The voice of alcohol

•November 13, 2023 • 1 Comment

Alcohol has a voice, and that voice speaks to us all differently. It may tell you that you need it for certain things or maybe it whispers “let’s just relax and have a fun night”. Maybe it only shows up for a weekend wedding, or a birthday celebration, it could be a staple to go with your Friday night pizza or possibly just to unwind after a long day.

For some people, the voice of alcohol is not so quiet. The voice may stay with them much of their day, sometimes whispering to them here or there throughout the day and sometimes it can be so loud, that it is all that you hear.

It might make you feel like you need it to survive, and not just survive the big things, but even the smaller things. A lunch date with a friend, a holiday breakfast out, and even making cookies with your kids for Christmas. It would like you to believe that “just a glass” will enhance your experience, whatever that may be.

One day, you might start believing the voice, and if you have trauma in your past (which who doesn’t) you might start agreeing with this voice more often than not. For some, the trauma is too great to face head on, so “just for today” you succumb to the voice, making any excuse to agree. “Don’t stop today” the voice will tell you, “you can start tomorrow”

The next day, you wake up and the voice is quiet, almost non existent, so you think it will be a great day! Yet, on the drive home from work you start to hear it again. “It was a long day” “so and so pissed you off today” “tomorrow is Friday anyway” You might think that it’s probably smarter or easier just to wait until Sunday to start, so you can start the week fresh. You talked yourself into it, and now feel grateful that you can go home and “unwind”with that glass of wine.

The voice is smart, it knows that there will always be something to toast, celebrate or mourn. When one holiday is over, there will be another one fast approaching. There will always be a reason to drink if that’s what you want.

I keep saying the same thing, because when you know, you know. That voice lived in my head for way too long, telling me so many things that I believed. I had EVERY REASON to pop open a bottle of wine while making dinner, a glass during, and another before bed. I believed the voice that told me this was the only way to “not feel”, even if it was temporary.

Everyone’s voice is different. Yours may not tell you it’s ok to numb like mine, but maybe it’s encouraging you:

“You’re more fun”

You are more social”

“Life of the party”

It may not really matter what your voice says, however, what matters is if you listen to it.

I found that there was another voice in my head as well. It was faint at first, but it was there. A clear, smart voice that craved something more than what alcohol could ever give me.

That voice was ALWAYS THERE, patiently waiting, but I always found a way to push it aside. Day after day, excuse after excuse.

“Everyone drinks like me”

“I don’t drink and drive”

“I don’t drink before five”

And the best…

“Anyone in my situation would be drinking everyday”

Slowly the clear voice started getting louder, telling me things that I started to believe, things that I started to want more than anything.

“You can do this”

You are strong”

“One day at a time”

Not everyone has a problem, and most would say that I didn’t either. Funny thing I have learned is, it’s not about how much you drink, but what that drink does to you. It’s that simple, one glass of wine or one bottle, after that first glass it changed me. I became someone who was not very nice to MYSELF and that scared me. I don’t want to think where I would be today had I not recognized that about myself. Self love I am learning, is the best kind of love. I am no good to anyone if I am no good to myself.

That clear voice saved me… saved me from myself.

1-4-21

Please reach out if you need help. I am worth it, and so are you!

The self love club 💗💗

Posted in Along the way, Back to life and living, Life after diagnosis, living, My journey, sobriety
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The elephant in the room for special needs parents

•November 12, 2023 • Leave a Comment

There are many things that special needs parents worry about, and I would imagine some of those things are very different depending on what diagnosis your child has. There IS one thing that I’d like to believe is the same for all of us. It’s a question, but a question that we never imagined being faced with answering, when deciding to embark of the journey of parenting.

What will happen to my child when I am no longer here?

Chances are, nowadays you know someone who is challenged with some type of disability. Most likely, that person lives with a parent, family member or caregiver who will be facing the exact question that I just posed at some point as they get older. Whether your child has a disability such as autism, or a progressive neurological disease like MLD, the worry is no different. There are more young adults today with some form of disability, where it will make living on their own a slim possibility.

So then we are faced with the question, who will be the one tasked with this huge responsibility to take care of our “child” (children) when we are no longer here.

It’s not something talked about too often, and I am sure it’s not something that parents, like myself and Hut even like to think about, but I do know we all hope in some way we will never have to make this decision.

