Why: Things I Want Your Heart To Know

Now, 10 years later, I am surprised to be alive. Not only that, but I am thriving. I have three children. All of them are in their 20’s and though I have had a tracheostomy, and I can’t move anything except my head, they have settled into “this is our life now.” They know what I can and can’t do, and we live our lives accordingly.

So, why do I call my site “Things I Want Your Heart To Know?” Because my three darlings need to know what is in my heart; and I wish for them to carry my love for them in their own.


I get asked frequently about how I stay optimistic in the face of ALS. The truth is sometimes I’m not happy at all. I cry. I scream (silently, because I have no voice). I get angry. Sometimes I despise living with ALS.

Then I read God’s word and I am comforted. The Bible is chock full of uplifting verses. The Old Testament alludes to a Savior to come. In the New Testament, the Savior (Jesus Christ) is born! The first four books of the New Testament; Matthew, Mark, Luke, and John (otherwise known as the gospels) concern themselves with the pregnancy of His mortal mother Mary, to His early years, to His miracles, and to His death on the cross, His rising from the dead, and His ascension into Heaven.

Then I remember His miracles. Just like the man who Jesus made to walk again, He can heal me, too! Miracles do happen every day!

That changes my demeanor right away. No longer am I angry, nor do I cry or scream. Instead, I am filled with courage, optimism, and a giant love for Jesus Christ, my Savior.

John 5:8 – Jesus saith unto him, Rise, take up thy bed, and walk. (KJV)

How I Became a Born-Again Christian

First things first: the term “Born Again” gets a bad rap. It simply means that you recognize that you’re a sinner, and that Jesus lived a sinless life in our place. Then the Holy Spirit fills your heart with a bountiful love for God forever. That means you are “saved” or “born again.”

My conversion happened quickly. Although I’d been attending a Presbyterian church and learning much, music was the way that the Holy Spirit turned my heart from a nonchalant vision of God to loving the Lord forever. I had attended a Christian camp for teens, where we sang Christian songs about loving God. We were into a third song when I felt an overpowering feeling of love for the Lord. I began to cry tears of great joy as I continued to sing. I still get teary when I think of the moment I was saved.

What does it mean to be saved? As I said before, it’s the same as being born again. More importantly, Jesus Christ has led you away from a sinful life of unforgiveness to a sinful life of forgiveness. God will forgive your sins and fight your enemies. Best of all, once you belong to Jesus, no one can take you from him.

From a children’s hymn: “Jesus loves me this I know, for the Bible tells me so; little ones to him belong, they are weak, but He is strong. Yes Jesus loves me, yes Jesus loves me, yes Jesus loves me; the Bible tells me so.” Like the criminal who was hung on a cross beside Jesus, he asked Jesus if he could be beside Him in Heaven. Jesus said yes. This mere man, this criminal, who had never done a good thing in his life, asked of Jesus to save him from everlasting Hell, and Jesus did.

Luke 23:43 – And Jesus said unto him, Verily I say unto thee, to day thou shalt be with me in paradise. (KJV)

Life in the Slow Lane

I really don’t mind having ALS, but would I change it if I could? Absolutely! Until God heals me, and I don’t know if it will be in this life or the next, I’m living in the slow lane.

Life with ALS means perpetual slow motion. I type sloooowlyyyy because I have to eye each letter individually. I have to wait for someone to give me a drink. Yes, although I’ve had a tracheostomy, I can still drink. I loooove Dunkin Donuts blueberry iced tea. It’s so refreshing. My friend, Rise, makes me homemade herbal iced tea, which is muy delicioso! I have to wait patiently for my feeding through my G-tube, because it runs throughout the night. I have to be patient with everything.

Except for the past week. My mother, who, if you follow this blog then you already know, is my primary caregiver. However, she has been in the hospital for the past seven days. My darling and loving, younger sisters, Cathy and Cindy, took over right away. They scheduled someone to be with me 24/7. They would grind my pills for the day and night, so certain people could give me my medications throughout the day and into the night. They and Mom flew my son, Danny, in from Florida, both to help and so we could spend time together before he left for boot camp. My niece, Missy, helped out too.

Mom came home from the hospital, and for a couple of days Cindy, Cathy, and Danny continued to help with my care, while allowing Mom to heal. Then Danny flew home and it was just me and Mom. I praise God for Mom every day; and for the family who helped in our time of need.

Luke 10: 33 – And a certain Samaritan, as he journeyed, came to where he was: and when he saw him, he had compassion on him. (KJV)

I Will Continue

After my two hospital stays, at the beginning of the last two semesters, I had figured I wasn’t meant to get my Masters degree. But I’ve decided not to give up on my dream.

After the summer, I intend to sign-up for my next course. Until then, I will be reading and writing, including my blog, which you are currently reading.

Until next time, my dear readers, be blessed.

