What parent wants to accept that their child could possibly die before them? I’m mom to a 22-year-old who has lupus nephritis. For the past five years, she has been receiving peritoneal dialysis 10 hours a day because she has no kidney function and needs this life-saving treatment to filter out wastes in her blood. A mother’s love is the most precious gift, yet the gift of life is so much more.
As a lupus warrior and registered nurse, I understand life dealing with a chronic disease; I’m constantly educating my nursing students and patients on how to deal with chronic illness and have some sort of quality of life. But as a mom with a child suffering from lupus, end-stage renal disease, and heart failure—a child who needs a kidney and heart transplant—I grapple with the reality of not having control in a losing battle.
Since my daughter was ten, I’ve tried my best to instill in her to be strong, resilient, and a vessel for spreading lupus awareness. Yet I’ve watched her as she lay in an ICU bed; I’ve seen her face when she’s been told her heart only has 25% functionality, and inside I crumble. I’ve witnessed her struggle to breathe, deal with intolerable pain, and ask God to just take her away to avoid the suffering. No matter how much I tell my daughter to be strong, I’m not in her shoes; I’m not dealing with the possibility of death at an early age or entertaining the thought of never having kids.
She refuses therapy to help deal with her emotions because she says nobody understands. Putting on my nurse’s hat, I try positive affirmations with her; I let her know that although she is going through a lot, there are others who go through even more. I will never know the feelings she deals with; it must be overwhelming not knowing when your health will totally fail beyond hope. But I’ve always stressed to her that she has lupus, lupus does not have her; that usually goes right over her head.
My daughter has worked since she was fifteen; she bought her own first car; she graduated high school a year early; she had a 4.0 gpa her first semester of college. Together we created the first lupus support group for children in the state of Michigan. Yet I constantly struggle with keeping her motivated to persevere and push through till better days.
Through it all she has taught me so much, lessons learned that I will treasure forever. First is to believe in God, understanding that this is His plan and accepting all that comes with it. Second is to be true to yourself; set your own expectations for how your life is to be lived. Third is to accept no excuses; she does not let her health impede daily activities like work or chilling with friends and family. Fourth is to keep hope alive; as we wait for her to be placed on the transplant list, we stay optimistic. Lastly, create experiences; whether it’s a trip or an adventure, we are refusing to just sit around and let life pass us by.
For all the parents reading this who have children with chronic illnesses, allow your child to smile, cry, vent, grieve, and to live. We are not in their shoes and can only carry them so far, but they must know that we will always be there for them. As we prepare to get on the transplant list, we are committed to creating memories and opportunities that will have positive impacts.
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