My Symphony

The Lord your God is among you, a warrior who saves. 

He will rejoice over you with gladness. He will be quiet

in His love. He will delight in you with singing

~Zephaniah 3:17~

Before I say anything at all about what is going on in my life, I'd like to dedicate this entry to the memory and honor of my friend, Gary Frank Kitchens who joined the hosts of Heaven this past week and whose life we spent celebrating this afternoon. Oh, that we could all be the salt and the light to an ugly, dark and needy world as Gary and his beautiful wife, Sharon, have been! Please keep Sharon and the entire family in your prayers as they draw strength from the God they know, love and serve.

I always say that I am going to update my blog more often and be more proactive in voicing the things God is teaching me through this journey with chronic illness, and then I look, and alas...it has been four whole months since my last entry! I lament over this, but only briefly, because to do so just makes me feel worse--about myself, my situation, my failures. So I will charge onward and try my best to get as much said with as few words as I am able to pen...that is, if that is even within the realm of possibility...ha! After all, I know I can be wordy. To my chagrin, this blog is so unlike the many I see that are short, sweet and to the point. I just can't seem to get there, so please allow me to apologize in advance. I have so much to share about what God is doing in my life that I scarcely know where to begin. Oh, that HE would give me the words to show HIS light, HIS love, HIS glory reflected in me!  

The last four months have been full of victories and difficulties, but as I ask the question...much like Lauren Daigle in her song, 'You Say'..."Am I more than just the sum of every high and every low?", I find through scripture and the Holy Spirit within me that the answer is a resounding YES! I am so much more, because I am a masterpiece of God; my significance lies squarely on what GOD thinks and says of me! Not only that, like a perfect symphony, He orchestrates my every step, places my feet on firm ground, leads me through my dance of faith. All I have to do is follow the Maestro, stand on my Father's feet as we dance together, and allow HIM to direct my path.

I recently attended my high school class reunion, something I determined to do, despite the tremendous physical and emotional strain activities such as this place on me. Not only did I want to go, I felt compelled to go. Oh how I needed the fellowship, camaraderie and reconnection with lifelong friends--some of whom I have not seen in well over twenty or thirty years! One friend in particular walked in, and as we embraced, it was as if we had never lost touch. In fact, upon later comparing our senior class picture with the reunion group picture, I noticed that very little has changed at all. There we are in both pictures together--side by side--with her on my right and I on her left. Though we have both seen our share of pain and heartache, the years melted away and we felt like school girls again.

Little did I know that God would use her in a profound way over the next few weeks, to comfort, prepare, and bring peace to my heart. She is a "hand-written note" kind of a person, and I love that about her, especially in this age when everyone uses technology to communicate, but no one seems to really connect with anyone on a truly personal level. But my friend and I connect, and it was with great joy that I recognized her characteristic handwriting on a note, then again when a package arrived a few days later. Within that package came a source of comfort and peace that I didn't even know I needed at the time--but God knew. I hastily opened the enclosed CD (music by Hillary Scott and the Scott Family) and began to play the music. As I listened, God spoke to my heart through two songs in particular. The first is called 'Still', and assurance came that God is working continuously by parting waters to make a way for me, moving mountains that I can't see and answering my prayer before I even speak! All He needs for me to be...is...still. The second song I knew carried a message for me was 'Thy Will be Done', which says that no matter what happens in my life, whether storms or trials or whatever--my prayer should always be like that of a child, pure and centered on those four words: "Thy Will be Done"! I know God sees, He hears, and He answers. All I have to do is rest, knowing that He is GOD. And I. am. NOT. 

So with my spirit stirred, but not quite knowing why, I reflected on a "chance" encounter I had earlier in the month. We attended a Myasthenia Gravis Support Group meeting in Fort Worth a couple of weeks earlier, and I "happened" to be seated across the table from a lovely woman who had major surgery called a thymectomy in an endeavor to put her Myasthenia Gravis in remission. It was difficult to hear her in the restaurant meeting room...where people were chatting, plates and silverware clinking...and we never really had the opportunity to finish our conversation. In fact, we failed to even exchange phone numbers. I did, however, get one name--and it was a nickname. Now, as I thought about the past few weeks, I wondered--what's God up to? Why is He making it crystal clear that He's preparing me for something with His provision of love, encouragement, support and--of course-- the "thing", other than scripture, that speaks the most to me: music?