The amount of anxiety that I have personally felt over this, is beyond anything I could ever describe. I live for today as I have slowly learned, but in the moments of silence, or the darkness of the night when all you can hear are your own thoughts, this is the ONE thing that I come back too more often than I like.

What is the answer?

It’s not simple, it’s hard, and for some, it’s impossible to contemplate this question and actually come up with an answer. There isn’t just one solution, in my opinion, there has to be many… or at least a couple.

Siblings – For us, this is not even an option that we would explore. Eric and Evan were not put on this earth to take care of their siblings. They have their own dreams to chase and we want to see them chase them and live their own life. Some people might not agree with this and I get it. It is a very personal decision. Once again, a decision that no one wants to have to think about.

Group home – Of course this has to be an option that people consider, but it definitely is not one that we want to think about either. Why, you may ask. I know people who have had to make this choice and once again, I get it. There are so many things to contemplate with this:

1. Vulnerability – Your child is vulnerable and cannot properly advocate for themselves or make the smartest decisions. They trust too much, which can definitely be a bad thing.

2. Safety – I’m sure we have all talked about the safety of group homes, or assisted living at some point. Maybe you know someone who was not taken care of properly. Many centers cannot have cameras in certain areas for privacy. How will you ever know if your child is ok and being taken care of?

3. Abuse – You don’t want to think about it, talk about it, or believe it, but it happens. When those that can’t fully take care of themselves have to rely on others, this is always a possibility. (Can you tell I have trust issues) It happens, we all know it does, but when the possibility becomes worrying that it could be YOUR child that it happens to, you want to find any other way to have your child taken care of.

Per the CDC, 1/36 kids are now diagnosed with autism. Out of those, 40% are non verbal and 31% have an intellectual disability as well. Can you imagine!! How many of these children will grow up being able to live on their own?!!

It’s going to be a huge problem as these special children like ours, and maybe yours grow into young adults and their parents continue to age, and possibly get sick or die. Yeah, it’s depressing but it’s something that needs to be talked about.

I know we are not alone with this worry or fear. I also know that our expectations might be different than others. It’s ok. We are allowed to disagree or have different opinions. The one thing we all can agree on, is many of us will be in the same boat one day, wondering the next steps of our adult children.

Knowing that I am not alone with these thoughts is comforting, I just wish these thoughts were not something that I ever had to contemplate.

If you are a special needs parent and have thought about this, please reach out. We need to support each other, especially in realizing that we are not alone!

I have a dream, and it’s big. One day I hope to see that dream come true, so parents like us know that our child (children) will be safe and well taken care of when we can no longer be here to do so.

Posted in Along the way, Back to life and living, Life after diagnosis, living
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When anxiety turns to panic

•November 9, 2023 • 2 Comments

It was a crisp fall day about 27 years ago when I unfortunately learned the difference between anxiety and panic! We had been married and in our home about two years, when a wasp (the catalyst) decided to change my life as I knew it (just one of the many times)

Hut had been shooting some hoops outside and I was inside doing the typical things that a new housewife does, when he suddenly walked in to tell me that he had just been stung by a bee. I didn’t think much of it immediately, but soon, when I saw the fear in him, I realized that this was not the typical bee sting. I remember calling his dad to see what he thought as Hut just didn’t feel right. We decided the hospital would be the best place to go knowing that something just felt off. As I gathered up the keys to his Tacoma, I could see things were changing quickly.

The typical route to the hospital would not work today as the bridge had been out getting repaired for the last few months, so I took another route. This was a time before cell phones, and as we headed up black rock road, I knew something was really wrong. He told me that his hearing was going so I stepped on the gas a bit more. Not but a minute or two later, he shared that he was losing his sight. I started to panic, but drove quicker.

At this point I knew we didn’t have much time and the closest place was my dads house, so I proceeded to speed there. As I was racing up 113, he started to lose consciousness, and his body started to fall on me. I was screaming for him to wake up, when I whipped into the driveway.

Now my dad typically was not home on Sundays, especially beautiful days like this, because he would normally be golfing. This was purely a crap shoot!

I screeched to a halt, beeping the horn of the truck incessantly. By now, Hut was sprawled across me in the drivers seat. I didn’t know if he was still alive as I screamed for help. My dad and step mom came running when they heard me, however, all I seemed to hear was buzzing and ringing in my own ears.

