Fear Not

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
Tags: acceptance, blog, day by day, drew Barrymore, eli and ella, Eli and Ellas Prayer Warriors, finding gratitude, finding joy, GMA, God, good morning America, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, positive, positivity, rare disease, special needs, strength, today show, warriors, writing

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)

We would be honest from the start, with Eric, Evan, and Eli, even Ella to a point.
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.

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.

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.

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
Tags: CHOP, clinical trial, day by day, drew Barrymore, DuPont, eli and ella, Eli and Ellas Prayer Warriors, every day heroes, Fear, finding answers, gene therapy, God, hope, journey, life, Love, metachromatic leukodystrophy, MLD, neurologist, never give up, rare disease, special needs, strength, terminal illness, the today show, trusting your intuition, warriors

A moment we had only HOPED we would see

•August 31, 2023 • 1 Comment

It’s ironic because in 20 days we will “celebrate” D day. Celebrate because Eli and Ella are here living their best life possible. September starts Leukodystrophy awareness month, and it’s the month that we first heard the dreadful words Metachromatic Leukodystrophy. This moment I have to say, is the best way to start the month. Seeing our son on this stage smiling for his senior pictures.

Almost 11 years ago we walked into a hospital for an MRI, never imagining that when we walked out, our life would NEVER be the same.

That night of diagnosis, after trying to remember everything that the doctor told us, we went to bed in silence, looking at each other wondering what to say. We never thought we would ever smile or laugh again, let alone sleep through the night.

The most important thing we (thought) we knew, was that we were faced with the fact that there were no real treatments for MLD and definitely no cure. She warned us that without a viable treatment, he would be lucky to see 13.

At 7 years of age we thought we might have 6 years left with Eli, if we were lucky.

A few days later, a chance encounter searching MLD, had me finding a video of Amazing Sam on you tube, who was almost Eli’s age and just diagnosed with MLD. From this video, I found Sam’s mom Jolene, who introduced me on Facebook to a mom who had two kids with MLD, one who recently finished treatment. Amy and her encouragement helped to change my belief about the doctors words that their was nothing we could do to save Eli (and soon enough Ella)

So, today as the tears flowed watching him sit for his senior photos, I couldn’t help but think of the people that played a part in this moment. So many to think of, and be grateful for.

So often, I am reminded of Eli singing while we were in the hospital about never giving up. This song will never leave me, and it has become the song about our journey… their journey. While I sat there today, I heard him in my mind, singing about never giving up, and closed my eyes at the miracle that I was witnessing.

11 years later and none of us ever gave up! We thank God every day for this gift of life!

Eli is never giving up and we won’t either !!

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, anxiety, challenge, changes, clinical trial, day by day, eli and ella, family, gene therapy, God, gratitude, hope, journey, joy, learning, lessons, life, Love, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, parenting special needs, parents magazine, rare disease, sadness, senior year, special needs, strength, thankful, today show, warriors

My wish for this school year

•August 27, 2023 • Leave a Comment

When a special needs parent thinks of the beginning of the school year, those thoughts can be filled with great anxiety, even more so then typically developing kid parents. Will my child make friends, will my child have anyone to sit with at lunch, will they get made fun of or get laughed at for something they say or do? These things can be normal worries, but for those of us with “special” kids, or kids that struggle with these things, it can be a very nerve wracking time of year. To hear that your child has had a good day or week, to hear that someone was kind, or didn’t laugh when they did something that was embarrassing, this has become my simple wish this year, not just for my kids but all kids.

Don’t just preach the golden rule, live it

Don’t expect your kids to be kind when you are a keyboard warrior talking about other people or making fun of people on social media.

Don’t talk about inclusion, but not teach your children how important it is to those that are NOT included.

Don’t think that just because others walk different, look different or aren’t on your level that they are not worthy of you, your kindness or friendship. (most special kids have gifts that can change your life if you welcome it)

A smile goes a long way to someone who doesn’t have many friends, so does a kind word.

It doesn’t cost anything to be kind.

If you are the planner for activities or spirit weeks at school, try not to pick things that can leave kids out who don’t have friends.

