But a breath…

Yesterday I was sadly reminded again how very short life can be. Unfortunately the life that was lost was a beautiful 19 year old soul named Jarod. Everyone at the funeral spoke the same words about this precious boy. How he was joyful and loved everyone he knew. Jarod sadly was another senseless death due to the hands of the terrible disease, addiction. I can not even fathom the pain and grief this family is going through.

As February began I felt something well up inside of me. It took a few days to put my finger on it, but last year Mama met Jesus in February. On this same day a year ago, I had no idea my life was about to change forever.

Mom and our family fought a long 8 year battle with Early Onset Alzheimers. Those years were hard. Most days I could not see my life at the end of the tunnel. It has been said our generation is often called the “sandwich generation” because we are having to care for our children AND aging parents. It isn’t fair, but it is a very real reality and the numbers are increasing as our parents age. Mom got her Diagnosis at almost 61 and by the Grace of God we got pregnant with our first child soon after. It had taken us 5 very long dark years to have a baby. I felt torn daily in caring for my newborn and my Mother. I remember the day my first child was born I sobbed for hours because my Mama couldn’t be there. All I wanted was my Mom to share in this moment and Alzheimers had ripped that away from me. We were then Blessed with two more children in the year and a half to follow. Caring for her and all of my children became increasingly hard.

I remember one time Mom had to be transferred to the hospital and I was with her in the ER room with my youngest daughter. Mom being pretty far into her dementia at this point didn’t want to stay in the bed. Realize her young body kept her VERY active until the last year. My baby girl started wailing loudly during the chaos of trying to keep mom in bed. Her feeding schedule didn’t wait for me to make sure my Mom was ok. She was starving. When the ER nurse finally walked in I had my baby on my breast nursing and one leg physically holding my Mom in the bed. It was not my brightest day.

One night out of the blue Mom aspirated. It didn’t look good. In an instant, everything changed. This was always a fear of mine and something that is almost impossible to prevent. In the end stages of this horrid disease patients will forget how to chew and swallow. Aspiration is when fluid of some sort gets in to the lungs. It can happen from eating, drinking or even from saliva in the mouth. It is a very common way to die for Alzhimers Patients. I remember rushing up to her facility that evening of February 20th. Her hospice nurse (who we had for years), didn’t have high hopes and suggested we start making end of life plans. I was frozen. Even after caring for Mom for all of those years, the reality of the end was never planned. I had assumed I would be prepared for this moment since I had grieved for so long. I was very wrong. It took my Mama seven days until she went into the loving arms of her Lord and Savior. That is a story for another day as I learned so many lessons during that time. I felt like Mom’s theme song of those days was, “My Way” by Frank Sinatra. During that time she celebrated her last Birthday. 69. That night was one of the most incredible nights I have ever experienced in my life.

Mom’s Birthday is February 22nd and I knew it was going to be a special day. She loved Birthdays and a good party. My children: 5, 4 and 2 at the time had drawn her Happy Birthday pictures. I had taped them to the wall by her head. The facility had bought her a beautiful Birthday balloon bouquet. During the day some of her favorite visitors came to visit. The angels that were placed as Mom’s hospice company workers, especially her nurse, Gloria, social worker, Christina and Chaplin Morris. And my sweet husband, who I am pretty sure she liked much more than she liked me! For those 7 days, I was there almost everyday all day. He had to take over the house with our small children. It was rough. Luckily our village, our precious God given villiage also stepped up BIG TIME! Chris seeing her like this for the first time broke me in two. My strong and tall man, was mush. She was loved hard on her Birthday.