My dad got him out of the truck and laid him on the ground. I don’t remember who, but someone called 911 and at that point I escaped. I went to the furthest part of the house. I remember crouching in the corner. I was not prepared for this type of trauma and my body did not know how to handle it.

Thankfully I snapped out of it fairly quick, and ran to where he was in the driveway. He laid there with my dad, stepmom and I surrounding him while my dad was still on the phone with 911. We all waited, but thankfully it wasn’t long before they pulled in the driveway, two men jumping out, rushing over to him. I saw a needle go into him, which I would later find out, was filled with life saving epinephrine and before I knew it we were off to the hospital.

My dad and I got there the same time he did, and we could see them rushing him in to the ER, I could see the room that they temporarily put him in as the curtain was drawn just enough for us to get a glimpse of what they were doing. My heart was racing at the panic I was witnessing in those taking care of him.

He eventually was stabilized and they moved him to a different room in the ER which meant I could no longer see him. The waiting seemed like hours, when the doctor finally came out to talk to us. He was a very kind doctor, with a good bedside manner, explaining to me that he was very lucky to be alive. He shared that his kidney function was not where they wanted it to be yet, however he was stable and sleeping, and we could go back to see him.

I went back, and although it looked like he was put through the ringer, he was rousing, but I don’t remember what he said first. I’m sure it was in true Hut fashion, and he probably cracked a joke as soon as he could. As he would later say, he remembers nothing, and was “just fine”

Thats how it is when something traumatic typically happens. It might be happening to the person, but it is those watching who are temporarily affected the most. They are helpless! They can’t unsee, or un-hear everything that they just witnessed.

We were lucky he was alive and after a night in the hospital he came home. Things may not have changed for him, me, on the other hand, I was suddenly filled with panic. I actually didn’t even know what it was that I felt, but if you know, you know. Dread, impending doom, clenched body, heart racing, intrusive thoughts, adrenaline running through my body. My body was trying to save me, but save me from what? Unfortunately there was nothing that needed to be saved, so the panic continued to ruminate.

My anxiety was now turning into shear panic daily, and I would soon learn how our very own thoughts can physically affect every part of our body.

It would seem that I was no longer in control of what I thought, and my mind was becoming my worst enemy, it wanted to take me down!

It did do just that about a week later, but that is a story for another time.

Today I can tell you that nothing lasts forever, whether good or bad. Anxiety included! Keep forging ahead even when you don’t think you can. It does get better!!

Posted in living, My journey, the ride of my life
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Using anxiety as a catalyst for growth

•November 8, 2023 • Leave a Comment

I don’t remember a time that I wasn’t anxious.

When I found this picture tonight it so easily took me back to a time when I didn’t even realize how much fear and anxiety was coursing through me. I just thought I was different but never realized how different, until I grew into a young adult.

I was always a worrier, always afraid and never felt safe. I often wondered where these feelings came from, but just assumed it was the way I was born. Surely God made me different for a reason is what I had hoped. Maybe someday I would understand why.

I was about five in this picture and in kindergarten. My mom, brothers and I lived in Town Line Apartments. My parents had been divorced since I was two so I have no real memory of living with my dad. It was just us.

I went to Stoney Creek elementary school and my mom was dating my kindergarten teacher.

I loved school! I had friends, I could walk to my cousins house after school sometimes and I was happy, but there was a but. My teacher would sometimes throw us up in the air during school. The ceiling was a white drop ceiling, that you could push up if needed to get into the area above it. Our teacher would occasionally pick us up and toss us into the air, sometimes pushing the drop ceiling one way or another. I’m not sure why he would do this, but things were definitely different back then. One day when he was dating my mom, he came over to our house, and although I don’t remember much, I do remember the feeling of fear. Fear that he would come in and toss me up into the air like he did at school. I remember looking at him from the side window of our apartment while my mom was in the shower and me pretending like no one was there to answer the door. I think he knocked for quite some time and I sat there hoping he would just go away. The fear was felt all through my body, wondering what would happen to my head if he threw me up and I hit the ceiling. Would I die, would I need to go to the hospital or maybe he would drop me. Eventually he was gone, and I remember when my mom got out of the shower, me telling her that he didn’t come. Funny how even at five years old you learn to protect yourself and the thoughts you tell yourself, whether they are true or not.