How about using the “buddies” at school a bit further, and have some sign up for lunch duty (for those that are alone) or other places where kids get left out.

My wish is to not hear about my kid or my friends kid sitting alone at lunch… how does that even happen?

I have so many wishes and hopes for this year (as I have every year) and I hope so many of them come to fruition. Funny thing is, they aren’t big, and they don’t take much, but I wonder how many of them will happen.

Please, if you are one of those keyboard warriors making fun of others, please stop.

Live in such a way that all the things you preach are not just words, follow them up with action, and teach your children to do the same.

There can be life benefits for those who choose to see beyond the disability of a child. Benefits that can help you or your child be more understanding of others, learn the power of compassion, and what truly matters. There is value in understanding others, no matter their differences.

I can’t express enough how hard it is to have special needs children. If you have never experienced the anguish of these simple wishes, count yourself lucky. One day it could be you, or someone you love, and then maybe you would understand how something so simple could change the life of a special needs child.

Thanks to Mr. Kinch for the great picture 😍

Posted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, buddies, challenge, changes, day by day, differences, eating lunch alone, eli and ella, Eli and Ellas Prayer Warriors, family, friends, friendship, God, golden rule, gratitude, hope, inclusion, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rare disease, special needs, special needs parenting, strength, warriors

Jesus take the wheel

•August 24, 2023 • Leave a Comment

Today I am reminded, just like every other day, that no matter how hard I want something to be different, I can’t wish it that way. I can’t use positive thoughts to make something better, like many think. Some days, when I am feeling like I just can’t control anything anymore, there is nothing to do but let go.

Today as I took the kids out, I couldn’t help but watch Ella walk. Like I have said before, it’s something you can’t help but look at. One foot, then another, her pink sneakers slowly hitting the ground harder than you can imagine. With each step, her toes on one foot barely miss clipping the other foot as she lifts her leg for each step. The anxiety watching every step takes over my body and I go to reach for her hand to give her a safety net as she pulls away.

She is 15, of course she doesn’t want to hold my hand, but it’s the only control I have trying to help her in case she trips. I pulled out my phone to take a short clip of how bad her feet are turning, so I can show the doctor to get ideas to help her. A few seconds in, the front of her feet clip one another, but thankfully she keeps going. It’s become a regular occurrence now unfortunately, even with new shoes, high tops, and of course the dreaded flip flops.

Today was no different than the last weeks have been.

Walking through the outlets this week, we made it about five minutes before the tripping started. The high tops, which were once the best shoes for her, now have become too heavy for her feet and they hit more often than not. After about the fifth time, the tears came, the eye makeup that she barely wears was streaming down her face. As she screamed out, all I could do was pull her close and hug her. I hugged her as she cried and screamed how much she hates herself. Screamed how much she hates her body and what “MLD” has done to her. A hug was all I had in me. I agreed with her and just told her how sorry I was. I wanted to disappear with her and make it all go away but it’s impossible.

I wiped her face, and grabbed her hand. She wasn’t happy but it was the only way I agreed to finish our outlet visit. After the next few clips of her sneakers, the anger and frustration became too much, and it was evident that it was time to go.

Her body is strong and she is fierce, but MLD doesn’t care… it doesn’t go away, or get better as some have asked. It will be here until I no longer am, and it has more control over her body than I care to admit.

When we were recently in Charleston visiting Eric, most days started good, but slowly her body tired. Walking somewhere was on the agenda every day, and although it may not have been far, it didn’t seem to matter much. One block was ok, but anything more than that and her hips would start to hurt. This in turn went to her legs hurting and of course her feet. The anger and frustration came next, which led to my anger and frustration building. It unfortunately affects everyone and before you know it, the day becomes about her struggles.

“At least Eli doesn’t have to walk” is something that she says more often now. Although it’s a sad statement and also can make us anger quickly, to her I believe it means, “ Eli doesn’t complain, because you are pushing him in a wheelchair, there is nothing for him to complain about.” I can now understand why some days she says she wishes she was in a wheelchair, no pushing her to do more, no sneakers crossing over and less uncomfortable.