The answer came just a few days later as I visited my doctor in Houston. She spent an hour and a half with me, going over test results, making a game plan, even discussing thymectomy. During our visit, the words "Paraneoplastic Myasthenia Gravis" became front and center, and while I won't bore you with technicalities, it simply means that there is a tumor somewhere--perhaps small and hidden, possibly even occult--that is causing the body to fight against it. But in the process of fighting that tumor, an autoimmune response is launched, which causes or worsens diseases such as Myasthenia Gravis and others. So the tumor must be located and treated, all the while treating the autoimmune disease itself. I was shell-shocked. Cancer? Me? What more, Lord? As I tried to wrap my brain around it all, the words to the music my friend sent me kept playing over and over in my mind..."You're parting waters, making a way for me; You're moving mountains that I don't even see! You've answered my prayer before I even speak. All You need for me to be...is...still." I could therefore sing along as I hummed the other tune and my heart cried, "I know You see me, I know You hear me, Lord. Your plans are for me, goodness You have in store! So Thy will be done, Thy will be done, Thy will be done!" Suddenly, for the first time in a very long time, I felt hope that my disease process (which has been aggressive and progressive) would slow down and that I will actually be able to do more than just look at a dance floor...I may even be able to dance again!

Remember the lady from whom I sat across during the MG Support Group meeting? Since my doctor and I had discussed thymectomy and this dear lady lives in my area and would be able to answer questions and even refer me to her surgeon, I looked for her name within an email I received by the leader of our support group. I was worried that I wouldn't be able to find her real name, but I picked one from the group and sent an email. To my delight, I chose the correct address, we exchanged phone numbers, and I gathered valuable information from her via telephone. 

I called her thoracic surgeon, who operates out of UT Southwestern in Dallas, got an appointment right away, and went to see him, naively expecting to go into the hospital and have surgery ASAP. Well, to my great disappointment, things don't quite work that way. The surgeon told me that after reviewing all my records, consulting with my neurologist and assessing my condition, he would NOT be doing surgery. Though we need to get to the root of where and what type the tumor is, he doesn't believe it lies in the thymus gland because it didn't show up on CT scan. He also voiced concern that I am so sick right now that surgery would be too dangerous and that I am at high risk of not surviving at all. If I did, there's no guarantee that a thymectomy would even help. I am sure I looked deflated (I sure felt deflated) because he looked me right in the eye, told me in no uncertain terms that "God has a plan for you!", and then spent the next two hours with me, doing research for me, trying to connect me with specialists all over the country, assuring me that he wanted to step outside his scope of expertise to help me get better. He encouraged me by telling me that God has allowed this to happen because I am tenacious and have enough fortitude to keep pressing on, that I am smart enough to use the information we gather to educate and advocate, helping others in the same situation I am in. He even encouraged me to blog about my experiences!

Since I have what he calls a "constellation" of autoimmune conditions as well as a genetic connective tissue disease (the latter probably contributing to the former), he wants me to work with him to continue to seek out answers, as my condition is rare. There are no easy answers, no treatments outside what we're currently doing until we find the cancer location, so for now, it is going to be a road paved with searching, researching, networking with this new amazing doctor, and praying for guidance. I have no doubt that, just like a symphony, God orchestrated every move toward this direction which ultimately led straight to this doctor, who believes that I can find answers that will help me, my children and others as long as I continue to persevere and not give up.

In the meantime, I have an appointment next week with a paraneoplastic specialist that the surgeon referred me to, and I trust God with it all. After all, God's word is full of promises, and He is faithful to keep them all.

God bless you, I love you...