Almost every candle that I have blown out on every birthday cake, selfishly has been met with the same wish, or more like a beg, “please God, I wish for peace in my heart”. Peace, so simple it seemed, but something that has evaded me my whole life.

Looking back, this was just the start of my journey with anxiety. 46 years of fighting my thoughts, the what ifs, and the wondering if I would ever be “normal”

My story is not over, in fact I would like to believe, the part about ME could just be beginning. I will continue to seek peace in my heart. I believe some day it will happen and I will never stop believing. I have also learned that without the many obstacles I have had to overcome, I would not be in a place where healing and learning are two of my favorite things, and not quitting are the things that I have learned to be most proud of.

Posted in living, My journey, sobriety, the ride of my life
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Escaping with alcohol

•November 6, 2023 • Leave a Comment

I often wonder how I started drinking more than I would have ever thought I would. Was it my anxiety? I have had anxiety since I came out of my mothers womb it seems. Maybe I was destined to be this anxious child. I know my mom had been anxious most of her life and my dad as well, he just hid it with his alcoholism. His functioning alcoholism. Was I destined to have a drinking problem, or just an addictive personality? Does it matter? Maybe, maybe not.

I have never fit in with adults, I didn’t feel like I had much to talk about with people, and I seemed to fit in better with the kids than adults. All I ever wanted to do was be a mom for as long as I could remember and I didn’t think about much else.

After my two youngest kids, Eli and Ella were diagnosed with a terminal illness, it seemed natural that when people stopped to visit, they would bring a bottle of wine. Everyone knew that I loved my red wine, it was my go to. Hut even started making homemade red wine. The truth serum of the neighborhood we would call it. Everyone loved it! That was before the kids were diagnosed, and to be honest, I was more of a beer drinker back then anyway. I never drank much until after they were diagnosed.

Pain… it makes you do thinks you never thought or imagined. It changes you, and it changed me. I wanted to escape and not feel anymore… even if it was temporary it was worth it.

How would I survive what the future held? I wasn’t strong. I felt weak. I cried a lot and isn’t that a sign of weakness?

These are the things that I used to think. It’s still hard to revisit the early days after diagnosis. So many things that I believed about my future as a mom were suddenly crushed and I felt like I was being punished. I surely deserved this, I must have done some really bad things that God allowed this in my life. A glass of wine before, during and after dinner gave me the liquid courage to believe that everything was going to be ok. I just couldn’t feel it all, and the wine helped me accomplish that…until it didn’t.

To be continued…

Posted in Along the way, Back to life and living, sobriety, the ride of my life
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Have you ever thought about quitting drinking?

•November 5, 2023 • 4 Comments

I remember the early days of contemplating sobriety and what brought me there. The late night google searches on the best ways to quit, wondering if other people drank like I did, questioning if I actually had a problem or if it was all in my head. Maybe you feel the same, wondering if alcohol is not serving you anymore. If so, you are not alone.

The reason of why I started relying more on alcohol to numb my pain are not as important right now as how I finally decided to stop and continue to choose sobriety for almost three years now.

I remember searching for a year of different ways that could help me stop or slow how much I was drinking . Most of what I found was related to AA and in my head I didn’t believe that I needed AA. I was not THAT person, I didn’t drive drunk, or start before 5. I never forgot what I did the night before, or got into arguments with people due to my drinking. Maybe I didn’t have a problem. However, that 3 am wake up call to pee, or waking up from being too hot would happen more often than I’d like to admit, and I was always drawn back to the idea that maybe alcohol was not the best thing for me. It simply was not serving me anymore, and my anxiety seemed to be worse, even though after the first drink it always seemed to be better.

One year no beer, was a website I had come across on more than one occasion when I contemplated quitting. It was a service that you would pay for and they would “help” you quit, through letters and motivation. I’m sure there was more to it but I was not ready to pay almost $1000 to help me with a problem that I was not even sure that I had.

I remember scoffing at the idea of AA when my therapist mentioned it to me. There had to be another way, and, if, and when I needed it, I would find the way.

When I decided to make the decision to stop, it was pretty abrupt and as many times as I had thought “after the holiday” or “after this birthday celebration” those days never came, and they never would. There will always be another birthday, or celebration, wedding or funeral where you want to toast someone. Waiting till you have nothing on the calendar, will never come, I can promise you that.