That early evening of her Birthday I was alone with her. Up to this point I felt strong. I had been reading my bible to her, listening to music and people had been there to help me though this. I started to feel weak and alone. When it comes down to it, during the time when someone’s family is dying…they need support. Even if you don’t know what to do, think of something. Anything. They do not know they need it, but they do. About an hour into this solitary realization of the brevety of what was happening, only something God could do happened. My village showed. Women that are closest to me came one by one. They brought smiles and hugs. As women started to show up, we would add more chairs into my Mom’s small room. The room’s walls were filled with love letters from her big brother, Jim who wrote to her every week. Each week the amazing staff at Autumn Grove here in San Antonio, put them up for her. Some were long tales of their childhood together, some pictures he would color for her. Each one specially made for his baby sister. Each woman who attended Mom’s Birthday party that night will tell you that the room was filled with The Holy spirit. It was a room that I will never forget as long as I live. We read scripture, we laughed, we cried. Sometimes there were no words. We visited with Ms. Mary who is nothing short of a powerhouse of a woman, who at 90 something brought smiles and joy. My little sister (half sister) who was also about to give brith mind you, showed up with an ice cream Birthday cake! It read, “Happy Birthday Melanie.” My sister is an angel. Mom and I love ice cream, it was the perfect ending to this day. The feeling in the room was heavy as we started to light the candles. Someone then realized Mom’s oxygen machine was still in the room. YIKES! We all about died laughing at the fact that we almost blew everyone up! As Mom’s end of life nurse, Mike wheeled it out of the room the candles were lit. Each of those women joined me as we sang my sweet Mama Happy Birthday for the last time.

Fast forward a year and I am still hurting. I feel like most days/months I bury the pain and grief down deep. Suppressing it because I honestly didn’t know how to process the fact that my Mom was no longer on this earth. Therapy did help, but after a few months I was feeling better. Then another wave hits unexpectedly. My nephews high school graduation that she should have been at yelling louder than anyone in the auditorium. The times when my kids do something adorable/ridiculous and I want nothing more than to hear her reaction to what they did. Seeing a cardinal ornament during the Holidays and literally running out of the store crying. It doesn’t end. At first I kept wondering when it would “be over.” When the pain would stop hurting so bad. The phrase “it comes in waves” could not be more true. With a great loss the pain is never truly over.

Realize I have experienced grief many times. Maternal/Paternal grandparents (My Maternal grandfather also died of Alzheimers),(My Paternal Grandfather died from falling off a ladder and hitting his head), a good friend in high school Amy in a terrible car accident, my half sister Stacy dying of breast cancer, my uncle Eddie of a random heart attack and my nephew Luke who died tragically in a house fire almost two years ago. Even after all of that loss, nothing prepared me for losing my Mom. Nothing.

As I spend this next week in reflection of my Mom, her life and the year since she has been with us, I leave you with this. At the funeral today the father of the boy who died spoke bravely to all that attended. He said so many amazing things about his son and his life. But the one that stuck out was the story about his own Mom and some life lessons she gave him. She taught him to never not say “I love you and goodbye” to the ones you love. You never know when our last day will be and you don’t want to regret your last words to someone you love. Jack’s last words to his little boy Jarod was “I love you and goodbye” and he will always be thankful for that. I hope that you can start to implement the same things with those that you love. God says that life on earth is “But a breath.” I pray that you love hard on the people that mean the most to you. Tomorrow is never a guarantee.

Many Blessings my friends!

“Lord, remind me how brief my time on earth will be. Remind me that my days are numbered- how fleeting my life is. You have made my life no longer than the width of my hand. My entire lifetime is just a moment to you; at best, each of us is but a breath.” Psalm 39:4-5

It is Ok to not be Ok

Last night I realized that we are one day away from the yearly Walk to End Alzheimer’s here in San Antonio. As I listen to the song, “It’s gonna get better” by The Stars go Dim, I know that it will get better. Honestly between you and I, I have been trying to suppress most of the emotion involving Alzheimer’s and the walk. Each year I was always so excited and proud to go to the walk knowing that I had done by best to raise funds and awareness. Last year I was even on the committee for the Alzheimer’s Association to help plan the walk. I keep finding excuses not to go tomorrow. Usually by this point in the month of the walk I have posted something almost every day, gone live on Facebook, sent text, emails and a for few years I even organized fundraisers to raise money for the cause. Truth is…. Alzheimer’s has left me speechless for quite some time now.

The two pictures of my husband and I with my Mama during her last days will always be close to my heart. God sustained us. He kept us strong and faithful and even through the sadness, there was so much beauty in Mom’s passing.