~"But I trust in You, Lord; I say, 'You are my God'. My times are in Your hands..." 

(Psalm 21:14-15a)~

Hidden Treasures

"I will give you hidden treasures, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name." ~Isaiah 45:3~

Today I am not going to focus on illness because, honestly, it gets so tiresome to have to go through so much and then to talk about it causes me to grow even more weary. Besides, I am not my disease. I have other interests in my life and while awareness is extremely important, sometimes you have to take a break from the burden of it all and talk about something else. So today I want to share an experience with you that I had this morning that was profoundly moving to me.

I. love. jewelry. There it is...it's out there. But truth be told, don't most women? I even have three holes in each ear just so I can wear lovely earrings to make my diminutive ears and non-existent earlobes look like they are actually there! I also take care of the jewelry that I have, with some pieces dating back 45 - 50 years. As my 63rd birthday approaches in a couple of weeks (shhhh...don't tell anyone I'm that old!), I am reminded of the lovely little earrings my parents gave me for my 18th birthday. I have no idea whether or not they are valuable...they are just simple, gold studs set with little green stones...but they definitely are a treasure to me because my parents gave them to me. And I have been wearing them, carrying them with me on every move and every trip I have ever made, off and on for 45 years. I put in studs and leave them in my ears, even when going to bed; and I had done that when I arose yesterday to get ready for my weekly IVIG treatment for Myasthenia Gravis, Lupus and Common Variable Immune Deficiency. I didn't feel well from the get-go, but I took a shower and washed my hair anyway. I never even thought about taking the studs out of my ears because, frankly, I have been wearing them so long, I don't notice they are even there...they are like a part of my anatomy!

Well, my hair is long and I wrapped it in a towel to get the excess water out, then proceeded to dry my hair as much as my weakened muscles would permit. I finally gave up on that project and decided to just let my hair dry naturally. *I know this is getting long, but please keep reading...I have a point to all this rambling, I promise!!

Just before the nurse arrived, I saw the back of an earring on the floor mat in the bathroom. My hands quickly reached up to my ears, and to my dismay, I discovered that one of my studs was missing...yes, one of the treasured studs my parents gave me so long ago! I asked Gary to help me look for it, but we ran out of time upon the nurse's arrival, and with the day's treatment and resulting ill effects from it, my poor little green stud was temporarily forgotten.

But you know how the Bible says that God gives us mercies afresh and anew every morning? It's true, and I awakened this morning at about 4:00 a.m. and couldn't sleep. The best thing for me in that situation is to spend time in prayer, get out my Bible and begin to read, asking God to show me a truth that I need for that day. As I was reading scripture, God clearly reminded me of His power and love. In Daniel 20:22, the Bible says this about God:

"It is He who reveals the profound and hidden things; He knows what is in the darkness and the light dwells in Him." [italics mine]

While that is a scripture I am familiar with, it suddenly became "Remah" to me...a direct, spoken message  to me, coming alive in my heart...and though I wasn't quite sure what God was going to reveal, I knew that this particular message from scripture was spoken to me.

A little while ago, I went to grab the dark brown floor mats and toilet lid cover to throw in the washing machine, and as I was about to remove the lid cover, something caught the light and shimmered in the dark fabric of the lid cover. As I ran my hand across it, I found my precious stud! God knew that even this tiny stud...inconsequential, really, in the whole scheme of the vastness of all things entrusted to His care...was important to me! And He loves me enough to reveal what was hidden in the darkness. It was something I had searched for, but could not find. I don't know about you, but I find that amazing.

I have learned that just when I am feeling small...invisible and invalidated, especially with all things medically related...and begin to worry about all the big stuff happening in my life, God reaches down and whispers, "I'm here, my daughter, I love you." He reminds me through His Word that He hears our cries and answers prayers. When our feet are sinking in miry clay and we feel like we are being sucked under by the weight of it all, He draws us up, sets our feet on solid ground and puts a new song in our mouths (Psalm 40:1). He gives me breath when I have thought I had no more, and walks with me in the darkness until He completes His purpose in me. And I will trust Him to do just that, even when things don't seem to be going my way. As the Martina McBride song says,

"God is great, but sometimes life ain't good. And when I pray, it doesn't always turn out like I think it should--but I do it anyway!"

