~She is still with Me~

Back in May of 2019, my family received an extremely devastating blow.

My beautiful grandson Liam who was only going to be turning 3 years old the following month, was diagnosed with Duchenne Muscular Dystrophy (DMD).

DMD is a muscle wasting disease that is terminal, there is no cure. 

It affects all muscle which includes the heart and respiratory system, including the lungs and diaphragm.

It predominantly affects boys, and boys with DMD are typically wheelchair bound by the age of 13.

They slowly lose the ability to use their legs and arms, and they eventually require assistance to breathe because the diaphragm weakens as well.

Death can occur at any age from complications associated with the disease such as rapid muscle breakdown (rhabdomyolysis) which can cause kidney damage and/or failure.

Death can also occur at any time due to respiratory infection and/or failure.

Any fall or blow to the body can result in fat embolism syndrome, which can be deadly.

But typically the cause of death in boys with DMD is due to heart failure. Life expectancy is only into the late teens, early 20s with the average age being 27.

It is such a devastating disease and my words fail to convey just how devastated we were after receiving this diagnosis for Liam. 

While waiting to receive the results of Liam's genetic testing, my daughter (Liam's Mom) and I had prayed endlessly.

We went to church and lit candles.

We prayed and pleaded with God.

We pleaded with God and begged that if Liam had to have Muscular Dystrophy that he have Becker's Muscular Dystrophy, since Becker's is a milder form of Muscular Dystrophy.

Boys with Becker's can walk for much longer, and life expectancy is much older as well, into the 40s and 50s. 

However, our prayers had been futile, and when we received the diagnosis for Liam it felt as though someone tore into my chest and violently ripped my heart out and smashed it into a billion pieces.

The pain and heartache ripped into me, deep down into the center of my core. My soul was completely shattered.

I kept it together and stayed strong for my daughter after we were told of Liam's diagnosis. My husband and I held my daughter as she sobbed, but the moment we arrived at my parent's home, and my Dad swept my daughter into his arms as she wept, I excused myself and said I needed to go for a walk. 

I exited my parent's home and my husband followed quietly behind me.

I got into our vehicle on the passenger side and asked my husband to drive. He asked where, I said, "Anywhere".

As soon as my husband backed our vehicle out of my parent's driveway and we had driven a few houses past my parent's home, and I knew that my daughter could not see me, I completely broke down.

Giant sobs escaped from my throat and completely wracked my body. I could not control it. The heartache and anger I felt just poured out of me and I wailed.

My husband just sat there beside me, not saying a word as he pulled our vehicle over to the side of the road. 

I then began screaming at God. Through tears, I looked up and out through the front windshield of our vehicle into the sky and just began screaming and swearing profanities at God. I had never in my life been so angry. I felt so let down. 

As I have stated in many of my posts on this blog, I have never in my life doubted the existence of a higher power or a "god". It has always been a "knowing" at a soul level so deep that I truly can not explain it.

But now, I felt lied to. I felt like a devastated child who had just discovered their parents had been lying to them about Santa being real.  

My sobbing was coming from such a deep part of me. It felt as though my sobs were coming from the depths of my soul, and as I screamed more profanities at God I could not quell the shaking that had overcome my entire body. Even my voice was shaking as I screamed and yelled. I was emotionally broken right at soul level.

The next few days were a blur as the reality of Liam's diagnosis sunk in and we began looking at what his future would now entail.

The next few months we were busy with escorting my daughter and Liam to numerous specialists appointments, to provide my daughter with every bit of the emotional support she needed.

We held my daughter up as she mourned the loss of the future she thought her son would have.

We held her as she wept, while she processed her son's new reality. A reality that she had no choice but to come to terms with. It was such an incredibly difficult time. 

During that time I was spiraling down and into such an incredibly dark place. I was becoming more and more angry with God.

Throughout my entire life I had experienced so many things that everyone including myself had always believed was "unexplainable" and those experiences had confirmed for me a strong belief in a life or existence existing after this earthly one.

But if there really is an existence beyond this earthly realm and "God" did truly exist, how could he/it permit my beautiful grandson to have such a horrific, debilitating disease?

Why does any child have to suffer with a terminal disease?

Why would a loving, benevolent God permit that? How could God allow it?

Perhaps I had been wrong all this time.

Maybe all of my experiences that I believed were "paranormal" were merely wishful thinking on my part.