8 years ago I received the news that no 30 year old should have to get. My mom was diagnosed with Early Onset Alzheimer’s at 60. She would never get to be a Grandma (the kind she always was wanted to be) to my then unborn children. Alzheimers you see, has no cure. My world was shattered, yet I went into battle mode because that is what my Mama taught me to do. To fight. And I did. For most of those years I raised money, lots of it and awareness to show everyone what our fight looked like. How Alzheimer’s wasn’t an “old person’s disease” and that everyday people (young and old) can get it. That it is an EPIDEMIC and the 6th leading cause of death in the United States. That if the disease diagnosis keeps growing in the rapid numbers that it is, that it will BANKRUPT our economy! My mom’s monthly care was astronomical. Another tidbit I always like to tell people is that if your parents (or you) do not have long term care insurance, get it now! The cost and time associated with Alzheimers is almost impossible for the everyday person to handle.

With Mom – October 2012 at our gender reveal party for our first child.

Those years were long. The daily pain of having someone with Alzheimer’s seemed almost unbearable. Watching everything I knew of my Mom slowly slipping away. From her calling me “fat” when I became pregnant with my first beautiful Blessing (something she never would have done), to forgetting my Birthday, then later my name to lastly forgetting how to walk and talk. Every time I saw her I cried. Ugly cried. I begged God to take her somedays because my heart couldn’t take much more. I grieved the loss of my Mom for eight long years.

Four days after my beautiful Mama, Melanie turned 69 years old, she went to be with Jesus. Since that chilly afternoon in late February I have never been the same. Grief has resided in almost every one of my days since her passing. It seems as if it is an invisible layer underneath the surface. That at any moment, an overwhelming wave of sadness could take over. And it did. Often. Grief is a funny thing and even though I felt as though I grieved losing her everyday while I was still physically with her, my Mother leaving this earth is an emotion that I am unable to put into words. It is devastating.

Two days before Mom’s Birthday is when she started her slow decend to Heaven after she aspirated and was never able to recover. The night of her Birthday my friends gathered in her small room. With them they brought smiles, prayers, hugs and a cake and we sang her Happy Birthday.

This past weekend I attended a woman’s retreat through our church and I finally felt like I was able to release the anger and sadness to God. I have come to the conclusion that I will never be the same as I when my Mama resided on this earth. I thought I would be happier when she was gone. Knowing that her pain and suffering was over. Yet, when the day happened that she took her last breath as my brother, my husband and I held her hands, I wasn’t relieved. I was heartbroken and lost. My life was going to have to reset and have a “new normal” which didn’t include caring for my mom.

The great news is that I have a good God! One of comforts me in times like these and someone who gives me hope on the days when I think I can’t go on. Fast forward almost eight months and I am still sad, but God reigns supreme in my thoughts and actions. I know that this hard journey that Mom and I slowly glided through, was meant for His glory!

I have heard many times that you can’t control what happens to you, you can only control your reaction. I will not give up my fight against Alzheimer’s!! ! I will continue to tell her story and I know that someday there will be a cure. My prayer is that no other family will have to suffer the heartache of watching their loved one slowly and painfully slip away.

“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.” Romans 15:13

Please share our story and raise awareness to help END ALZHEIMER’S DISEASE once and for all!! We would also love if you could follow the link below and donate to our walk team, Melanie’s Memories Matter. Every little bit counts!

http:// http://act.alz.org/goto/Melaniesmemoriesmatter

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” Psalms 121:1-2

Many Blessings,

Tk

My beautiful family. This was our last picture all together with Mom. Thanksgiving 2018.
My oldest daughter, Mom and I. Mothers Day 2016
Mom and my oldest daughter in 2013. She lit up when she spent time with her at the beginning stages of the disease.
How I choose to always remember my beautiful Mama, Melanie Sullivan.
At her happy place, on the beach.

The Lord’s Provision

This morning I had a pleasant surprise to have my favorite yoga teacher cover for the regular teacher at that time slot. I had not done yoga for over a month and honestly really needed it since my mom passed last week. There is something so restorative about yoga. It always puts my mind and body at ease. Keeping up with my fitness through this grief has been a challenge and I almost didn’t go because my favorite teacher wasn’t on the schedule, but I pulled up my big girl panties and went anyway. So thankful I did!

She started the class off with a Rumi quote that I can’t get out of my head.