People think gene therapy is the answer and tell me how lucky we are, but there is more to the story. Gene therapy is what I believe to be a cure, when you have no symptoms, unfortunately this was not OUR story. Now Eli AND Ella will be trapped in their less than perfect body AND mind. I am so sorry this is their story. Every day I am sorry!

I’m not sure what the future holds, but none of us do. What I do know is that I think it’s time to start letting go as best as I can. Jesus (for me) is the only way I can let go, and let him take over because I simply can’t keep fighting against a battle that I will never win.

FU MLD

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, Jesus, Jesus take the wheel, journey, learning, letting go, life, Love, metachromatic leukodystrophy, MLD, never give up, rare disease, sorrow, special needs, strength, warriors

As you lie sleeping

•July 7, 2023 • Leave a Comment

Relaxing, swimming, playing basketball in the pool and just being together, that was the gist of our Fourth of July this year. Waiting for the sun to set to enjoy the fireworks, knowing that it is a gift that we are all home together today. As the games and sun tired you out, along with the long week of emotions, as family gathered to wish you good luck on your new adventure, you took a break and laid down. A few minutes later I peeked over the sofa and you were peacefully sleeping. A tear came to my eyes and the peacefulness took me back in time, as you lie sleeping.

Time flies they say, and we all know it to be true. We do our best to savor the moments that will soon turn into memories. Good memories that were made from good moments. Some memories we don’t like to think about too often, or talk about, but they come from a place that lies deep within all of us, and affects us differently. Then, we have the core memories that seem to be made from the good, the bad, and also the unspoken; the moments that we could never fully express, because they could only be lived.

The funny thing about memories, is sometimes they feel like yesterday, and other times they feel like years ago. Today it was like a flashback to everything. I closed my eyes and in my minds eye, the man who was on the sofa right now, was suddenly the 10 month old drinking a bottle with his Eagles outfit on as we rooted on our Birds. The little boy I strapped to me, as I walked circles in the living room listening to Michael Buble trying to get him to go to sleep. The memories flooded me of endless readings of Goodnight Moon, pausing after each page waiting for him to say what was next. The overwhelming feeling of love that I had watching him learn and grow, under this roof we have remained under for his whole life… PRICELESS!!!

I felt like this flashback lasted forever but I’m sure it was only momentary. Looking at him, feeling sad that he had to grow up quicker than most, missing out on the “typical” teenage years, adjusting to his “new”relationship with Eli and Ella. Being thrust into becoming more resilient, more reliant on himself during the months and years where it should have been different. Somehow I have blamed myself for many of the things that changed in his life after that dreaded diagnosis day, but as my dad used to say “kids don’t come with instructions” and I’m sure as hell positive that parenting four kids, (two who are living with a disease such as MLD) didn’t come with instructions either.

Eric held it all together for years, he did good in school, had nice friends, graduated Spring-Ford making us proud. He continued his education at West Chester where he suffered a great loss of a dear friend, saw all the changes that were happening with Eli and still graduated from college on time! He somehow did it all, and always made us proud.

During Covid, he came home and did college remotely as to help protect Eli and Ella from getting sick. He knew what was best for our family, and didn’t complain. We had some amazing and memorable days, weeks and months together. Moments that have become part of my core memories that I will cherish forever, and I hope they have done the same for him.

I could go on and on about our son Eric, because there are so many things that I am proud of, but I will finish with the type of brother he is to Eli and Ella.

Branded with the title of a special needs sibling, must carry a lot of added weight. Possible Guilt of being healthy, feeling sad for them, maybe envy of all the time and attention they got. I’m sure many moments sucked! The list could go on because none of it has been easy, yet you would never know that with Eric. He has treated Eli and Ella as typically as he has treated Evan over the years. The wresting, video games, and wiffle ball games. The nicknames that we all have. (Eric is the best at picking nick names) Eric has treated them better than I could have ever hoped, and they surely are better people for having him as a brother.

As Eric is leaving Sunday to embark on a new chapter of his life, (Act 2 I will call it) he will be moving 11 hours away, and I can’t help but feel sad. He will be missed more than any of us could imagine at this moment. There is no good time to say farewell, but the joy of being able to watch him spread his wings, brings a smile to my face. Being proud of him for LIVING his life, is an understatement! LIVING is a gift that not everyone receives, and I hope and pray that he lives his life to the fullest. Somehow, I know he will!

