Today is POP Day, Put On Purple. It is a day to wear purple in honor of those who suffer from lupus. In all honesty, I would know nothing about this disesase if it were not for a dear friend of mine whose mother has it. I have asked her to share her story with us, not only about her mother’s illness but about how growing up with a sick mommy has made her who she is today.
What is lupus?
Lupus is a chronic, autoimmune disease that can damage any part of the body. Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs. Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues and creates auto-antibodies that attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.
…..Hmmm, ok. Try explaining this to a 2 year old, “No baby, mommy can’t play with you right now because she’s sick and doesn’t feel good.” I learned from an early age that my mommy was different from other mommys. When I was born almost 30 years ago shortly after my mom found out that she had Systemic Lupus. At first it wasn’t very serious. She was still active and could work a public job. She had her good days and bad days but nothing we couldn’t deal with.
Then the bad days started to out number the good days. The symptoms and effects of meds helped that along. I was a young only child with a sick mommy and a dad who worked and traveled doing ministry. So I did what any good little girl would do, I became mommy’s little helper. I would keep my room sparkling clean. I would even fix my own food and occupy myself with art or the occasional cartoon. I also became a “nurse.” When mom was feeling really bad I’d bring her a snack or play beside the bed so she wouldn’t be alone. Sometimes when I was really worried I would sneak in while she was napping, say a little prayer and make sure she was still breathing.
As I got older she had many complications arise over the years. She took chemo at one point to help get it under control. When I was 13-14 years old she had a stroke in her brain which caused her to seize and caused her to bleed into her spine and caused permanent nerve damage that still causes her pain to this day. Her Lupus attacked her kidneys which caused kidney failure. She was on dialysis for several years but came off, which is a miracle in itself. She had a minor heart attack. One of the heart tests they do with dye caused her to go on dialysis again which she now takes 2 days a week for 3hrs. From years of steroid use to help treat the Lupus and its effects she developed diverticulitis. She had a small piece of her colon removed and had to temporarily have a colostomy bag. (And boy was she happy that it was only temporary) These are just some of the “highlights” as they say.
“What a hard life”……..”What an awful thing for a child and her family to go through”…..”That’s so sad”……..are some of the responses I’ve heard over the years.
Yes it was a hard life sometimes. Having anxiety and stress at such a young age and worrying that your mommy might not be here tomorrow, sleeping with a spoon under your pillow because you were afraid that she might have another seizure and you needed to be prepared…….but something else happened as well. I became very independent. If I didn’t know how to do something instead of yelling, “MOM!!” I would figure it out on my own. I hugged and kissed my mom and dad goodbye even if they were going to the store and told them I loved them. I took the “don’t let the sun go down on your anger” verse very seriously. I always said I was sorry and forgave quickly. I cared about other people and tried my very best to “walk in their shoes” to understand their hurt and pain. I was thankful for a loving godly home and I trusted that no matter what happened God would take care of us and provide for us.
Today I am a 29 1/2 year old woman who loves my family and the Lord with all of my heart. I wake up everyday and ask myself, “Who needs a word of encouragement today?”, “What can I do to help someone else?”, “How can I show God’s love to someone?” I could’ve grown up to be an angry, selfish, bitter person who couldn’t understand why God would allow those things to happen to my family over and over and over again…..but I didn’t. I grew up to be a strong willed confident godly woman who tries to make a difference in someone else’s life everyday.
I also became very health conscious. 3 years ago I lost 55lbs and changed my diet and lifestyle. I did research and educated myself. I realized that I only have one body to get me through this short life and that I needed to take better care of myself. After all, I’m sure my mom would give anything to have a fraction of the good health that I have. Changing my lifestyle was to better my health, to honor my mom and to be an example to others.
While trying to write this piece the words of a song called “Blessings” by Laura Story came to mind: “Cause what if Your blessings come through raindrops, what if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? What if trials of this life are Your mercies in disguise?”
So what’s the moral of this long story???? When life pushes you down and stomps you and kicks you while you’re down there……..get back up and live your life. Tell your family and friends how much you love and appreciate them. Forgive and FORGET! Try to better yourself everyday. Serve others cheerfully. Smile. Laugh. Be thankful for what you have. Trust in the Lord and do His will and all the rest will fall into place.