Because you know what? We are more important than anything to God...we were created in His very image, to have fellowship and communion with Him.

So I will hang on to His promises, which are all true, and I will thank Him for the 63 years He has given me to know Him and to love Him. And on that note, I leave you with this thought:

I am determined to be invincible 'til He has finished His purpose in me! And nothing shall shake me, for He'll never forsake me! I am determined to live for the King!            ~"I am Determined" by Tim Shepherd~

God bless you, I love you...
Kathie Lea

 

Updates and Milestones...Concern and Celebration

The past month has been a busy one for me, with visits to several doctors multiple times. It has been exhausting and perplexing, painful and difficult. But it has also been a time of reflection and peace in the midst of chaos because through it all, I recognize how truly blessed I am. I had some diagnoses added to my list, one or two of no real consequence other than pain, added medication and inconvenience, and one that I must do something about soon. I finally got my reports from the testing done by the Pulmonologist, and I have combination/mixed Obstructive and Restrictive Lung Disease. I am praying that I am approved for a BiPAP machine which will help with my labored breathing and decreased oxygen saturation. I already fulfill the criteria required for insurance coverage, but am still scheduled for a titration sleep study on August 2nd. What I am praying for is a BiPAP machine that will not have a fixed setting, but allow me the freedom to set it for what I need as I need it...whether asleep or awake...so that I can avoid ER trips and intubations. Too many Myasthenia Gravis patients die due to respiratory failure from weak chest wall muscles and/or diaphragm failure because they don't get proper ventilation in time. Having a BiPAP will provide me with noninvasive ventilation when signs of impending crisis are evident before the actual crisis occurs. This will be a HUGE aid in my fight against MG, a vital addition to my arsenal of tools going forward.

I reached a milestone this week, one that I wasn't sure I would attain when I first started this journey. There is much unknown about Myasthenia Gravis, but one thing that is proving helpful to me considering my treatment limitations is IV Immunoglobulin (IVIG) therapy. I posted an update on Facebook the other day, but for those of you who support, pray for, and encourage me day after day, week after week, who do not have Facebook accounts, I am writing this for you...

"200". Three little numbers (two of which are zeros, generally referred to as "nil" and often viewed as nothing but place holders) that, when put together, have great meaning...especially to people like me. "Really?", you ask..."It looks like an inconsequential number to me. What significance could that number possibly hold?" Good question! Let me help you understand what the number "200" represents for me:

• Two years of driving over 600 miles round trip to an infusion clinic in Houston a minimum of every two weeks
• 3 1/2 years of weekly nursing care in my home 
• 8-10 amazing nurses
• Multiple needle sticks, collapsed veins and surgical placement of a port in my chest
• Three different home health care companies
• SIX different brands of IV Immunoglobulins (IVIG)
• One good pharmacy and one specialty pharmacy that exemplifies excellence
• A Patient Advocate that works tirelessly to help patients like me receive treatment they need
• Roughly $1.5 million in costs for these treatments alone
• Hundreds of thousands of DONORS who gave the gift of life through their plasma donations

Most of all, "200" represents LIFE...another year, another week, another day...to love my husband, my family, my friends; to worship my God--Jehovah Jireh (God, Who provides), Jehovah Rapha (God, Who heals). Yes, it is true. This past Tuesday, July 17, 2018, I reached another milestone in my IVIG therapy. Tuesday was my 200th treatment. I am still here, and I am blessed. To be sure, "200" is looking pretty awesome to me!

