I could fill a dozen posts telling you all about the beaches and mangoes of the Philippines, and a dozen more wrapping up my last few months in Korea, but life has sent me on a whole new adventure.
Although this new adventure sent me straight home, it has many similarities to traveling a foreign land. Everyday is full of unexpected challenges. I'm learning a new language full of prescription names and medical jargon. Everyday I try to find my way, and somedays I just feel completely lost.
My life today now revolves around dealing with my mom's illness.
I have decided to write about this because few people are familiar with this disease and maybe just telling those I know, raising a tiny amount of awareness, will mean something in the end. If all else fails maybe it will just help to remind people how fragile life really is.
A few months ago my mother was diagnosed with ALS, also known as Lou Gehrigs disease.
Amyotrophic lateral sclerosis is a disorder of the the motor neurons, or nerve cells in the brain and spinal cord that control the action of voluntary muscles. Any muscle that you have to think, or send a signal from your brain, to control is affected. For example your legs, arms, and lungs. For unknown reasons, in ALS these motor neurons die, and the muscles they control no longer function, and gradually become paralyzed. For the most part, ALS doesn't affect automatic body systems like the heart, digestion, temperature, etc. The senses, touch, hearing, vision, and smell, are largely unaffected. Intellect and mental cognition usually aren't affected as well.
Each case of ALS is unique. ALS has no predictable pattern.
There is no known cause or cure.
Some people have a slow progression of symptoms, while others experience a rapid loss of ability. Sometimes there's a big loss followed by a plateau. Since her diagnoses in September my mother has progressed at a rate more rapid then we could have ever thought, and now we are praying every day for the plateau.
As a caregiver and most importantly as a daughter of a beautiful woman fighting everyday against ALS, my life is not easy and I definitely never pictured myself in this situation. But I am so very grateful that I was at a place in my life where I could drop everything, and be here, in this life. Also, I am extremely grateful for the endless love, support and generosity of friends, family and strangers.
Life is hard, but life is beautiful.
Thank you my dear. You don't know me, but I held you as a baby when I lived in Ventura and Oxnard. Your mom, Renee and I use to dance to b52's and lay out at the jetty. I got married, had three kids and moved to Austin. FB reconnected Loni and I and I am so sorry to hear about her diagnosis. I am familiar with ALS and praying for her daily. You have blossomed into a beautiful young woman , artist and writer. I will look forward to your blog as I have missed your moms posts. Keep the faith , Debbi Kruse
ReplyDeleteThank you so much for all the information. I went to high school with your mom and aunt and had a lot of fun working at Chuck E Cheese with your vibrant beautiful mother. Im praying the Lords BEST over her and all of you that she adores!
ReplyDeleteI was friends with your aunt Jane, but knew your mom well and the entire family. Diseases can be very cruel, lots of asking why?? I was diagnosed with melanoma 3 yrs ago and was told back then I had 6 months to live. When he dr told me that I laughed in his face, then i got mad and finally I decided that I was refusing to accept that as my Ruth. It's been and still is a very tough battle. Through this time i found the lord and have accepted him into my life. I've lost friends because of my diagnosis but I have gained more friendships than I could ever ask for. Your mom is blessed. You sound like an amazing young lady....if ever I can help if even just to have someone to talk to who can relate, please contact me.
ReplyDeleteDenise Dean
You seem to have grown up to be as beautiful and caring as your mother is. I pray for you all each and every day. Love you all.
ReplyDeleteYes care taking is an adventure and an amazing blessing. I went to Jr High and High school with your Mom and Jane, both wonderful women. And it looks like you have grown up to join the crew. I am happy that you have a creative outlet, a naturally giving spirit, and the ability to help. There is really nothing I can say to ease your true heart except to let you know you are supported in prayer, goodwill, and with resources who really do care. Tuesdays with Morrie is one of my favorite books, he gave life to ALS and how to make light of it all. Morrie looked it straight in the eye and laughed at it. I can see him smiling at how you are dealing; together as a family. WOW! Kudos, I am a resource with access to people and places:) We have a great holistic healing center here in Dallas, also great options out of the country, vitamin therapy, natural solutions since body weight and toxicity is a consideration.. Call me anytime Yvonne 214.789.2641 Blessings....Veria TV is awesome http://en.wikipedia.org/wiki/Veria_Natural_Wellness
ReplyDeleteThe Incurables has had amazing true testimony regarding MS, Parkinsons and ALS....Check it out. If you need me to research anything just ask:)
"As a caregiver and most importantly as a daughter of a beautiful woman fighting everyday against ALS, my life is not easy and I definitely never pictured myself in this situation. But I am so very grateful that I was at a place in my life where I could drop everything, and be here, in this life. Also, I am extremely grateful for the endless love, support and generosity of friends, family and strangers.
ReplyDeleteLife is hard, but life is beautiful."
What strength you have Breezy! You are an inspiration to me as you care for, love, and support your mother. Know that I am here in whatever way you need me. You and your family are in my thoughts as you face this battle. I love you!
(Love, Flip, aka Ella)