My Mom, the Perfect Caregiver

It was my Dad who came up with the idea of moving me from my home to live with my parents. Dad had been training Mom to help him. Little did we know, how sick my husband was, and he passed away less than a year of my living in my parents’ home. I wasn’t even able to say goodbye. That was in October of 2018.

Like I said, Dad was training Mom: He showed her how to use the cough assist machine, because I can’t cough on my own; he taught her how to feed me and give me my plethora of medications through my g-tube, which hangs out of my left side of my belly and goes directly into my stomach; the last thing he showed her was, in an emergency, how to put my trach back in so I could breathe. We had such an emergency when my trach did fall out.

By the time they saw what the problem was, I had passed out from lack of oxygen. Dad quickly grabbed my emergency bag and removed the extra trach, and then he pushed it into my neck. I could breathe again.

Dad was right to train Mom. Suddenly, in November of 2019, Dad passed away. That was about two weeks before Thanksgiving. His poor heart just gave out.

That’s when Mom became a Super-Caregiver. Despite her broken heart, she jumped right in and took over the care of me. Although she was scared once in a while, she never cowered and my care never diminished. You are my favorite caregiver, Mom. Thanks for the silliness, the crosswords, and the love. I’m blessed by God to have you. I love you so very much.

Matthew 19:19b – …Thou shalt love thy neighbor as thyself. (KJV)

The Love for Grandchildren

This post is both somber and fun.

I have a grandson named Loki. He is a hyperactive, obedient, ball of funny. I just love him so much. He calls me ‘Grandma Jen’ and gives me a hug every time he sees me. Loki’s just so darn lovable. At this past Christmastime, you should have seen his excited face as he opened his gifts. Ditto for his birthday.

I had been overjoyed when my son told me I was going to be a grandmother again! However, he and his wife recently lost that baby due to a high level of stress. She had been two months along. With my other son and his wife having difficulty becoming pregnant, my heart hurts for all four of them.

My heart hurts for me, too. That may sound selfish, but it’s true. I love being a grandma so much, I’d love for them to surround me, and give me fabulous hugs like Loki does.

Thanks for reading.

Job 1:21b – …the LORD gave, and the LORD hath taketh away; blessed be the name of the LORD.

You’ll Never Walk Alone

Did you know God is everywhere and at all times? With God encompassing us at all times, don’t you feel comforted? I imagine being safe in Jesus’ hand, all comforted and warm. God (the Holy Trinity) gave us the Holy Spirit, our Comforter, and the third Person in the Trinity.

Since God is everywhere, you’ll never be alone, if you’re a child of God. I haven’t always felt warm, safe, and comforted, for example: the day when I got my diagnosis, or the moment I knew I couldn’t feed myself, and, lastly, when I lost the use of my entire upper body. Those were devastating.

However, I now know to accept change one at a time. In fact, I’m dealing with a new and embarrassing problem right now. Although I’m facing this situation, I know God is doing this for me (giving me ALS and still keeping me happy and useful) and for His glory. And that’s good enough for me.

Enjoy this video:

Hebrews 13:5b – …for He hath said, I will never leave thee, nor forsake thee.

The Perfect Baby

My firstborn, Michael Stephen, Jr. was born to be a joy. He continued to be a strong and loving boy and man. My first beautiful memory of you is when you were a baby. I would hold you and we would dance together to Kenny G. Sometimes you would giggle, which would make my heart joyous because I love you so much.

I was so proud of you when you graduated from high school! You proudly went in line to receive your diploma. I was excited for you that your dad and Papaw could be there for your big day. It had looked to me that you very happy with your graduation party.

Another exciting moment: When you leaned towards me and said, “I’m going to ask Tabi to marry me!” I was elated! Tabi is a lovely girl, with excellent manners and a four-year-old son and he calls me “Grandma Jen.”

I have the sweetest picture of you and your sister, which is not available to me right now. You were holding your newborn sister, smiled with her, and then hugged her. Then you pronounced, “My baby.” You were so sweet (and still are!)