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through Whom we have gained access by faith into this grace in which we now stand. And we boast in the HOPE of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." ~Romans 5:1-4~

Thank you once again for your loving support. It means more to me than I can express.
God bless you, I love you...
Kathie Lea

 

 

Myasthenia Gravis Has a Face, And it Just Might Look Familiar

As we close out Myasthenia Gravis Awareness Month, I find myself regretting my failure to really promote education about this difficult disease. But the truth is that it is because I have this condition that my physical strength is gone and I find very little reserve with which to work on things like writing blog entries and creating photo collages, memes, and informative Facebook posts that tell my story. You see, Myasthenia Gravis is no respecter of persons in that it randomly strikes at will, regardless of age, gender or race. In my mind, it is a beast which seemingly has a life and personality, with a desire to destroy any and all in its path. In spite of the nature of this illness, with its ultimate destruction at the nerve junction that prevents the message relay from the brain to the muscle which results in devastating and debilitating muscle weakness, it still affects each individual uniquely. It is why we are known in the MG community as snowflakes...no two of us are alike. While it is considered rare, the fight for a cure and research is ongoing, so there is HOPE on the horizon. But as my experience over the past few weeks reveals, there is still not enough knowledge, even among medical professionals.

Over the past month, I have seen just about every "ologist" there is--each referring me to another because whatever is going on is out of the realm of their specialty/expertise. From Rheumatology to Pulmonology, Endocrinology, Radiology, Hematology, Nephrology and Gastroenterology to a Sleep Clinic--I have seen them all. And almost without exception, I am confronted with faces devoid of expression or perhaps even the proverbial "deer in the headlights" look that comes with lack of knowledge about Myasthenia Gravis the moment the words pass my lips. And every single doctor has asked me why I see a neurologist in Houston. Well, when you find the best, you don't change anything. You travel over 300 miles anytime you need her unexpectedly, and for your frequent appointments because--frankly--she "gets it". She knows her stuff. She's not forgotten why she has chosen a lifetime of caring for her patients, nor her oath to "first do no harm". For years, she has been the only doctor to actually perform a physical and neurological assessment at every single office visit. Nope, I will never leave her because, simply put, she's nothing short of amazing. And in the almost 6 years since I have been seeing her, she has never once disappointed me in the quality of her care.

Thankfully, I am slowly but surely finding healthcare providers in my area who are doing more than just typing information into a computer. The 4 new doctors I have seen in the past two weeks have not even had their computers with them...they looked me in the eyes, talked with me, even examined me. I was so amazed that I thanked each and every one of them for caring enough to actually pay attention. I do think that sometimes we forget that as overwhelmed as we are with our conditions, the physicians that oversee our care are just as overwhelmed and just as tired. They are overworked and buried under a load of paperwork and federal regulations that require time away from the reasons they got into medicine in the first place. On the other hand, the lack of knowledge and awareness of diseases like Myasthenia Gravis is staggering. So it is left to us...the patients...to rally the strength to advocate for ourselves and educate others.

The bottom line is this: Myasthenia Gravis is a reality with which roughly 20 in 100,000 people in America struggle, making it a rare disorder. Consider what that means...perhaps not much to the 99,980 people for whom there is freedom from pain, weakness, a fight for each and every breath. But for those of us bowled over by the ravages of this disease, it means a lot. It means multiple doctors, nurses, home health care, monthly or weekly IV or plasmapheresis treatments, daily medications, machines to help us breathe, ports surgically implanted in our bodies, ventilators, wheelchairs, walkers, multiple hospitalizations, catastrophic medical expenses, and worry. Most of all, Myasthenia Gravis has a face. And more than likely, it could be the face of someone you know and love.

For more information, please visit www.myasthenia.org.