This saying kept resonating in my head and I realized that in this season of grief how very thankful I was for how God has showed up in ways that I never thought possible. For those of you who know me well, I hope you would agree how much I love others. One of my favorite things in the world is to get to know people and find out their stories. My ability to connect with people has gotten stronger over the years and honestly it is like a muscle. Little by little, the Lord has been molding me into the woman I am today who values her relationships greatly. And in this time of need I have had amazing, beautiful people pour into me when I needed it most. Some friends have done things over the past few weeks that I didn’t even know that I needed! I have to give an example of my sweet friend Naomi who the other night not only fed my kids and I dinner, but then kicked me out of the house for a few hours so she could do the bedtime routine. Praise God! When I returned home, not only were my kids safe and sound in bed, but she had organized a cabinet that I literally hated to open because it was so unorganized. She was unsure if I would be ok with her doing it and the first thing I did was throw my arms around her neck and thanked her over and over. Community. My village is so amazing.

My encouragement to everyone out there is not only the importance of having a community surrounding you that wants you to win, but also realizing that we all have our own roads. Our own journeys in life to travel. My road will never look like any of my friends, but I know that by loving others, loving God will bring fruit that the Lord has in store for me. One of my gifting is connecting and I challenge each of you to ask God what your gifting is and how you can serve the Kingdom with it. I can almost bet that God will show up and show off and Bless you and others along the way!

“A spiritual gift is given to each of us so we can help each other” 1 Corinthians 12:7 NLT

Life without my Mama

Hard to believe that it has been five days since my beautiful mother, Melanie went to heaven. I remember the day after she died I woke up thinking,” Well, this is the first day of what it feels like to have your mom no longer on this earth.” Such a heavy feeling.

Mom had been battling Early Onset Alzheimers Disease since her diagnosis over 8 years ago at 60 years old. During those very hard years with her having the disease I grieved many things. The loss of my own mother not knowing my Birthday, her not being present at the birth of our three children, forgetting my name, how to talk, how to walk and so much more. That grief was different than what I am currently feeling. That grief was a slow, long drawn out pain. This current grief has some relief and even though I feel bad saying it, it is true. My mom no longer has Alzheimers. She no longer has a brain that can’t seem to work correctly and a body that even though was only 69 when she died, that forgot to do the most basic parts of life. She is currently dancing in heaven and riding her horses. Watching her slowly die in front of me from week to week was almost too painful to bear. She had stopped walking and eating solid foods within these last 6 months and some days I had to make myself go visit her. It was just so hard and I ugly cried every single time I went. Not seeing her beautiful radiant smile when I saw her felt like a knife slowly pressing into my chest. I wanted my mama back and this wasn’t her.

Having my own small children at home: 5, 4 & 2 and then also caring for my mother with Alzheimers, had stretched me so thin. Even though I miss her more than I can even verbalize at this very moment, I have so much peace that she is no longer on this earth suffering.

So thankful for so many things including my strong faith in God. I know without a doubt that I would be in a much darker place without the strength that He has given me on this journey. At church last night the message was about Psalms 23 and I am clinging tightly to that word.

“The Lord is my shepherd. I have everything I need. He gives me rest in the green pastures. He leads me to calm water. He gives me new strength. For the good of his name, he leads me on paths that are right. Even if I walk through a very dark valley, I will not be afraid because you are with me. Your rod and your shepherd’s staff comfort me.” Psalms 23:1-4 Last year around this time I went through a very dark season in my life and the only thing that I could do was lean on Him to get me though. Little did I know that He was also preparing me for what was to come.

A friend told me that this grief would come in waves and it seems to be doing just that. One day I am fine and then something sets me off. A picture, a song, my mind randomly replaying me laying in bed with her for those 7 days as she glided into heaven. Then out of no where the wave hits and seems to almost knock me off of my feet and the tears fall hard and fast. Another hard part will be that I no longer have to take care of her. I am sure “caretaker grief” is also a thing. Not having to worry about her bills being paid, taxes filed, doctor appointments to get to, if her bed alarm is working, mats under her bed properly placed or if her food is being properly pureed. That part hasn’t hit me quite yet, but expecting it soon. Pretty sure this week I will have to clean out mom’s room at her facility and I honestly am not looking forward to it. Walking into her room without her in it will no doubt be terrible. Prayers for the days, weeks and months to come as we all grieve the physical loss of my mom.