AA it was, zoom AA that is. I wanted this more than I wanted anything at the moment, and when you reach a point in your life like that, you will do anything to make it happen.

I cried, and cried, I was so disappointed in myself that I just couldn’t stop that nightly wine. My inner critic told me everything bad you could possibly imagine about myself, but somehow I knew that deep down inside, I wasn’t all those things that I told myself I was.

My story is long, it’s sad and it is beautiful, and for those that feel the same way, I am here to help you and make you believe in yourself again.

Part of me will always believe that I have a reason to drink, a reason to numb my pain, the pain that comes with having two special needs kids amongst a million other things. Life is hard, but you have it in you to do hard things. We all do, we are just so used to that little voice that continuously tells us how undeserving we are. that voice that tells us we can never succeed, that we can start tomorrow.

The tomorrow that I finally chose to start working on me, was the hardest, and most rewarding day of my life.

So much more to my story and there is to yours as well.

Alcohol does a number to you and just as an example, I will share a before and after picture below.

YOU are not alone and you can reach out anytime.

To be continued…

One month before I quit. Red checks, puffy face, all the time.

Almost three years sober. No redness anymore and puffiness is completely gone!

Posted in Back to life and living, sobriety
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When God is good but life’s still hard

•October 9, 2023 • Leave a Comment

I found this picture in a magazine years ago after the kids were diagnosed and when their bodies started to be affected by the disease. I remember sobbing as I pulled it from the magazine, clinging on to the hope that one day, they would both be this free again.

Free to run on the beach, and jump the waves without a wheelchair or a life-vest. I clung to this hope during some dark moments and I cling to it today. Just as I cling to my faith!

My faith is what gives me hope and keeps me going.

Without it, I don’t know where I would be today, eleven years after diagnosis.

It’s so much more than faith in God, its faith in goodness, in people, and faith in a purpose greater than what my mind could understand.

Although so many good things have transpired over the years, it doesn’t negate the pain. It’s like putting a band aid on temporarily. It helps for the moment but the pain is still there.

God is good, but life’s still hard

I heard this song almost 11 years ago and it spoke to me so much, that I play on repeat many days.

“No comfort in the greeting card
‘Cause God is good
But life’s still hard
And your heart just wants a reason for the world”

I think I have tried to find a reason for the world since I was born, many years before the kids were diagnosed, I knew that hard, and bad things happen and always wondered why. When certain things happen to you, it makes you question everything.

Today as I woke and remembered everything about the day that we got that dreaded phone call telling us Ella also had MLD, I can’t help but think momentarily why two of our children had to be on this life changing journey.

I pray, but not enough

I cry, but probably too much.

God sees, HE knows, and no matter the anger I may show, the the frustration I feel or the distance I may put between us at times, it doesn’t matter. I am loved through it all. For that I am grateful!

I wish I could be like others, but as my friend Ash would say, that is my inner critic, telling me what I SHOULD do, or how I SHOULD feel. I just need to BE! Be with my own feelings and watch them come and go, because that’s what they do. Nothing lasts too long. I learn a bit from each moment of pondering all the what if’s, and hopefully growth ensues.

To be honest, as much as I get mad that I am still sad and angry, when I look back is when I see how far I’ve actually come.

I’m learning to give myself more Grace, just as much as I give others, and that has helped. Why I have not been as kind to myself over the years as I have to others, is a learned mannerism and as much as I have learned that, I am slowly learning how to be just as kind to myself.

One day when my time on earth is through, I would like to know that I stuck it out, no matter how hard, all while showing my kids that it IS true…God IS still good, no matter how hard this life may get.

Posted in Diagnosed, Life after diagnosis, living, My journey
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How to “find” gratitude even when you don’t feel it

•September 24, 2023 • Leave a Comment

Sometimes you have someone who comes into your life who changes the way you see things.

I have this amazing friend who helped me find a way to remind myself of things I can be grateful for at the most surprising times.

One of those times happened this past week, when I had been feeling a bit overwhelmed and down. When I had be questioning the why’s of this challenging life, and feeling sorry for my kids and myself.

I was cleaning my closet, because purging can be cathartic for me. You know when you get rid of things you no longer use, wear, or need how good it can feel. Let’s be honest, my kids don’t need all my shit to go through one day, so going through it little by little is a win win for everyone.