God bless you, I love you...
Kathie Lea

"The Lord will command His lovingkindness in the daytime; and His song will be with me in the night, a prayer to the God of my life." ~Psalms 42: 8~

Looking for My 'Normal', Finding Something Better

"Ah Lord God! behold, thou has made the heaven and the earth by thy great power and stretched out arm, and there is nothing too hard for thee..." ~Jeremiah 32: 17~

This has been one of the most difficult couple of weeks I've had in a long time. Like a boat washed aground by stormy seas, illnesses resulting in a couple of family members' hospitalizations, my own health concerns, and visits to specialists have filled my time, my thoughts, and have wreaked havoc with my emotions. Add to that the concern over a shortage in supply of my life-sustaining IV Immunoglobulins (IVIG), and we have a potential recipe for a total emotional meltdown. And believe me, that is not a pretty thing; I just want to cry, shouting, "Hey...my 'normal' has been stolen, right out from under me!" And maybe even stomp my foot for added effect! Because stress impacts me negatively health-wise, I have felt absolutely awful pretty much 24/7 for more than two full weeks. 

I saw a new rheumatologist and my neurologist three weeks ago, and at the insistence of my neurologist, must add a new specialist to my ever growing list of doctors--a pulmonologist. While I am not looking forward to more tests, I find some comfort in the idea that I will finally get some things taken care of and, hopefully, under control. So much about my journey is baffling to me; to be perfectly honest, I find myself wanting to just push things aside so I don't have to cope with any of it anymore. But I know a young mother who has a daughter with multiple health conditions, and she faces the unknown on a daily basis. Every time I have a new symptom or no one seems to know what to do to make my situation better, I think of her. Her daughter was accepted into and is participating in a program in Houston where doctors search for answers to health issues for which there is no cure...not even a name, for that matter. I think of her and pray for her often, realizing that each and every known disease was once an unknown. Someone suffered unusual symptoms, and dedicated doctors worked tirelessly to find answers in an effort to help their patients. When I experience an unusual symptom, question one or more of my many specialists about it, and they shrug their shoulders with no answer, I consider that sweet child whose parents are doing everything they can to find answers--even though the answers they seek may not come quickly. Somehow that brings me a bit of peace and I don't doubt the healthcare system (for the most part) or my own sanity quite so much. Why? Because I know that answers will come!

Since my family has been going through a bit of a crisis, I contacted the pastor of a church nearby that we have visited a couple of times, and asked for prayer. I have to admit that it is very difficult for me to ask for help for myself beyond the realm of prayer, which comes easy for me because prayer is such an integral part of my life. But to ask for physical help? That is much harder for me!  So you can imagine my discomfort when his immediate response was to assure me that not only would the church pray, but that they would put ACTION to their prayers...and then he asked me what physical needs they could work to meet. The thing is, the Bible says very clearly that we are to bear one another's burdens and help one another when one of us is in need. And it's a two way street; so that means that I'm supposed to let someone know what my needs are when they specifically ask me. Keeping that in mind, I swallowed my pride and told the pastor just what our needs are. I have to tell you that since that first request for prayer, sweet members of that church have visited me, brought food on my worst day of the week (infusion day), have cleaned my house, sent a card and messages of encouragement, and are signing up to take turns to help out and provide anything we need. At a time in my life when I have felt alone and isolated, this blessing has covered my soul with a healing balm that is renewing my spirit and giving me strength to face whatever the difficult days ahead bring my way.

Please keep me and my family in your prayers. I know, because the Bible tells me, that there is not a word on my tongue without God knowing it already. (Psalm 139:4) He teaches me to trust Him with all my heart (Proverbs 3:5-6), and promises that as I seek His face, I will find Him if I search with all my heart. (Jeremiah 29:13). Thank you for your support, your encouragement, and your grace. I'm not going to waste time looking for my 'normal' anymore. I've found something much better, especially in times of crisis...the peace that comes with the promises of God, and the beauty in the hands of those who serve Him.



God bless you, I love you....
Kathie Lea

Wendy, Wonderstruck and Living Loved

“Be joyful in hope, patient in affliction, faithful in prayer.”