Another proud moment is when you bought your first home. You had worked hard in your yard and within your house. You even built a fire pit!

Like I said earlier, you were the perfect baby. You were drinking a whole lot of formula, at three weeks old, that we decided to give you baby cereal. It worked and you loved your cereal! You were drinking the proper amount and you were sleeping through night!

Matthew 7:24-25: Therefore whosoever heareth these sayings of Mine, and doeth them, I will liken unto him a wise man, which built his house upon a Rock: and rain descended, and the floods came, and the wind blew, and beat upon that house; it fell not: because it was founded upon a Rock. (KJV)

My Little Man

I figured that I’d written about my daughter, I couldn’t do my sons a disservice by not writing them a post. So, here we go!

My youngest son is Daniel James. He was a smile-bug from birth on. He was always with huge grin and was ever-pleasant. Danny, who goes by “Dan” now, gave me some trouble when he was in my belly. I had severe morning sickness, day and night, and I couldn’t stay awake. We had known that three children was our limit; I had wanted four, but he had wanted two. I’m so happy that I have my Danny. Maybe God brought Danny out so pleasant a baby to make up for the difficult pregnancy.

My favorite memory of you was when you studied so hard, and read books, so you could graduate from middle school. I was so proud of you when, after you worked through it all, you received your diploma!

My other favorite memory of you is the day you brought bride-to-be home so I could meet her. Her name is Kimberly Emily, and she is a beauty. I was thrilled to meet her, and she has become a daughter to me. No “steps” or “in-laws” in this family!

I remember the first time you were standing in your crib. You had on this very large, toothy smile, like you were so proud of yourself! I sure was! I think you had two teeth. You were wearing your blue and white striped onesie, as it was a summer day, and Daddy and I were smiling with you.

Another thing I love about you is your height! At 6’4″ tall, you are my gentle giant. Like your brother and your sister, you would stand by me when you believed I was being wronged, especially after I became incapacitated due to ALS. You were always a fabulous son!

You mean so much to me. I can’t put it into words. Maybe this would do: Do you remember the day you almost died at our friends’ house? As Christian mothers, we always taught you to obey immediately. In this case, it saved your life. You didn’t know this, but the back door you used to use, now opened far down to the basement, where a pile of concrete blocks were awaiting you.

The moment you opened the door, my friend yelled out, “Daniel, STOP!” You closed the door, and came in another door. If I’d lost you, I don’t want to think about it.

I love you, my little man, and your life-brightening smile!

Philemon 1:21 – Having confidence in thy obedience I wrote unto thee, knowing that thou wilt also do more than I say. (KJV)

My Beautiful Daughter

Her name is Kimberly Anastasia. She asked me if I would tell her a few stories from her childhood. I agreed, partially because I love the memories!

When she was in my belly, near to birth, she pushed her foot against my belly hard. It hurt, but the moment was joyful. I could actually trace around your foot and toes! I felt as though I was touching your little, baby foot. I was watching “Coal Miner’s Daughter” with your daddy until I had to push you out. Two pushes and out you came! You were so tiny, compared to your brothers, at 7 pounds and 3 1/2 ounces. I didn’t even need Pitocin (the medication used to put me into labor). You were such a pretty baby, that a coworker called you an angel! She really meant it.

There is a picture of you that I adore. It was a photo taken at Mikey’s baseball game. You were running towards me with your friends, and you were smiling such a contented smile that makes me overjoyed when I see the picture. It, right now, lives in one of my scrapbooking folders.

I call you my strawberry girl because you were born during the month when the strawberries are ripe and ready to be picked. Also, you had a little shirt that had a big strawberry on the front of it. I loved putting it on you, my strawberry girl!

You are my only daughter, and I love that you’re the one. I’m also happy that I got to dress you up in pretty dresses and beautiful bonnets.

My favorite memory of you is when you received your diploma. I was so proud of you. You lived through hell and back, yet they couldn’t keep you down! I don’t know if you know how tremendously proud of you I was that you could go through so much and still come out on top! That’s integrity!