The gift of him taking that nap on the sofa, has brought back to me so many memories to be thankful for, and I will draw on them in the upcoming days and weeks without him, thanking God for the gift of Eric!

It was never WHAT he did, but HOW he did it, that makes me the most proud!

“ I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be. “ – Robert Munch

Posted in Along the way, Diagnosed, Life after diagnosis, living, My journey
Tags: acceptance, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, Eric Vivian, Fear, first born son, gene therapy, God, gratitude, growing up, hope, journey, joy, learning, leaving home, let them go, life, Love, memories, metachromatic leukodystrophy, MLD, moving, never give up, sadness, sibling, sorrow, special needs, special needs sibling, starting anew, strength, the Vivian family, warriors

My (2) greatest accomplishments

•June 24, 2023 • Leave a Comment

I have been a mom for 24 years now and for most of those years I have believed that being their mom was my greatest accomplishment. The dream of becoming a mom was something that I envisioned for a long time before they were born. The love that I had to share with a child, my child, that would always be a part of me, was something that no one could take away. I have been blessed.

Life happens, things change… those things then change YOU! After Eli and Ella were diagnosed, I changed. How could I not? The woman who was 39 at the time of diagnosis would soon turn 48 and wonder where that carefree woman was before diagnosis. How did these last few years pass in a blink with me just “existing”, or not FEELING? The only answer I had was ME!

Simply existing had to stop, and next week, on July 4, it will be two and a half years celebrating a different kind of life lived. The cessation of using using alcohol to cope with my feelings, my sorrow and my sadness.

Some people would say that they drank what I drank. A few glasses of wine at night, maybe more on the weekend. It’s a common thing. Have a glass of wine on a lunch date, maybe another while you are making dinner. It’s easy to finish a small bottle in a day. No big deal right? A lot of people do it right? It may have taken me a while to learn and accept, but it’s not about anyone else but ME!

The early morning 3 am rousing from sleep because alcohol refused to let me sleep through the night, the promises to myself that tomorrow would be different… until it wasn’t. The scary thoughts that ran through my head during those middle of the night minutes that eventually turned into hours. The fears that I wouldn’t make it much longer if I kept on this path. The pain that the glass or two of wine helped mask, soon escalated and eventually nothing would stop the inner critic telling me that “I suck” “you will never change” “the pain will never go away” “you deserve this” “it’s not worth it.” I could write a book about these 3 am thoughts! The thoughts would then linger in my head during the day. The intrusiveness was so evident, and life altering that it was hard to stop. It started to become a regular game that I would play with myself. Putting a smile on my face, but underneath I was slowly dying. Wondering how long I could go on like this.

Personally, I never hit a “rock bottom” or had that defining moment to say “What the hell are you doing ?” For me it was never about getting a DUI, drinking in the morning or drinking and driving, because I never did those things. For me it was what alcohol did TO me when no one was looking.

It’s hard to change, but it’s necessary for growth. No one said it would be easy, and I know firsthand that life is not easy. To quit numbing my sorrow was hard. FEELING is hard! So many emotions to deal with, but soon I would grow to be proud of how far I had come and my newfound freedom from alcohol would slowly become my greatest accomplishment. My superpower!

Two and a half years without stuffing my feelings so deep inside like they didn’t exist. Yes, I am proud of me and it’s a great feat, especially in a world where alcohol is a part of everything we do, but I am not here to judge anyone or their journey. I am grateful to have changed, but the pain and sorrow are still there. In fact, maybe more so now they seem to be front and center. There is no hiding it anymore. I fight through many sad moments but, I cherish every day and thank God for his protection and lessons along the way.

Today when I wake up and the inner critics voice is getting softer, I can’t help but acknowledge that not giving up or giving in when you want nothing more than that, is the most beautiful gift you can give yourself and those that love you.

Not numbing with alcohol has changed me! I never imagined getting stronger, but stronger I am, every single day that I choose not to drink.