~Romans 12:12~

I had a friend once…someone I had never met in person, but to whom I owe a debt of gratitude I can never repay. Her name was Wendy, and because she was unable to get the proper care she needed for her medical conditions (of which there were many, including Myasthenia Gravis), she passed away last year in February. I’ve been thinking about her a lot lately. She was a member of my online Myasthenia Gravis support group, and she was always available to answer questions, no matter how many times someone asked. I have written about her before, but I wanted to honor her again today because she is the example I hold close to my heart as to how a chronically ill “warrior” should be…helpful, honest, compassionate, a keeper of the keys to a wealth of information, with a generous heart to share it all if it would bring awareness and aid, without a morsel of impatience. Wendy made a difference in countless people’s lives, and this entry is dedicated to her because, frankly, I want to be someone’s ‘Wendy’. In spite of weakness and pain, despite being homebound and unable to get out, I want to encourage, to uplift, to advocate and educate. I want to make a difference. Every time I write in this blog, I pray that the words I put forth are words that are meaningful and helpful…and hopefully, coherent! ;-)

I don’t really have any special updates about my conditions (though I have seen multiple doctors over the past few weeks), but I do have a couple of things I’d like to share about how God is moving in my life. I have shared before about how lonely it gets when a person is homebound, constantly fighting chronic illness and never knowing when things will unexpectedly turn south. Sometimes, the days meld together and none of them seems good. Add to that the fact that my husband has been working away from home, and…well…I’m sure you can imagine how difficult and lonely the days can be. 

"Wonderstruck"

Photo Credit: Garlan Blundell

A couple of months ago, some friends of mine devoted their time and efforts to bringing a ladies’ retreat and Bible study to me. One afternoon, while reminiscing of days long past when I was able to participate in ladies’ ministries, I made a simple comment to one of my friends that I would love to go on a retreat. She spoke with a couple of others, and these precious friends put the wheels in motion (literally); before I knew it, they had come to me…and I’m not talking about coming from down the street; I mean from one part of the state to another! I cannot express how deeply this kind and loving gesture touched me. I was truly humbled and blessed. The name of the study was “Wonderstruck” by Margaret Feinberg, and that is exactly how I felt…wonderstruck, astounded at the absolute assurance of God’s power and love, amazed that these women would reach out to me in such a way. In spite of weakness and fatigue…even a subsequent setback in my health status…the joy I felt during the entire experience was like a spring bubbling up its life-giving water within a tormented heart that had spent day after day as dry and lonely as miles and miles of desert sands. I continue to be wonderstruck on a daily basis as I see God’s handiwork alive in me. 

My neighbor told my husband recently that she understands that I have many bad days, but she wanted to actively pursue getting together with me as I felt up to it. Ah, yet another “wonderstruck” moment in my life, and a specific answer to prayer for companionship, friendship, and Christian fellowship. She came over one morning, and before we knew it, 2 hours had passed and I knew we would be good…no, great…friends. We talked about all kinds of things…even touched on loneliness and isolation; I had the opportunity to share my experiences with chronic illness with her, and how God has worked in my life through it all. She asked if I would be interested in joining a Bible study if she and her friend could put it together. In fact, she asked if it would it be easier for me to have them come to me and have the study in my home! Once again, amazement filled my very soul, and I said yes! Within minutes, she had contacted her friend who would actually lead the study, dropped off the book, and we planned for our 6 week study to begin that very next Friday. When I started to read the first chapters of the book entitled “Uninvited” by Lysa Terkeurst, I began to weep. It was exactly what I needed that day, what I need today, and I feel certain will be exactly what I need over the next 6 weeks. 

"So we can say with confidence,

'The Lord is my helper, so 

I will have no fear...'

Through these studies and by delving into the very Word of God, I am rediscovering how valuable I am to Him. I am not cast aside as a worthless, broken shard; I am complete in Him…a vessel He can mold and shape into something beautiful and useful for His purpose. I have felt rejected by people many times, as have most of us. But do you know what? I am discovering that you and I can make a choice. Just as HOPE is a choice, we can choose to recognize that we are LOVED! No illness, no circumstance, no mistake or wrong turn can change the fact that God loves us and has from the foundation of the world. 

