My Cure for ARPKD/CHF 

By Linda Bevec

• Don’t let this disease define you or your life:  Living with any chronic illness can feel like a long list of labels and limitations.  Since my daughter was born I’ve feared illnesses caused by her weakened immune system (germaphobe mom here) and injury because of her enlarged kidneys, liver and spleen.  I have panicked about forgetting medications, worried about drug side effects, feared not being able to find organ donors, and nearly lost my mind trying to get her to drink enough water post-kidney transplant.  She was told not to play contact sports, not to be around sick children, not to eat foods high in salt, sugar or potassium, not to swim in lakes, rivers, or public pools, etc.  The first step in being the cure for your child is to realize this disease does not define your whole child.  My daughter is so much more than ARPKD/CHF.  She is a bright, beautiful, funny, courageous, musical, creative, teenage girl with big dreams.  She loves horses, Broadway musicals, messy hair, sweat pants, country music, alfredo sauce and vanilla lattes.  She argues with me about cleaning her room and practicing piano and probably spends too much time on Netflix.  Oh, and she happens to have an annoying disease called ARPKD/CHF.  I have no control over how this disease progresses, but I can control where I place it in the perspective of who she is as a whole person, and I refuse to give it top rank.  Unfortunately, I lost some precious moments of her being a “normal” kid, because I was preoccupied far too much with her being a “sick” kid.  She played basketball for 4 years, she rides and will soon own her own horse, she swims in Lake Michigan, and like most 14 year old teens she doesn’t always eat healthy.  I have learned to let many things go for the sake of her being so much more than this disease.

• Become an expert advocate for your child:  If you haven’t already, you must understand you are your child’s best, and sometimes only advocate.  Do your research, ask questions, organize medical charts and records.  Consult with other ARPKD specialists and parents (my personal lifeline!) and take notes at every appointment.  Question doctors, nurses, and anyone else who cares for your child.  Don’t be afraid to speak up, say what your child needs, ask for detailed explanations, or disagree.  We have changed hospitals and medical teams twice, because I did not agree with a recommended surgery or course of treatment for my daughter. Doctors may be the ones with the medical degree, but we’re all in this together and a good medical team knows you are their most valuable player if they truly have your child’s health as their priority.  You know your child better than anyone and you have something not taught in medical school; a mother’s intuition.  I have relied on my intuition countless times even when my husband disagreed.  And I was right.  Your first job is to be your child’s best advocate.  Your second job is to work yourself out of a job by teaching her how to become her own best advocate, and people wonder why you’re exhausted.  It’s a full-time job being an advocate, caregiver and navigator through a complex medical maze.

• Seek out and soak up joy:  I wish I had known this one much earlier. Don’t let the disease prevent you from experiencing all the joy of life with your child.  Joy abounds amidst even the greatest sorrow, and you have to grasp it before it’s gone.  I’ve experienced some of the most joyful moments of my life at the most critical times of my daughter’s health. And, I neglected to embrace joy in many of the simple everyday experiences of her life, because I was in the grip of fear over what will happen next.  Yes, with ARPKD/CHF there is always that concern for what will happen next.  It’s not over after the blood pressure is under control, or when your child has recovered from yet another infection, surgery or illness.  It’s not even over after a kidney or liver transplant. And it’s not going to be over after your child grows up and goes off to college.  This disease is life-long, chronic and progressive.  Fear can be paralyzing, but don’t get stuck there.  Michael J. Fox, who lives with Parkinson’s Disease once said, “If you fear the worst and it happens, then you’ve lived it twice.  If it doesn’t happen, then you’ve worried for nothing”.  Living through something fearful once is enough for me, thank you very much.  I’ve worked hard to face fear head-on with faith, and seek out the joy.  Just last month while in the hospital, my daughter was in a lot of pain and feeling blue because it was Christmas Eve.  A music therapist stopped by our room and asked if we wanted her to play a song. She gave us two hours of pure joy while she played the guitar, my daughter played the keyboard, and we all sang along.  Soak up the joy when you can!

• Live in the moment:  If there’s anything I’ve learned after 14 years as a mom with a chronically sick child it’s the cliché we’ve all heard: every day is a gift.  I can obsess over statistics on how many newborn babies don’t survive infancy with this disease, how long transplanted kidneys last, how many kids have GI bleeds, or how many children end up also needing liver transplants.  But we all know that any life can be cut short at any time, and for any reason. When I was 14 years old, my 18 year old brother went to work and never returned.  He was killed in a car accident two blocks from home.  I have two other children unaffected with ARPKD/CHF and just because they’re “healthy” doesn’t guarantee them a long and happy life.  Life is best lived in fully embraced moments of now, because anything can happen.  Yesterday is gone andtomorrow is never promised to any of us.

• Find your spiritual source of strength:  I’m convinced our greatest strength is discovered in our weakest moments of life when we realize we have no control and turn to rely on someone or something far greater. I’ve often said there are no atheists in foxholes or neonatal intensive care units.  You can’t do this on your own, and you weren’t meant to.  God didn’t punish our children with this disease.  He weeps when we weep for the suffering we endure in a broken world and He reminds us to rely on Him to carry us through those very dark and uncertain times.  Everyone suffers in this life.  Seek to learn and grow from it, and find your way through the suffering by asking God to walk with you and give you strength.  In the movie Evan Almighty, Morgan Freeman, who plays God says, “If someone prays for courage, does God just give him courage, or does he give him opportunities to be courageous?”  The challenges we face raising children with a life-threatening disease are opportunities to become many great things we otherwise may never be.  Many blessings can come from the tears we shed.

• Take care of you:  This is probably one suggestion I need to take to heart. As a mother of three children ages 10-16, a part-time job, volunteer work, afterschool activities, a household to manage and a husband who travels extensively for work, I don’t always take care of me until my body screams.  I enjoy long walks, a good book and cup of coffee, relaxing with family and friends, and spending time in quiet prayer.  But I don’t always work these things into my daily life. Oftentimes my body aches, my heart hurts, and my head is clouded by stress, worries and fears.  Taking care of you is the most important thing you can do…for your own health, your marriage, and your children. Make it a priority to find time for you.

• Hope for the best: Like the neonatologist who diagnosed my daughter 14 years ago advised, always hope for the best.  I hope to see my daughter graduate from high school, go to college, star in a Broadway play, fall in love, make a difference in the world with the light and love inside her and live a beautiful happy life.  I hope to see a medical treatment or cure for ARPKD/CHF before I leave this world.  And, I hope all those who struggle through the challenges and suffering of living with this disease learn to embrace and love the life they’ve been given; because all life is precious and full of hope.