I know that I am not alone, but most people don’t like to talk about it. I am NOT most people. I have shared since the beginning of this journey and it helps me stay accountable.

As a new part of my journey will be starting soon as Eric moves away to start his own life, I can’t help but think of all the time we have had the last two and a half years. All the nights where we stayed up playing games, laughing, watching tv and just being present. I may have had all these incredible moments with my kids while I was still having my nightly wine, but I may have fallen asleep early, or forgotten what we talked about. I may have chosen to say things that could be hurtful, or I could have continued to choose to drink to not feel. I didn’t!

When I reflect on these months and now years, I am in awe of what I have accomplished. It has been HARD, but it has been so incredibly worth it!

Laying my head down to go to bed looks different these days. I can write or watch tv, I can stay up late and watch a movie or listen to a meditation. Regardless of what I do, I am living in the moment, and know that nothing will take away this feeling of accomplishment!

“I understood myself only after I destroyed myself. And only in the process of fixing myself, did I know who I really was “ – Sade Andria Zabala

Posted in Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, accomplishments, alcohol free, being present, day by day, eli and ella, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, one day at a time, proud, rare disease, sober, sobriety, sorrow, special needs, strength, warriors

We are not different, we are unique

•June 22, 2023 • 2 Comments

The last week of school we were driving to school and Eli was expressing to Ella how different he felt compared to his peers. God bless Ella, and I can still see her little finger waving in the air as she stated to Eli “don’t ever call us different, MLD doesn’t make us different, we are UNIQUE!! “ Then she proceeded to shush him saying anything other then that the rest of the ride. I was so proud of her and drove to school quietly with a smile across my face.

Ella recently went to Dorney Park on her end of the year 8th grade field trip. I met her and her small group there to spend the day together. As we started deciding what rides were first, we saw many of the 8th graders running around with their friends as we stayed with Ella’s learning support friends/class. It was a day that started with me wondering if she would want to be with her other peers that she saw freely running from ride to ride, to a day of me being so incredibly thankful to have been with the group we were with.

If you have never witnessed complete freedom in a 13-15 year old child you are missing out. Freedom from what they look like, who they are hanging out with, and freedom to be just who they are. This was my most favorite part of the day, watching these kids do things with no wonder or worry about what anyone else thought. They played in the water together like a bunch of kids without a worry. Went on rides together supporting and encouraging their classmates. They are accepted for who they are and it showed that day! No judgement! Another moment that will stand out, was watching the teachers with them. You rarely get to see the side of teachers that we saw that day, but we were lucky and were able to see their joy in helping the kids, going on the rides with them and also seeing a guard lowered, because that is what these special kids do! They help turn you into the best version of yourself if you allow them! That is what I witnessed!

So today, in an email, the school sent out pictures that were taken at the Jr. Prom. There were quite a few good ones of Eli with his friends. They gave me the biggest smile looking at him on the dance floor with no reservations or worry about what others thought. He clearly was just living in the moment, enjoying his Prom. No worries, as Eli would say.

They will always be unique as Ella put it, and I believe through their uniqueness they will continue to teach lessons about life, and love to those they have the pleasure of crossing paths with in this lifetime.

I hope that everyone gets the chance to befriend someone special or unique, and see their differences as a gift, realizing there can be so much to learn, and so many smiles waiting for you if you are only open to it.

I will never forget reading this quote from Dr. Frank Oski in a book called Parting Visions years before the kids were diagnosed. This is just part of the quote but it has always stayed with me… even more so the last eleven years.

As a medical student Oski was enthusiastic about the potential of modern medicine, but frustrated by the fact that children die of congenital defects that are beyond anyone’s control. One night he went to bed pondering the fate of a dying patient. Although he was doing his best, the child was not improving. He felt powerless to help and went to sleep wondering why this child had to die. About an hour after falling asleep Oski was awakened by a bright light, one that shone in his room like a private sun. Oski could make out the form of a woman in the glow of the intense light. She had wings on her back and was approximately twenty years old.