I was going through the shelf with some old handbags, I must have tossed a bag back over my shoulder and knocked over my sneaker. When I did, something fell out on the carpet from inside the sneaker. When I saw what it was I couldn’t help but smile and say “thank you”

I’m not sure exactly who I was thanking, but I do know that Christie was one of the people I was giving thanks to.

Almost ten years ago Christie and I became friends and she has been a support with the kids from the start. She is one of those people you can have deep conversations with and feel comfortable being exactly who you are when you are with her.

In one of our conversations, she shared a great idea with me, that had such an affect on me, that I took her idea and incorporated it into my own life right away. This little idea is still showing up years later and reminding me that there will ALWAYS be something to be grateful for.

It’s quite simple … go to your local dollar store she said, and get some shiny stones. They come in small little netting bags of maybe ten per bag. Go home and open them up, as many as you want, and one by one put them in different places through your home or where you may want to find them one day. When you come across one, pick it up and remind yourself of something that you are grateful for.

Years ago, when I tried this, I had put them in such random places and forgot about them. Now, this isn’t the first time that I found one, but it definitely was the perfect moment and day for me TO find one.

I sat there on my closet floor and just rubbed my little gem, thinking of so many things that I have to be grateful for. Christie being one.

Gratitude is not always an easy thing to feel, especially when things are not going our way, however, you can BE grateful, even when you don’t FEEL it. Gratitude can help us get through those tough times and make us more resilient to the tough times ahead.

Today I re-hid my gem, knowing that before too long I will forget where I put it, but when I need it most, I’m sure I will come across another one.

So get yourself to the dollar store, and get some of your own gems to hide, because one day that gem that you find in the most unexpected time or place, can make you realize just how much good is among the not so good. 💗

Posted in Diagnosed, Diagnosis, Life after diagnosis, living, My journey, the ride of my life
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11 years living with MLD

•September 19, 2023 • Leave a Comment

11 years ago today our life changed on a dime.

Most of you have heard our story from the beginning, some have not.

The funny thing about that day, is I still remember what I was wearing, what we did in the waiting room, how the clock seemed to tick backwards as we waited for him to finish his MRI. Thats how it is when a pivotal moment happens. You seem to have hyper awareness of everything surrounding that day and it never leaves you.

They took him late, saying that another child needed to stay in his MRI longer, and we would want that same respect if it was our child. Of course we agreed and tried to pass time playing games with Eli while he was on his loopy meds. When it was his turn we kissed him goodbye and thought we had an hour to wait. After an hour, they came to tell us that they needed to keep him sedated longer to add contrast. Immediately, I knew this meant they found something. Darting out to the playground to call family and friends to ask them to pray was all I could do.

Back to the waiting room, and the technicians and nurses who were chatting us up not long ago, suddenly their smiles turned into blank stares as they passed us in the waiting room. They must have known, known that our life was going to change even before we knew it.

When hours had passed I had called the doctors office from the waiting room to make sure we talked to her before we left. The receptionist answered, asking if I was Mrs. Vivian. My heart sank as I answered “yes” She told me we could not leave until we saw the doctor.

After what seemed like days, they finally came to get us to say that Eli was finished. We walked back and we happily saw him sitting up in bed waiting for us. I remember looking at his smile, so innocent and pure. Joyful, even after being sedated for two hours. The doctor, along with a child life therapist was there with Eli. He would keep the kids busy while the dr took us into “the room”

I felt sad for her, as I could see it in her eyes. She didn’t want to say what she had to, she fidgeted a bit until I asked her to spit it out.

Did he have a brain tumor? No she replied. “He has a disease called Metachromatic Leukodystrophy. Clearly I thought there had to be a treatment, so I asked what we could do. She just stared at us and said “there is no cure” and “He might make it to 15 but there is no viable treatment”

I didn’t hear much that came out of Dr. Hopkins mouth that day, but I did hear progressive, terminal, and genetic. I only let that thought cross my mind briefly, because SURELY, our other kids would be ok.

We didn’t cry, we walked back to Eli and got him out of that bed as fast as we could to head home. A 45 minute ride that never seemed to end. Calling family and friends, not even believing what was coming out of our mouths.

We arrived home, friends had the boys and I remember when I saw them, my heart just sank. How could we tell our 11 and 13 year old boys that their brother had a terminal illness … and there might be more bad news to come.

