Adrenal Insufficiency, Chronic Illness, Educational Info, Faith, Heart Disease, Medically Fragile, Parenting, Raising my Chronically Ill Son, Rare Disease, Special needs parenting

For Many Children Birthdays are Another Year of Beating Death

Most parents get excited for their child to celebrate another year, a day of their birth, and a successful completion of another trip around the sun. Parties are planned, invitations designed, decorations picked out to match a theme, cakes ordered or baked, and food prepared to celebrate the special day. Images of the day will flood facebook as soon as the party end. There are looks of complete joy as the child rips into packages that are filled with magical toys, books, clothes, or electronics. Videos will pop up on our feeds the lights will be dim, candles are blazing in front of a happy child’s face, and people are singing Happy Birthday. We watch the child blow out the candles, everyone claps, and we all are so grateful for another fantastic celebration of life.

Everything about birthdays just feels so incredibly typical, traditional and a general right of passage for each child as they go through their childhood. However, there is a population of families, like ours, where birthdays are anything but typical or guaranteed. Thousands, maybe millions of families around the world, are raising children with life-threatening diseases, and each year that passes doesn’t mean the child is one year older, it says the child SURVIVED ONE MORE YEAR. Around the world, some children are battling diseases that could take their lives at any point in time. The fact that they survived one more year is not only a miracle but a testament to their strength, determination to thrive despite impossible circumstances, and for many, it is due to the hard work and dedication of their parents and loved ones who do not give up on them.

My son is one of those miracles. He is a child that has thrived despite numerous illnesses that could kill him on a daily basis. His body is effected in multiple systems, and we are managing nearly all of his hormone levels via medications. At the tender age of three months old, he suffered an adrenal crisis that almost killed him. When I say he was close to death, I am not even beginning to exaggerate. I sat next to his bed in the Pediatric Intensive Care Unit, and I witnessed him hooked up to more machines than I had seen in my life. He was severely hypothermic at 91 degrees, his blood sugar was only 7, he was in full respiratory failure, liver failure, cardiac arrest, his blood was no longer clotting, and he was surviving only because of machines. Back then I was naive about the magnitude of his illness. I remember thinking this will just be a bump on the road, and he will pull through and be fine. I didn’t realize the sickness would be something we would live with for the rest of our lives.

When I look back at that day, I wish I could have pinched myself and woken myself up to realize how seriously he was sick. That illness has set the tone for his entire existence. His doctors still have no idea how he survived. I know how that he survived because God had grander plans for him and God still needed my son here on this earth. I was on my knees for hours those days on life support, and we had people around the world praying for him. All of us worked together to request a miracle, and our prayers were heard. However, our answered prayers do not mean this life has been without challenges. I had no idea that by asking for that miracle, it would mean that I would become a mother to a medically fragile child that would need daily support to live.

Over the past five years, doctors have remained puzzled that he thrives despite his weak and fragile health. He has no pituitary gland, a heart that is damaged from the adrenal crisis, numerous neurological issues, developmental delays, and he is 100% tube fed. He speaks, has average intelligence, has an infectious smile, inspires hope in everyone that meets him, and is one of the happiest children most people ever encounter. Even as we have added diagnosis over the years, we have always managed to learn how to manage all facets of his health. We give multiple medications, take care of a feeding tube which means feeding and burping him through a tube, have more than ten doctors, and attend therapy weekly to help him learn. Every single day that he survives is another day we have won. We don’t measure our time with him in years, but we measure our time with him in seconds, minutes, hours and days. My husband and I are keenly aware that at any time all of this could be over. We know at some point his illnesses will win, and he will eventually die of one of the diseases that are ravaging his body.

As the sun rises on the day of his fifth birthday, we are reminded that the three of us have conquered one more year of his life. We have gone through thousands of pills, 1800 daily injections of growth hormone, multiple surgeries, hundreds of blood draws and labs, countless hospital stays and ER visits, thousands of diapers, and more formula than I care to count. On the horizon, we know that open heart surgery is imminent and he may need brain surgery to fix multiple neurological issues. However, today none of those things matter. He survived to be five years old. An age his pediatrician wasn’t sure he would ever hit. He has beat the massive odds that have stood in his way, and he has taught me what it means to be a fighter, resilient, happy despite enormous obstacles, and strong despite failing health.

Today I encourage all families of children that are fighting life-threatening diseases to stand up, lift their heads high, and clap their hands with enthusiasm. Today isn’t just any other day, but one more day you got through the impossible, proved doctors and therapists wrong, and get to spend one more day with your child. None of us know when it will be over, so cuddle your blessing, kiss their face and thank God that you have the strength to keep fighting. No one said this would be easy, but all of us know that our kids are worth all the appointments, medical expenses, blood, sweat, and tears it takes to keep them alive. Our children deserve a chance to teach the world what it means to inspire HOPE. You deserve a moment to celebrate the fact that you have made all of that happen.

 

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