Kelli Gruen

@kelli-gruen | contributor
Kelli is the wife of an incredible, hard-working man, and a work-from-home mother of two amazing identical twin girls + an adorable little boy. Although genetically identical, her girls are medically very different. It’s recently become Kelli’s passion to write about their experience as a special needs family.   
Kelli Gruen

The Challenges of Parenting a Medically Complex Child

Our daughter is incredible. She’s inspiring. She’s tough. She’s brave. She’s strong. She is an adorable 4-and-a-half year old living with three rare conditions: Goldenhar syndrome, caudal regression/sacral agenesis, and VACTERL. We are not new to the world of disability. Each new diagnosis brings fear, questions, heartache and pain. And it never gets easier. Just a few days ago we were blindsided with news that we are still trying to process. Another diagnosis. This time, it’s her heart. What was supposed to be a regular check-up, turned into our worst nightmare. How naive of me to think we could just walk in to that appointment and come out scot-free.How naive of me to think that we could just have an easy appointment. And how naive of me to think I could handle all of it. Ashlyn was diagnosed with left ventricle non-compaction cardiomyopathy (LCVN). This condition seems to be wildly different for each person who has it. The doctors even said, “I can’t tell you what this means for your daughter’s life.” He explained she could live to be an adult before intervention is needed, or she could need a heart transplant in two years. He can’t tell us because he doesn’t know. Ashlyn is at risk of cardiac arrest or heart failure, and as I’m typing this, I still can’t believe it. No diagnosis has been so hard to hear. My mind runs, and my thoughts go from one extreme to another. I remind myself that it’s not easy being a medical mama. A medical mama knows a little about a lot. She knows to expect the unexpected. She’s knows that appointments will run long, and patience will run thin. She knows the torment of seeing her child in agonizing pain, and at times, being helpless in taking the pain away. She knows no appointment is “safe,” and that even a regular check-up can stop her in her tracks with a new diagnosis. She knows how to hold her head high long enough to get to the car, where she crumbles in heartache. She’s changed her grown child on a public restroom floor, because her child doesn’t fit in a baby changing station. She’s been judged by “typical” and mothers of kids with disabilities. She doesn’t quite fit in with either, because her daughter “looks OK,” but not quite “normal” enough. She’s administered endless amounts of medicine, learned how to do catheterizations, and is an expert on everything to do with her child. She’s perfected the art of covering ostomies and trying to rig medical devices and supplies to get them to work for her child She spends hours on phone calls, at appointments, planning surgeries, going to therapies, missing work, and working overtime. She stays up late and wakes up early, researching studies, specialists, information and statistics for each new diagnosis. And with each new condition, she wonders how much more her child can endure — and how much more she can handle. She’s felt alone. Isolated. She’s felt incapable. Out of control. She’s neglected herself. Perhaps for too long. She’s felt five different emotions in a single minute. Yet, she puts on a smile every single time. If she can’t be strong, who can? If she can’t hold it together, who will? A medical mama knows how to fake it until she makes it. She has absolutely no other choice. But for her children, she will do it all. And she will do it over and over and over again, because a medical mama’s love knows no boundaries. If you’re a fellow medical mama, please have hope. Our daughter has defied many odds, and has over come every single one of them. I have hope and faith that she will overcome and defy the odds yet again. Without hope, we are nothing. In the meantime, find what calms your soul. Find your escape. For me, today, it’s writing. It’s my therapy, and these words are an extension of my heart. To all the medical mamas out there: you are not alone. I see you. I sympathize with you. Keep doing your best. You are amazing.