Luke 8:48 – And He said unto her, Daughter, be of good comfort: thy faith hath made thee whole; go in peace. (KJV)

Equipment and Therapies Every ALS Patient Should Have

First, I must say that my version of ALS began in my left foot. So, all of the medical equipment may not be applicable to you. It all depends on which place your ALS started, and where you are in your ALS journey. I’m 11 years in my diagnosis this month. Since my foot was where it started, I went to my primary doctor, and he supplied me with referrals for physical therapy and to a therapist who developed prosthetics. I began therapy and made an appointment for the prosthetics company. When I went there, I received my first apparatus: It was a clouded white prosthetic to wear on my left leg and foot. The prosthetic had a swiveling hinge at the ankle. My therapist told me that I had “drop foot” and the hinge was to help me keep my foot up. Previously, I had been tripping over everything, especially stairs. Afterward, I hardly ever tripped. Next, I fell while walking up to my daughter’s school. I decided to use a rose-covered cane, figuring it would keep me upright, in addition to wearing my prosthetic. When both failed, my doctor then sent me for an EMG, electromyography. I had, by that time, been to see a neurologist in Philadelphia, and he sent me for another, long, 2-hour EMG. I was using a walker at that point in my journey.

Then, after two weeks, I went back to my neurologist, only to hear the dreaded diagnosis of ALS.

My husband and I had decided to put in an elevator, but we determined it wasn’t cost-effective. So, then we chose to move our bedroom downstairs, and found an aide to come in to bathe me and wash my hair. Mom found, online, a shower and a chair set, in which a nurse or an aide could bathe me in and do my hair. This set included a mesh chair with an open space to clean the genitals. It also came with a shower curtain, and a hose that would attach to a water source. For me, it was our kitchen sink. To catch my bath water, a plastic, blow-up tray was under me and my chair.

When I couldn’t sleep in a normal bed, we ordered a hospital bed, which was delivered and set-up in our new bedroom, aka our dining room. When I lost the ability and the desire to eat, I was given a gastrostomy (G-tube) in which my liquid food, water, and medications went directly into my stomach.

I was still able to move my upper body, while my legs and hips had become utterly useless, we decided to get me an electric wheelchair, which I could drive by myself. Oh, the freedom! I enjoyed that so much! Eventually, I needed a more sophisticated electric wheelchair that would grow with me as the disease progressed. For a while, I could still drive myself. As I lost function of my upper neurons, the drivers knob had to be placed behind me so that my dad could drive me.

I went to the hospital because I had pneumonia. I don’t remember them asking me if I wanted a tracheostomy or not, but my mom (who had a power-of-attorney over me, and she could do anything with me when I was not able to speak for myself, for example, I was unconscious) told me I had said yes to the tracheostomy. I can overrule her. This time, however, I wish I had gone with her and not had the procedure done. Mom is always right, I’ve learned from years of ignoring her wisdom.

After the pneumonia had cleared up, I then had to go to another hospital to see if I could get off the trach. I couldn’t. I did develop three bedsores, which would take no less than two years to heal. Right now, I’m going on three years, but my wounds are small.

When I couldn’t get off the trach, I immediately needed two nurses: a trach-trained nurse and a wound care nurse. Both have become friends, as are my aides. We’ve been together for years.

The addition of a life insurance policy is important. I’ve had my policy since way before I became sick. If you don’t have a policy, it may be difficult to get one after you are diagnosed. It’s also important that you have a Will and a Living Will.

The last device is an EyeGaze computer. Without it, I’d never be able to write, email, keep up with friends and family, and keep up with the daily news.

I’m so thankful to God for all He has blessed me with!

Ephesians 5:20 – Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ.

My Loving Caregivers

My now late-husband, Michael Zink (1957-2018), was with me when we, finally, learned of my diagnosis. So, Mike became my first caregiver. It was easy at first. I was still mobile with my walker and Mike would help me upstairs. He was so good to me. Mike worked from home, which was a huge blessing. Eventually, as my muscles continued to atrophy, I began to need more help than Mike could give.