Perhaps there was nothing for us after our physical body dies, and there really was no "god" or higher Consciousness. 

Although, as angry as I felt, deep down in the depths of my soul the idea that there really was no "god" or higher "consciousness" did not feel true or sit "right" with my soul.

Despite my immense anger, I still very much believed deep down, in an afterlife and a loving Creator.

But why, why did our beautiful Liam have to endure this? 

How were we as a family going to endure this?

How were we expected to live a full, happy life, knowing that we will lose Liam far too soon? 

One night I was still feeling so incredibly broken and completely abandoned by "God".

I had spent so many nights crying. Crying over Liam's diagnosis and what that entailed. Crying for my daughter, knowing what she was going to have to endure.

My heart and soul truly felt as though they both just could not possibly break any further.

On that particular night I was feeling so incredibly alone and abandoned because I had not had any reassuring dreams from either of my grandparents that everything was going to be okay, like I typically had experienced during any rather difficult time in my life. 

I was feeling so completely broken and was feeling heartache right into the very depths of the core of my soul. 

While laying in bed and crying, I then thought of the beautiful dreams I have had about my grandparents, where it was as if they had truly come to me in my dream to comfort and console me. If I had ever needed that, now was the time. 

I then thought back to my childhood and the beautiful memories I hold close to my heart. I thought of my grandparents, my beloved Nana and Papa, and their home that holds so many of my wonderful childhood memories.

I then began to cry harder.

I yearned for those carefree days and of seeing my grandparents who I loved so dearly.

I miss them terribly and their words of wisdom and felt like if I ever needed them and their wisdom it was now. I then began crying even harder. 

Through my sobs I spoke out loud into the empty darkness of my bedroom and told my Nana and Papa that I really, really needed them.

I told them how I was feeling so alone and lost and did not know if I could find my way back.

I confided to them that I was terrified because I had lost my faith in God and I needed to know that I hadn't been wrong, that God is in fact real. 

I then asked into the darkness, "Nana, Papa, have I truly been visited by you and other loved ones?"

I then asked my grandma through tears and sobs, "Nana, are you really here? Can you please show me that none of what I have experienced was mere wishing on my part?"

I then sobbed even harder and pleaded as I said, "I need to know that you are still with me and I need a sign that Liam is going to be okay, that you are with us and watching over him, and me. I feel so alone right now, and I need to know that I am not alone. Please give me a sign." 

I then laid in bed for some time crying. My heart was broken and it truly felt as though my heart could not take much more. 

A day or so later I woke up and began scrolling through Instagram. I had only scrolled past a few photos when one popped up that immediately caught my attention.

It was a drawing of a grandma sitting in a chair by a fireplace.

Standing beside the grandmother on either side was a little girl and a little boy. Another little boy sat playing on the floor with toys. 

I was stunned to say the least because the lady in the picture looked EXACTLY like my Nana!

She was even wearing pearls as my Nana always did!

What was also so shocking was that the fireplace in the photo resembled the fireplace my grandparents had in their living room in their house from my childhood. The same house that holds so many of my fond memories. 

The photo was accurate because my Nana absolutely loved children and doted on all of her grandchildren and great-grandchildren. My Nana was also forever baking and cooking and always wore an apron. 

I was suddenly overcome with so much emotion and began crying. But then an odd calmness came over me and I just knew without a doubt that my grandparents are still with me. I felt reassured that I am not alone.

I knew that my Nana heard me and had sent me my sign. I felt so calm and such an overwhelming feeling of love. The tears still fell though because I was overcome with emotion.

As the tears continued to fall I just sat in awe staring at the photo. I could not believe how much the lady drawn in the picture resembled my Nana. 

I called out to my husband. When he came into the room I immediately showed him the photo.

My husband never met my Nana, but he has seen pictures of her. I then pulled up an old photo of her and compared it to the photo that came up in my Instagram feed, my husband was speechless. 

I sat down on my bed as I cried some more.

I looked around the room and out loud I thanked my Nana.

I then cried harder. I had been feeling completely broken and had needed a sign, and she sent it.

That sign helped me tremendously and enabled me to find my way out of the darkness. 

I now realize that this is Liam's journey, and while I may not understand it, it is what it is and I am grateful to be able to walk his journey with him.

I am committed to making wonderful memories each and every day.

I realize that each day with our loved ones is a gift to be treasured and thankful for. 


A photo of my Nana

The photo that came up in my Instagram feed