(The photo credit goes to my sunny and sassy friend Claire Cummings. Her timing (or His timing) was perfect. Thank you.)
This has been a full month. My sweet Mama Ina Mae has had two hospitalizations since April 28th related to infection. She is finally on the road to recovery.
For those who do not know, she has Huntington's Disease. It is a not a nice disease, as it has the qualities of Alzheimer's, ALS (Lou Gehrig's Disease) and Parkinson's all combined in one life changing package. Mama is the 2nd of her siblings to be diagnosed. She was blessed with late onset, but it isn't an easy path to walk. Nothing about it is easy... but she warms our hearts with her grace and genuine joy as she faces every day with a smile and an "it's alright" or "I'm alright".
I won't dwell on this often, as it gives the disease too much power. She awes all of us with the way she faces disease but she is not defeated!
This is Huntington's as defined on the HDSA website:
"Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease."
When I say it is a nasty little disease, I do not joke or say it lightly. They are making great advances through science and feel a cure or more effective treatments are very close, but we are not there yet. Hope rises. I think it floats.
Beyond the uncontrollable jerking movements, many who suffer from HD become mean and aggressive. They can be very difficult to care for not just medically, but emotionally. In fact, at Northwestern, where Mama is treated, her physician is working on a study to help the many HD people who become irritable, angry, or even aggressive. Mama is not enrolled in that study.
It seems that the Holy Spirit has, to this point... protected her spirit. Her joyful spirit has not waned. She humbles me with her resilience and ability to rise above the circumstances. She never complains.
Her Care Teams at both hospitalizations commented on her attitude and sweetness. The Northwestern resident from neurology asked her if she knew "where she was", while standing by her bedside. She told him "The Huntington's Hospital" and then surprised both of us when she said, "On the 14th floor." I said, "Mama, how did you know that?" She pointed to the room number that was listed on her patient care whiteboard. "The room number is written right there." Well, the physician laughed out loud and said, "I think I'm done with that assessment."
Then, two weeks ago, she was at St. Mary's in Kankakee for another infection. The staff seemed to wonder at her attitude and repeatedly told us how much they enjoyed her sweetness. Each caregiver seemed to find their opportunity to tell us that "some Huntington's patients are irritable and even mean". We know it is part of the disease for many.
We tried to explain that Mama has Jesus and for now, he has protected her spirit. And, she isn't afraid of her diagnosis. In fact, she was asked, "Do you fear HD will shorten your life?" Her reply... and I can directly quote her reply..."Oh, heavens, NO!"
She completely trusts that her Heavenly Father is the author of life and delivers us from this disease ridden, painful, sometimes evil and always troubled world when he calls us home. What should she fear? The Lindgren motto was: "Be paid up, prayed up and ready to go up."
Do not be afraid of those who kill the body but cannot kill the soul.-Matthew 10:28
For to me to live is Christ, and to die is gain. -Philippians 1:21
She has no fear. She is a quiet, gentle warrior. I have to share what the doctor wrote on her discharge:
"Patient is in good spirits, today. She is laying in the bed, just hanging out. She was alert and oriented. When I walked in the room, she acknowledged me and we had a discussion about her care. She is very excited that we are discharging her home. I did share how inspirational she is that she has such an amazing attitude in life with a devastating diagnosis of Huntington's chorea, and she has inspired me to approach my life better." - St. Mary's Hospitalist
I have never seen such a personal note in a discharge. What a special doctor! I am overwhelmed and overjoyed that he wrote this down.
This disease is hard. The staff have seen it at the hospital. Mama was different. We sang "Are you washed, in the blood" when she pulled out her IV (accidently with Huntington's jerking ) for the third time in one day and ended up in a blood bath. You have to sing or cry. Mama and I sang! She was such a good patient. (A special shout out to the nurses and aides who gently loved on her every time they fought to find a new place to put an IV.)
I have waited to write this... sorry for the long post... but I wanted to tell it well. Claire provided the perfect picture. It all came together. Mama has been salt and light since she found real joy at the foot of the cross. Who knew she would have a new avenue to sing of His love, His mercy and His grace through her disease.
I love this passage... on the picture I choose "The Message" version.
“You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven. -Matthew 5:14-16 (ESV)
She teaches us so much as she walks in grace and light. She is salt and sassy. On the days it is hardest to see her sufferings, she smiles at us and says "I'm alright." or "It's alright". Her light shines bright. She has a supernatural, eternal source... and she is plugged in!
Today, I am grateful for my "city on a hill".
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