "God is Salvation") had been making his tiny and yet profound mark on the world and burrowing his way achingly deep into his parent's hearts. When I stepped into his hospital room, it was hauntingly drear and confusingly peaceful. I was stepping on what seemed to be the very balance of life and death and it was nothing less than hallowed sacred ground.
As I walked in, Sam and Diana's love was a force -- present and palpable, that seemed to engulf the entire room. They had seen the utter depths of each other and were clinging fiercely to each fiber and heartstring in their spouse. There I saw them, two people who had been highschool sweethearts, a military couple, parents to a quirky, dinosaur loving, inquisitive toddler aged imaginer named Bella, parents who watched their twin boys take their last breaths, parents who were fighting to cherish their new son who's homecoming trip had slipped through their fingers like sand in a hourglass. They had a bond of tear and bloodstained strength, a cord of love as tough as steel and yet as tender as silk. The weight of their sorrow and tenacity and adoration and fight and exhaustion and desire was suffocating and warm like the thickest blanket on the coldest night.
Elephants were Kaden's "theme." The plan was for them to adorn his nursery at home, but instead they were found scattered about his hospital room. Wherever they had to celebrate and welcome him during his first days, it would be done.
The amount that Sam and Diana had been able to hold Kaden since his condition had been discovered had been slim to none. But God, who does all things right, and well, and special, and purposefully had it ordained that the very day I would come to take pictures was a day that they were allowed to hold him. A few days afterwards, I received an incredibly thankful text from Diana who said they hadn't been able to hold Kaden since then and so they were so thrilled that I had been there. <3
Seeing a loving mother with her child -- no matter how helpless, or scared, or confused, or tired, she is -- is one of the most powerful things. In that moment she didn't have to be "Diana the mom who knows everything", "Diana the mom who has all the answers", "Diana the mom who can take her son's sickness away", "Diana the mom who could reverse or erase all the bad happening around her"....she was just, "Diana. Kaden's mom." And that was not just okay, it was enough. And not in a reaching on your tiptoes to brush the top of what you're grasping for kind of way...in a full belly, exact change, perfect fit kind of enough. In fact, even a cup overflowing, abounding, over and beyond kind of enough. Diana couldn't heal Kaden, but she could love him with every breath, and thought, and bone in her body. She could fight for him with every question, and prayer, and "I love you." Sam and Diana made it very clear that Kaden wasn't just "liked" or "appreciated", he was desperately wanted. Their prayers for a miracle were not half hearted but a painful begging and pleading. Their souls yearned for their son to be healed with an all consuming thirst. They sought God in their dark path and clung tightly to him, trusting that His way would be right in the end.
When I came Kaden had already had several procedures to try and stabilize him. For the most part he seemed to be doing incredibly well. he was critical but appeared to be on a slow uphill battle and not a downhill spiral. As the days passed on after I left, Kaden's condition fluctuated violently. It was like from second to second he could be equally as likely to be rushed into an OR for a heart transplant as he would be struggling to live. As I faithfully followed Diana's blog updates, I had a catch in my chest every time she posted. He was being prayed for so hard by so many. They had found out he had a very rare virus called HHV-6 that had caused the heart condition. As answers became clearer, his status worsened. They had their daughter Bella come from El Paso to Dallas to meet her brother. Diana spoke with such reality and honesty about her pain, her anger, her desperate aching for a miracle. She was confident that God was sovereign and had a perfect plan but she was a mother who indescribably wanted this baby boy of hers. On August 26, 2013 Kaden Isaiah Stone breathed his last breath. He passed just as his older brothers had....nuzzled and snuggled in his Mama's arms. He was perfect. He was wanted. He was loved. He was fought for. And yet, he was still gone. But so was his pain. So was his struggle. He had skipped past the veil that separates this world from the next and he left his grieving parents and sister and family behind. His pain was over, but their pain was deepened and intensified. God's plans are not always the prettiest. They are not always the breath of fresh air, the silver lining, the sweetest aroma, or the coziest embrace. God's paths are often rocky -- they tear and bleed and scratch, His paths are often cold -- we shiver and catch fevers and grow numb, His paths are often bleak -- we cry hard, and hurt deep, and misunderstand everything, His paths are often dark -- we trip because we can't see, get afraid of the blackness, feel incredibly alone. But His paths always lead us rushing straight to Him. The rocky paths lead us, banged up and bruised, to Him -- the Great Physician. The cold paths lead us into His warm arms of protection and comfort. His paths of bleakness lead us to His throne of grace and mercy where He scoops us into His arms of love. His paths of darkness lead us to His shining light that drives out all the dark and leads us on to perfect eternal day.
"He’s no longer a name or an event or an “in memory of”. He’s my little, tiny, 7lb 6 oz son who made noises and looked at me and turned his head towards our voices and had a whirl of hair in the back like Bella did. He had a crib that still sits in the guest room, clothes that are packed away with tags on. He was so perfect, so wonderful, so wanted and loved. We are going to live with this forever. Preston, Julian, Kaden. I will never get over this. I will be an old woman and I will still long for them and what was supposed to have been with their little lives. This isn't me wanting more children or not appreciating Bella – this is a mama grieving for the little boys she wanted so much. I cling to Jesus in these moments...."Thou He slay me, I will hope in Him" - Diana on what her everyday is like now.
October is Infant Loss and Miscarriage Awareness Month. Today I was on the phone for over an hour with my mother who was weeping. What was on her mind? Three little ones whose name, and sex, and face she never got to know. 9 weeks growing in her womb is something they all three have in common as well. They were so celebrated, and so wanted, and so loved. They were as precious to us in the moment as any freshborn baby is. They were just as appreciated and delightful as any 8 month old I see cooing, being pushed in a stroller that I pass on the street. Their personhood was just as important and real as Kaden's. And though my mother can't put a face to them, she grieves and mourns the loss of each little soul whose bodies were once multiplying rapidly inside her. Our wedding photographer, on May 10, shot our wedding with grace, and professionalism, and personality, and talent, and spunk, and care. 6 days before that, she had given birth to a 14 week old son named Ryan Day who never even took a breath of earth's air. I did not know it at the time, but when I found out soon after, my heart threatened to break in two. I can name woman after woman who I am acquainted with to different degrees who have little ones who are dually represented by a positive pregnancy test and a grave. Today, on the last day of this month, I want to "make a big deal", and celebrate, and praise God, and rejoice over each and every one of these babies. Ones whose eyes only saw their mother's wombs, ones whose eyes opened to Earth for only a short time, and ones who hadn't even gotten eyes yet! From conception to full term, to a few hours on Earth, to a few weeks....these babies have their names written on the hands of God. They have a purpose and a place in Heaven's Kingdom. They are wanted and loved on earth in a small trifle of a way compared to how much they are wanted and loved in Heaven. We might not be able to see why these babies dying was necessary, but I can assure you, these babies living must mean something to their Creator. One day, I have confidence that I will meet my little siblings....I don't know what that'll be like. I don't know what my relationship to them will be, I don't know what they'll look like or how I will even know. But it will be so dizzyingly right that my soul does cartwheels just thinking about it. Much love and prayers to every woman and family that has been touched and affected by infant loss and miscarriage in some way. These tiny lives are some of the best representations for the vapor that this life is. They are never forgotten....always cherished....forever loved.