Kelli Gruen

The Challenges of Parenting a Medically Complex Child

Our daughter is incredible. She’s inspiring. She’s tough. She’s brave. She’s strong. She is an adorable 4-and-a-half year old living with three rare conditions: Goldenhar syndrome, caudal regression/sacral agenesis, and VACTERL. We are not new to the world of disability. Each new diagnosis brings fear, questions, heartache and pain. And it never gets easier. Just a few days ago we were blindsided with news that we are still trying to process. Another diagnosis. This time, it’s her heart. What was supposed to be a regular check-up, turned into our worst nightmare. How naive of me to think we could just walk in to that appointment and come out scot-free.How naive of me to think that we could just have an easy appointment. And how naive of me to think I could handle all of it. Ashlyn was diagnosed with left ventricle non-compaction cardiomyopathy (LCVN). This condition seems to be wildly different for each person who has it. The doctors even said, “I can’t tell you what this means for your daughter’s life.” He explained she could live to be an adult before intervention is needed, or she could need a heart transplant in two years. He can’t tell us because he doesn’t know. Ashlyn is at risk of cardiac arrest or heart failure, and as I’m typing this, I still can’t believe it. No diagnosis has been so hard to hear. My mind runs, and my thoughts go from one extreme to another. I remind myself that it’s not easy being a medical mama. A medical mama knows a little about a lot. She knows to expect the unexpected. She’s knows that appointments will run long, and patience will run thin. She knows the torment of seeing her child in agonizing pain, and at times, being helpless in taking the pain away. She knows no appointment is “safe,” and that even a regular check-up can stop her in her tracks with a new diagnosis. She knows how to hold her head high long enough to get to the car, where she crumbles in heartache. She’s changed her grown child on a public restroom floor, because her child doesn’t fit in a baby changing station. She’s been judged by “typical” and mothers of kids with disabilities. She doesn’t quite fit in with either, because her daughter “looks OK,” but not quite “normal” enough. She’s administered endless amounts of medicine, learned how to do catheterizations, and is an expert on everything to do with her child. She’s perfected the art of covering ostomies and trying to rig medical devices and supplies to get them to work for her child She spends hours on phone calls, at appointments, planning surgeries, going to therapies, missing work, and working overtime. She stays up late and wakes up early, researching studies, specialists, information and statistics for each new diagnosis. And with each new condition, she wonders how much more her child can endure — and how much more she can handle. She’s felt alone. Isolated. She’s felt incapable. Out of control. She’s neglected herself. Perhaps for too long. She’s felt five different emotions in a single minute. Yet, she puts on a smile every single time. If she can’t be strong, who can? If she can’t hold it together, who will? A medical mama knows how to fake it until she makes it. She has absolutely no other choice. But for her children, she will do it all. And she will do it over and over and over again, because a medical mama’s love knows no boundaries. If you’re a fellow medical mama, please have hope. Our daughter has defied many odds, and has over come every single one of them. I have hope and faith that she will overcome and defy the odds yet again. Without hope, we are nothing. In the meantime, find what calms your soul. Find your escape. For me, today, it’s writing. It’s my therapy, and these words are an extension of my heart. To all the medical mamas out there: you are not alone. I see you. I sympathize with you. Keep doing your best. You are amazing.