Enter the nurses and aides. The ALS Association paid for an aide to bathe me, wash my hair and teeth, and do my dishes and laundry. I really appreciated them. It wasn’t until I had a tracheostomy that I needed a nurse.

My now late-father, Thomas Haas (1950-2019), would come to see me every day. He was retired, but he still worked part-time. Every single day, he first stopped by a local Dunkin’ Donuts and bought me a raspberry iced tea. He would always be over at 3pm. So, when he would walk through the door, he’d always say, “Tea at three!” And would walk in with a joyful smile.

Eventually, as my muscles were slowly giving up, Dad found he was helping a lot. So, he asked me and Mike if I wanted to live with him and Mom. I said yes, because I wanted to give Mike a well-deserved break. My dad and my mom then became my primary caregivers. Since Mom was still working, but with retirement on the horizon, she took care of me all night. I couldn’t always sleep through the night, which wasn’t good for Mom. When she did retire, it was a great relief for her. My dad had taken care of me all day long, and we had a lot fun together. That is, until Dad got sick. He died within a month.

Then my mom became my primary caregiver. Through her grief, she never wavered in her care of me. To this day, I’m still in her loving care. I also have a team of nurses and aides: Katrina, Sherry, Stacey, and Amelia. I don’t know what we’d do without them.

No matter what, we are never alone. Our Lord of Heaven and Earth will be with us, as He always has been and always will be.

1 Peter 5:7 -Casting all your care upon Him; for He careth for thee. (KJV)

Cindy and Me

Cindy is my youngest sister. She is exactly 5 1/2 years younger than I am. She was so cute when she was born; her sweet, cherub-like cheeks were so lovable and pinchable.

Being all those years apart, we really didn’t spend time together until Cindy was about four years old. She had spent the first two years of her life in and out of the hospital. Still, Cathy and I loved her. As Cindy grew up, we had plenty of time to play.

One thing that our mom and our grandma loved to do was take us to the shore where Cindy liked to bury me in the sand. We built sandcastles with motes, using our brightly-colored, plastic buckets and shovels. We collected seashells and found some beautiful shells, fully intact. We even found some seashells with their little critters still alive within their homes. At the time, we thought they were gross, and all of kids let them be. Of course, no trip to the shore would be complete without a few dips in the waters of the Atlantic Ocean.

We would have “school” in our garage. Dad and Mom had a large chalkboard with a small table and matching chairs in our school area, which was near the rear of the garage. In the winter, Mom or Dad would light the very large kerosene heater, which we knew not to touch, to keep us warm. It quickly warmed the entire garage. I would use dittos (when was the last you heard that word?) covered in a plastic film, so we could use them again and again. Some were Mathematics, others were Language Arts. All of them were fun! Cindy, especially, seemed to enjoy them.

Times weren’t always joyful. Cindy was being bullied by the several kids at her bus stop. When I heard they were going hurt Cindy, my baby sister, I decided to walk with her to her bus stop. They attacked us just as we walked up. I was able to get a few kicks and punches before I had to cover Cindy. I literally threw myself over her body and tried to cover her little head with my hands. The attacks kept coming. That is, until the blessed bus showed up. Then, the kids scattered for the school bus and I took Cindy home.

Cindy and I went to the shore mid-winter. It was kind of spooky, with only the local residents, not the summer tourists. We walked on the boardwalk, which had most of the many stores, games, and rides shut down until the following Memorial Day. We were excited to see that our favorite pizza place was open all year! We got a few slices of pepperoni pizza, and plain, and then we decided to drive around town and see what the locals experience.

We happened upon a bowling alley and decided to bowl a few games. Cindy was a lot better than I was at hitting down those pins. Needless to say, she beat me in all three games. I was happy seeing Cindy enjoy herself.

From there, we were in search of a restaurant for dinner. We found a quaint, little diner with great platters of food. Fully satiated, we headed home.

I really love my baby sister, Cindy.

John 15:13 – Greater love hath no man than this, that a man lay down his life for his friends. (KJV)