Alzheimer’s Disease I hate you and will stop at nothing to find a cure! Please donate to our Walk to End Alzheimer’s team, Melanie’s Memories Matter to join us in fighting against this horrid disease!

http://act.alz.org/goto/Melaniesmemoriesmatter

Thank you Kay Harmon Photography for this photo shoot with our mom.
Mom, my brother Ryan and myself. 2015

The day my niece was born

Yesterday was the 8th Birthday of my sweet niece, Jaidyn.  How in the world is she already 8? 

“JJ” as all the cousins call her, was the first little one of my four siblings that grew up in our house.  The baby was having a baby!  We had older siblings that had children in Waco, but we were young ourselves when it happened. We became Aunts and Uncles before we were even 15 years old.  Jaidyn was extra special.  Not only because she was the first, but because she was the light in so much darkness in 2010.  I will never forget the call from my dad that my grandfather, “Daddy Bob” had died.  I remember throwing the phone across the room with an intensity and anger that my husband had never seen in me before.  Following with uncontrollable sobbing and hyperventilation.  I couldn’t breathe.  My hero was gone and I didn’t even get to say goodbye.  The man that carried a peace about him that no one else to this day has ever had.  My sweet Daddy Bob had been changing a light bulb on the front porch of their Houston home and had fallen off the ladder and died instantly.  Heartbreak.  I believe that we always thought my Granny would be the first of the two to go.  She had been battling health issues for years and my Daddy Bob was always clean on his health bills.  How in the world did this happen?  The days and weeks that followed were that of extreme sadness and exhaustion.  My grandmother no longer had the love of her life and the man that took care of her every need.  She was in shock and heartbroken along with the rest of us.  I went to stay with her and then my step mom did also, but she just wasn’t the same after he died.  Her will to live wasn’t there as it was before.  She was transported to San Antonio via ambulance to be admitted into a rehab facility and was closer to all of us.  It was good to have her physically near us, but she was never the same.  She was able to make my sisters baby shower and was excited for this sweet little Blessing to come earth side.  A week before my sister was to give birth to Jaidyn, Granny made her way up to heaven into the loving arms of her precious husband.  Sadness again filled the family as we had officially lost the heads of our family within months of each other.  

The day of Jaidyn’s birth was a happy one.  The entire family was there and waiting as the birth had been a scheduled c-section.  Even though the recent grief, we were all ready to meet this little miracle that God had given my sister.  There were a few things they wanted to look at on her once she was born and it took what seemed like forever for her mama to hold her for the first time.  And for all of us to finally meet her.  She was the most beautiful baby girl I had ever laid my eyes on.  A tiny little thing at 5.3oz and just perfection. I will never forget that my uncle Eddie refused to leave until he got to see her and hold her.  He absolutely loved children.  He was so excited to have a baby in the family finally!  Once he held her he told our Nana & Papa that they could go home.  Uncle Eddie had special needs and was truly a gift from God. He wasn’t supposed to live past 3 and with my Nana’s strong will and Eddie’s determination he beat all the odds!  Leaving the hospital we were all so excited and happy.  My other siblings and our spouses all went to our parents house to celebrate the arrival of this precious baby girl who had changed our family.  Then the call came… My Nana.  Hysterical.  She had gone upstairs and found my uncle Eddie unresponsive.  Heart Attack.  He was gone.  On one of the happiest days in a very long time, it was also the darkest. On the day Jaidyn was born, Eddie died.  An extreme roller coaster of emotions that were almost too much to bear for all of us.  

Every year on her Birthday I think back to the months that preceded and followed Jaidyn’s birth.  I remember my Grandparents, my uncle and thank God for the Blessing that is my niece.  It is a reminder to me that even during the darkest of times, there is light.  Even if you have to struggle to find the light, it is always there.  It may not be in the form of a beautiful baby girl, but God will show up.  He always does.  2010 was one of the hardest years of my life to date, but I don’t wish that it never happened.  I keep thinking of the sermon that I heard at church last week on the book of Judges.  God sometimes has to weaken us before He uses us.  (Judges 7:1-7)  At the ripe age of 29 I had seen more death happen than I had ever experienced before.  I learned how short life is and also what a great God we have.  Even when the days seem hard, you feel like that you can’t seem to get out of “the yuck” as I call it.. look up.  Look to Him and know that once you fully rely on God, the peace that comes is indescribable. 

“Consider is pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.”  (James 1:2-3)

Blessings,

Tk