Kelli Gruen

I Accept the Fact That My Daughter Will Always Need Medical Care

It’s been two years since this amazing, unpredictable journey into parenthood began. You could say we were slightly unprepared for what we were in for. Never did it cross our minds that there could be a health issue with one of our children. We had more than 40 ultrasounds and scans during my pregnancy. Our identical twin girls are a rare form of twin known as monochorionic monoamniotic (also known as MoMo twins), which means they had skin-to-skin contact in the womb. Their cords were tangled in two true knots, all while raveled up in a mess of umbilical cord. I spent 60 days on hospital bed rest, patiently awaiting their arrival. Not once in a single scan was there cause for alarm about our babies themselves. The only concern we were aware of was the very unpredictable knotting and entanglement. Other than that, our babies were small and perfect. We finally welcomed our girls in to the world. The day they were born was the best day of our lives, but something was off. We immediately knew that something wasn’t right the moment we saw our sweet “Baby A.” The doctor’s urgency in getting her to the NICU didn’t go unnoticed either. And so it began — looking forward to what’s next. I’ve spent the last two years of my life looking forward to the next “something.” The next doctor appointment, the next scan, the next test, the next procedure, the next surgery, the next question and the next answer. From the very moment we left the doctor’s office, I was focused on the next appointment. When I walked out of therapy with my two babies in tow, I was looking forward to the next meeting. The second we had any test or scan done I was looking forward to the answers. The moment we got the answers I was looking forward to whatever intervention or doctor we needed to see after that. I lived with the mindset that eventually this would be in our past, and I would no longer be living for the next “something.” Now here I am two years later realizing there will always be “something.” It’s taken me two years to realize and accept that there is no finish line. There is no one appointment or procedure that will magically send us on our happy way. There will always be another appointment. There will always be another test, another scan. There will always be another surgery (as confirmed by our doctors at our last appointment). Our daughter will have many surgeries in her lifetime. I’ve made the decision to change my mindset. To be present. To just be “OK.” I have to stop myself from dreaming of the finish line with all of this. There is no finish line for this. I have to embrace and know that there will be a lot more challenges for us, for her. What I am trying to remember, though, is that it’s OK. We will be OK. She will be OK. We don’t need to have a finish line. We need to just be. Be happy. Be strong. Be grateful. Be willing to embrace this unpredictable and fun life. With the help of our sweet girls’ silly personalities and beautiful spirits, we will surely be OK. This right here is our “something,” and I vow to be present, willing and ready for anything that may come our way. We want to hear your story. Become a Mighty contributor here.

Kelli Gruen

Hearing 'I'm Sorry' As a Special Needs Parent

Kelli’s daughters. Two years ago I had the honor of meeting one of the sweetest, most loving, cute, incredible, strong and down right most amazing human beings. Our meeting didn’t go quite as planned, but the second I saw her I knew she was special. She exuded pure light, as if her soul was shining from within. She changed my life forever, for the better. Her name is Ashlyn, and she’s my hero. She has special needs, and she is my daughter. Some people dream of meeting their favorite heroes, I was lucky enough to give birth to mine. Ashlyn. Ashlyn was born with not one, but two rare disorders, and lives with disabilities that will affect her everyday life, for the rest of her life. But please, don’t be sorry. It took us almost two years to get Ashlyn’s diagnoses. It was a long two years, with more tears and sleepless nights than most could bare. I would lay on the floor next to her crib at night and just cry. Why her? Why us? Why can no one give us any answers? But then the day finally came. After an extensive spinal, brain and skull CT/MRI, we finally had diagnoses. It was as if a weight was lifted off our shoulders. We finally had the answers we longed for. Having answers meant we could begin the care plan, treatments, therapies, appointments and interventions we needed to give her the best chance possible at living a “normal” life (Is there such thing?). We immediately began updating family and friends with all the news we had received. I knew they would be elated and so happy we had answers, but what I wasn’t prepared for was the response we got. “I’m sorry.” Now, I don’t believe these comments came from a negative or mean spirited place. I truly believe this was the response people had because they didn’t know what else to say. I mean, I get it. Ashlyn. What do you say to someone who just found out their child has a condition that can’t be corrected by a procedure, and will live their entire life with a disability? Not “I’m sorry.” My daughter is perfect, regardless of any diagnoses. She might not be on the same sports team as your child, and she might not be able to run and skip with kids her age, but that’s OK! She will excel in her own ways, and her father and I will be gushing with pride every step of the way. She is silly, kind, fun and smart. She is like no one else I have ever or will ever meet. She’s a miracle and everyday she surprises us and doctors with what she has and can accomplish. She has the sweetest voice and the cutest giggles. Her crooked little grin can put a smile on any ones face. She has taught our family more in the last two years, than I learned in my entire 30 years of life before her. She is one of a kind, and she was given to us for a reason. There is nothing for any one to be sorry about. She has blessed our lives beyond measure. I am a special needs mom and I am proud of my daughter. Our family. My life. So please, don’t pity us. Don’t be sorry. Just be supportive. Our journey may be different than most, possibly more challenging, but we are up for the challenge, and we wouldn’t want it any other way.