God bless you, I love you…

Kathie Lea

“Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.” ~Colossians 3:16~

Honoring Parents -- What I Have Learned

Dear family and friends,

Today I read a beautifully written, well-thought-out blog post entitled “What I’ll Say to My Children if I’m Diagnosed with Alzheimer’s” . Perhaps it is because I am recovering from a particularly bad infection and am, frankly, a bit emotional since I am physically and mentally drained. But as I read, I made a purposeful decision to write this open letter – not just to my children – but to anyone who is experiencing a downward shift in the mental or physical health of one or both of their parents, with the hope that it will help during the most difficult days you face ahead. I have written often about the multiple conditions that already make activities of daily life terribly difficult for me, and I have a somewhat increased risk of developing Alzheimer’s due to a mutation in the APOE gene. So it is important to me that my children and loved ones know that they have permission to do what is necessary and best for me (and them) regarding skilled nursing care should the need arise…and they may do so without feeling any guilt or inadequacy.

Photo Credit: Keith Varnado

I know first-hand how Alzheimer’s Disease ravages the mind because my father had it; I learned much about this terrible disorder as I watched my daddy retreat into the shadows of fear, dismay, confusion, bewilderment and disorientation as his disease progressed. When the time came to choose a facility for him because he needed ‘round the clock medical care, my mom and I visited multiple nursing homes. We left almost all of them, our hearts broken and tears streaming down our faces, because the conditions were deplorable. How could we possibly leave my beloved daddy in such a place? Not one of them was acceptable. But we persevered, having armed ourselves with prayer, knowing that God cared about our needs and heard our cries. We finally found a lovely, brand new facility, right across the highway from my home; we were at peace that we had, in fact, found the best place for Daddy’s care.

It was a tremendous relief to be able to spend time with him daily, and it was because I interacted with him consistently that I finally (sort of) adjusted to the role of “parent-daughter” rather than just “daughter”. I took an active role in making sure his clothes were laundered, that he ate correctly, and I attended the Plan of Care meetings as much as possible. My sweet husband, Gary, took on the task of keeping Daddy’s beard trimmed, and Daddy would relax so completely that he would fall asleep every time. 

The memories forged during the last 6 months of my daddy’s life are dear to me…cherished treasures for which I am eternally grateful. And it is because of those precious moments that I gleaned some nuggets of truth that I am prayerfully passing on to you:

• Love, honor and respect your parents, especially as they age and their health – both mental and physical – declines
• Please don’t argue, regardless of whether or not what they say is factual or even makes sense; their perception is their reality, after all
• Visit often. Daddy used to wait for me in the lobby of the nursing home; he might be confused, even disoriented, but somehow he knew to expect me every single day. More often than not, he had concerns that he couldn’t wait to share with me…bewilderment and fears based on his reality. All I had to do was listen and hold his hand; it was amazing what a calming effect that had, easing the burden of his distress
• If your parent makes a reasonable request, be sure to oblige. I remember one evening when there was a band playing country music for the residents, and Daddy was so excited that Gary and I were there to hear them. It was a night when he was unexpectedly clear of mind. I had never known my father to dance…I didn’t know he liked it at all, although I knew he loved music. He remembered, though, that Gary and I loved to dance, and had recently even owned our own dance studio. So when the music began to play, he asked us to get out on the floor and dance. We didn’t have the “proper” shoes, so we told him “no, we’ll do it another time”. But there never was another time, and he died shortly thereafter. It is one of my greatest regrets because it didn’t matter that we didn’t have our dance shoes on…all he wanted was to see us dance. Though he tried to hide it well, I still remember the flash of disappointment in his eyes and it makes me sad to this day.
• Pray for your parents, then put action to your prayers. If they enjoy music, bring CD’s and a player so they can listen to their favorite artists. Make a photo album and go through the pages together often. Surround them with pictures of family and encourage your little ones to make artwork for them to enjoy. Bring them their favorite foods or treats. Most of all…LOVE them. 

Photo Credit: Keith Varnado

“Honor your father and your mother, so that you may live long in the land the Lord your God is giving you.” ~Exodus 20:12~

God bless you, I love you…

Kathie Lea