In a quiet and reassuring voice the woman explained to the speechless Oski why it was that children had to die: “The angel (I don’t know what else to call her) said that life is an endless cycle of improvements and that humans are not perfect yet. She said that most people have this secret revealed to them when they die, but that handicapped children often know this and endure their problems without complaining because they know that their burdens will pass. Some of these children, she said, have even been given the challenge of teaching the rest of us how to love. It stretches our own humanity to love a child who is less than perfect,” said the angel. “And that is an important lesson for us.”

I will choose to believe that this is just a part of their purpose here, and I believe that they are fulfilling that purpose in all that they do! Being UNIQUE every single day!!

“What sets you apart can sometimes feel like a burden, and it’s not. And a lot of the time, it’s what makes you great.” – Emma Stone

Posted in Diagnosed, Life after diagnosis, living
Tags: acceptance, angel, angels, changes, clinical trial, day by day, eli and ella, Enjoythemoment, family, friends, gene therapy, God, gratitude, happiness, healing, Hero, hope, journey, joy, learning, lessons, live, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, normalcy, purpose, rare disease, special needs, spiritual, strength, teaching, thankful, unique, warriors

Celebrating ten years post transplant thanks to gene therapy! Happy Re-Birthday Eli

•June 7, 2023 • Leave a Comment

If I close my eyes, I can be right back to the room, laying with Eli in bed trying to calm his anger and moodiness. I can see a team of people walking in through the double doors with a briefcase in hand. A briefcase that held a large syringe filled with Eli’s new cells. A syringe that would take less than an hour to slowly empty through Eli’s port. A pizza party ensued and then the waiting began.

I’m sure Hut and I both remember the day vividly, the day that we believed Eli’s life would be spared from succumbing to the horrific disease known as MLD. Sharing laughter and tears, but most of all gratitude!

I went to bed last night pondering on the last ten years and the gift that we have received with gene therapy. Every year hits me different and this one has me thinking not just about Eli but about Eric and Evan.

As I was with Ella at her field trip to Dorney Park yesterday, it hit me that this is how old Eric was, when Eli was diagnosed and went through treatment. 8th grade! Evan was in 6th. Some of the same teachers that Ella has, Eric had as well. I can only imagine how hard it was for them watching from afar as their brother then sister went through something that we couldn’t even comprehend.

Their lives were changed in so many ways when the kids were diagnosed and as I remember back to the day we shared with them about Eli’s MLD diagnosis. I remember thinking how in the world can these boys go living a “typical” life knowing that their brother might not have many years to live… then their sister also. As hard as it must have been, they have done an incredible job, and I believe Hut and I did an amazing job being honest with them about everything, living in the moment and teaching them that today is the only day that matters.

Thankfully over the last ten years we have been able to make numerous memories, watch them ALL grow up into wonderful human beings, and the best part has been watching them treat Eli like they did before MLD. Playing sports, wrestling with him and of course getting pissed off at him. (Come on Roman Reigns, can you please lose) They have NEVER felt sorry for him more than a handful of times in the last ten years, which makes me so proud!! I believe that they have learned so much about life… pain, grief, joy and most of all never giving up!! Thankfully, I believe all these lessons will be with them forever.

Today we celebrate Eli! We celebrate the scientists, doctors, nurses who have made this second chance at life a reality. We thank them all, along with our family, friends and community of supporters for lifting us up when we simply didn’t know how to keep going. One foot in front of the other, one day at a time… it’s the only way and it’s how we got where we are today, ten years later!!!

To Eric and Evan, there are no words to ever express how sorry we are for the ways that your life has changed, but we know one thing, and that is Eli would not be who he is today without YOU!!!

Ten years of not thinking about time, when at the beginning that is all we thought about. How much time do we have left with them? Thanks to gene therapy, we don’t think about time as much anymore, at least not in the way we did back then. Eli is now a senior! God willing, next year we will watch him walk across that stage and get his diploma! A day that we never imagined happening almost 11 years ago when he was diagnosed with MLD!!

Gene Therapy saves lives!

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
Tags: acceptance, Birthday, challenge, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, Hero, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, never give up, normalcy, one day at a time, rare disease, sibling love, sorrow, special needs, strength, warriors