2 Samuel 7:29b – With thy blessing, let the house of thy servant be blessed for ever. (KJV)

It’s About Him

This blogger reminded of two things…

Healing with Christ

I asked myself just now—writhing in hellish nerve pain that has traveled up to the middle of my thighs because of John Ellis’s healing water: what am I supposed to learn from all of this???!!?!?!!?!!!?!!?

Then I remembered the answer what’s-his-face taught me—if you haven’t healed from something…it’s because it’s serving a FUNCTION in your life.

So then I effing realized—deep down to my very bones, finally, the lesson I’ve been VERY aware of needing to learn but somehow, unable to learn until now: it’s not about me. It’s about Him.

It’s not about Nicole, who <insert whiney voice> jumped off Webb Hill and went to Heaven and who’s been the focal point at my proverbial coffee table ever since—it’s about Him.

And right when I realized that—just for a couple moments—the pain suddenly lifted.

For a few moments…but it was enough; I’m realizing that if something is in…

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ALS Means Nothing to Me

I’m in the process of being accepted into Southern New Hampshire University’s Masters program for English and creative writing. At the onset of living with ALS, I earned my Bachelors degree for English literature. I always had a dream of being a PhD, and the Masters degree is the last before a doctorate.

When I say “ALS means nothing to me” or “I am living with the disease” I am saying, despite outside appearances, I don’t accept ALS is a part of me; it is outside of me. With that, I won’t let this disease define me.

If you are living with this horrible diagnosis, I invite you to mindfully disconnect your disease and follow your dreams. Do what you want to do. Tell ALS off and never invite it in. You have the mental strength to achieve your goals!

Psalm 28:8 – The LORD is their strength, and He is the saving strength of His anointed. (KJV)

The Ten Commandments

Before I list them, I have to tell you that although I’ve rejoined the Catholic church, I’m a Protestant at heart. I follow and read, every day, the King James Version of the Bible, rather than the Good News Bible, as most Catholics do. Why? Because I believe that the more you “Dumb Down” a Bible, you walk away from the original meaning. I don’t believe the Apocrypha has a place in any Bible. Further, I believe the KJV is beautiful in its translation.

The Ten Commandments can be found in Exodus 20 and in Deuteronomy 5. I give you the Ten Commandments:

  1. And God spake all these words, saying, I am the LORD thy God, which have brought thee out of the land of Egypt, out of the house of bondage. Thou shalt not have any gods before me.
  2. Thou shalt not make unto thee any graven images, nor any likeness of any thing that is in heaven above, or that is in the earth beneath, or that in the waters under the earth: thou shall not bow thyself to them, nor serve them: for I the LORD thy God am a jealous God, vising the iniquity upon the children unto the third and fourth generation of them that hate me; and shewing mercy unto them that love me, and keep my commandments.
  3. Thou shalt not take the name of the LORD thy God in vain; for the LORD will not hold him guiltless that taketh his name in vain.
  4. Remember the sabbath day, to keep it holy. Six days shalt thou labour, and do all thy work: but the seventh day is the sabbath of the LORD thy God: in it thou shalt not do any work, thou, nor thy son, nor thy daughter, thy manservant, nor thy maidservant, nor thy cattle, nor thy stranger that is within thy gates: for in six days the LORD made heaven and earth, the sea, and all that in them is, and rested the seventh day: wherefore the LORD blessed the sabbath day, and hallowed it.
  5. Honour thy father and thy mother: that thy days may be long upon the land that the LORD thy God giveth thee.
  6. Thou shalt not kill.
  7. Thou shalt not commit adultery.
  8. Thou shalt not steal.
  9. Thou shalt not bear false witness against thy neighbour.
  10. Thou shalt not covet thy neighbour’s house, thou shalt not covet thy neighbour’s wife, nor his manservant, nor his maidservant, nor his ox, nor his ass, nor anything that is thy neighbour’s.

John 14:15 – If ye love me, keep my commandments. (KJV)

Why I’m so in Love with Life

ALS has been a bane in my life, but it hasn’t stopped me from finding joy in every day. I’ve had two milestones in the last two weeks.

First, my eldest son added a grandson to my grandchildren! I now have Loki and Leon, the loves of my life, along with my children and my daughter-in-law. Oh, how I love them all!

Second, My 48th birthday. I had a party with my immediate family. My children were there, along with my mom. My daughter, who lives in Minnesota with her boyfriend, whom I adore, was present by facetime. I had a wonderful time with my family!

I also had a surprise party with my two out of four best friends, Katrina and Sherry. I was shocked when they came in with a plethora of balloons, gifts, a special cake, and singing “Happy Birthday” smiling their sweetest smiles.

I look around my bedroom, at the gifts and the balloons, and feel the love my family and friends have for me, even on a normal day like this one! There is happiness to find in every day, you just have to open your eyes!

3 John 1:4 – I have no greater joy than to hear that my children walk in truth. (KJV)