I do remember a couple things that Hut and I agreed on (shocking I know)

  1. We would be honest from the start, with Eric, Evan, and Eli, even Ella to a point.
  2. We would not settle for “no treatment options”, we would never stop believing that we would find a way to save Eli’s life… and little did we know three weeks later fight for Ella’s life as well.

Our journey was just beginning and it has been filled with cup draining moments, along with cup filling moments.

With tears in my eyes, I can say that it has not been easy and it has affected everyone …albeit differently.

My baby boy, my terror for the first three years on this earth, turned loving and Godly young boy, how? Why? It’s so unfair when children get sick. And the thought of genetic testing for the rest of the kids, made me sick to my stomach.

Yet today is about Eli, His fight started 11 years ago today and I don’t believe he has ever stopped fighting.

He is my inspiration, my hero!

Our story is old, it’s been told many times, but to US this story is our life. This story won’t EVER be a thing of our past, but will continue until we are no longer hear to share it ourselves.

Sometimes, it’s healthy to look back, but for me, the only thing I get out of looking back now, is to be reminded just how far we have come when they said we never would!

💗💙

Posted in Diagnosed

When trusting your gut leads you to the unthinkable

•September 19, 2023 • Leave a Comment

These pictures were taken in July and August of 2012, just a few weeks prior to Eli’s diagnosis.

August 2012

People have often asked me how we knew something was wrong with Eli, or what symptoms he had before diagnosis, and I normally say there weren’t many, and the ones he did have were subtle. Our sweet Ella on the other hand had none that we could see. Her MRI shortly after diagnosis would tell a different story.

July 2012

For about a year before diagnosis, we would notice some slight intention tremors in Eli’s hands. These were chalked up to dehydration at the doctors.

As you can see in the one picture, Eli would stand a bit guarded. His arms were always a bit bent at the elbows, never really straightening out. He also seemed to be a bit slower than Eric and Evan, and thankfully we had something to base his differences on.

July 2012

Like I said, these few things were pretty subtle, but there was one thing in particular that led me to believe something was going on.

Eli’s field day in kindergarten… a day, or I should say a moment, that is seared into my being.

I will never forget watching him that day. It was a beautiful day outside and I was excited to be there just as I had been for the boys in previous years. We went from event to event until it was his turn to do the sac race. You know, you pick up the sac, jump in, grab the sides and hop to your partner. Well, if you have ever seen anything in slow motion, this was what it was like watching him. Suddenly it hit me that something was wrong and it was so painful watching him.

When it was his turn, he grabbed the sac and tried to get in, I will break here and admit I am the crazy mom screaming his name to “come on”. I could see that he just couldn’t seem to understand what he was supposed to do. Maybe he did, but he couldn’t put the three things together. Get in, hold the sac, and hop. I could see him thinking and trying, but it never clicked, so he just ran with the sac in hand to his partner.

It was in this moment that I knew my smart, God loving, girl crazy son had something going on that seemed to be challenging his brain. This began a quest for answers.

We started pushing for answers, but no one seemed to think that anything was wrong. I knew otherwise. Some doctor visits amounted to no answers, so I pushed to go see a neurologist. I really thought maybe, just maybe he had a mild CP.

After an appointment at CHOP with a neurologist, we left being told that he didn’t need an MRI, that he just had a developmental delay.

I refused to settle for that answer, and made and appointment at DuPont.

Summer was over and we went to see the young neurologist at DuPont. She did a good exam, but ultimately said he did not need an MRI. I looked at her and disagreed in the nicest way. She only later told us that the only reason she agreed was because she saw something in me, and believed in that moment that she would trust my feeling. We scheduled the MRI for Sept 20th and we waited.

On this night 11 years ago, when we were going to sleep, I was uneasy, and I remember Hut and I talking wondering if we would find anything out tomorrow. We just wanted to know, no matter what.

I had a dream…

There was a cross made of light and words. Actually the words made the cross. Words that I knew meant something, very personal to my beliefs, and words that made me realize that I would have nothing but my faith going into this MRI. I knew in my soul that our lives were going to change, but I could never have imagined how much!

We may have had an idea something was going on, but no amount of questionable sac races, tremors, “he’s ok” conversations, could have EVER prepared us for what was waiting for us when we walked through that hospital door on Sept 20th.

Posted in Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, the ride of my life
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