Tonight At 11:30 Eli texted me from his room to tell me he didn’t want to go back to school on Monday. So, Instead of texting him back, I went down to talk with him. I don’t think I have him convinced to finish the last week quite yet, but in true Eli fashion, he changed the subject quickly and moved on to me reading to him.
He picked up his Bible and asked me to read anywhere I wanted. I said how about we just open it up and wherever we land we will read there. He was in agreement, so I laid down with him and flipped it open.
As soon as I saw where we picked, I had to wonder why this would be the story that we would land on tonight.
If you know me, you know I struggle with watching these kids being challenged to do every day things. You know the pain in my heart not being able to help them, as I have always worn it on my sleeve. I have shared my faith and my fears, my joy and my tears. Through it all, I have always tried to believe in a greater purpose for this journey we are on.
As I laid down next to him and started reading, he started to weep as I read.
Luke 13:10-17
“She had been bent double for eighteen years and was unable to stand up straight. When Jesus saw her, he called her over and said, “Dear woman, you are healed of your sickness!” Then he touched her, and instantly she could stand straight.”
How he said? And why? Why not me??? I believe he said!
Of course it was a story of a disabled woman being healed right?!! We couldn’t have opened it any other place in the whole Bible!
He cried a bit and then we sat there and talked. I know his heart, and I know his love for God, but I DO NOT KNOW WHY he is disabled, or why he can’t be healed. I just said sometimes believing simply isn’t enough, but we can choose to believe that God has other plans for you even if healing isn’t part of those plans.
I’m sure I will die someday with these questions left unanswered and my heart will probably never be ok, but that is ok. It has to be, because there is no other choice.
So we go on, we move along, change the subject, find something to smile or laugh about and know that tomorrow is a new day. Maybe filled with the same questions and answers but maybe not.
We did make it through the moment without me fully answering him, but the beautiful thing was, he seemed to get it. He understood that I simply can’t answer the question about why him believing “like God said” isn’t enough… no one can.
I’m so grateful for his love for Jesus, and his faith, because in moments like these, HIS believing is enough to carry us both through.
It seems like yesterday when Hut and I sat up in bed till 3 am, looking at each other, talking and wondering if we would ever laugh again. The house was quiet, the kids were asleep, not understanding the gravity of what unfolded earlier in the day. Hell, we couldn’t even fully process it yet! We went into survival mode that night, not knowing where the road ahead would lead us, yet here we are, almost 12 years later, a moment captured in time. A culmination of years of wonder and worry, joy and pain. However through it all, we carried with us the steadfast belief that we would be sitting here, just like this one day, celebrating the fact that Eli got to live… that we ALL got to live to see this day!
V is a long way to wait in the alphabet at graduation and although I knew it would happen, the anticipation of hearing his name called was like watching the second hand on the clock slowly tick by. Not to mention the thought of not hearing his name thanks to the insensitive people who brought airhorns and blasted them every few kids, blocking some kids names from being heard. After all these years of waiting, I think I would have been escorted out of there if I could not hear his name due to airhorns! Thank God that didn’t happen!
As I saw Mr. Kinch get up with him to get him ready for his turn, I could feel my heart beat faster! The emotion started to well up in my body and somehow I became hyper aware. I could see nothing but him and hear nothing but my own thoughts of gratitude and thanks!
We watched him eagerly walk up to the stage as they called Elijah Thomas Vivian. Hut and I could see his smile as he walked across the stage and down the ramp for a quick picture. As he walked back to his seat, I could feel a weight lift. Suddenly I felt lighter, my shoulders less tense, and as I turned to Hut with tears silently streaming down my face, I knew we were both thinking the same thing… WE DID IT!!!
For the next few minutes we embraced, with tears rolling down our faces, knowing that a moment we had hoped and prayed for, had come to fruition. Thanks to Jenn McVey who was sitting behind us, the moment was captured perfectly!
Every sacrifice made, the separation of our family, every tear shed to get us to this moment. We turned our “mess” into a message! A message of preserving through some of the darkest days, never giving up and making the most out of the moments we are gifted together! 🎓🙏🏼💙💛
The school year is quickly coming to an end and soon we will get to witness the greatest gift, as Eli walks across that stage to get his diploma.
It’s a dream we only imagined after hearing “terminal illness” Eleven and a half years ago.
Watching how far Eli has come in those years had been nothing short of a miracle.
At the time of diagnosis, and not knowing what his future would hold, we didn’t like to think too far ahead. Now that we are IN that future that we never knew we would see, we are still faced with challenges, they just look different.
Life is good, we make the most of it, but as we get ready for Eli’s surgery Tuesday, MLD comes back to the forefront of my mind.
This amazing young man of ours doesn’t want another surgery, he doesn’t quite understand why he has to get it, and now that he is an adult, he just has to trust us. He does a good job believing us, and knowing that we would never do anything unless it was necessary. Unfortunately, this is one of those necessary things. People who have MLD and have sludge or polyps in their gallbladder have a very high percentage that their gall bladder issues can turn cancerous. As my friend stated, it’s like a ticking time bomb and there is no need to wait any longer. Ei has had polyps for quite some time that they have been monitoring, and as much as I hate the idea of another surgery, it’s time.
I know it’s a “small” surgery, but every time your child goes under, is another moment that you are reminded of what brought you to this present moment.
I believe the surgery will go smoothly, and this hurdle will become just another bump in the road. I also know that this isn’t the end of surgeries for him, and possibly Ella. His back is getting worse, the pain is more now than ever, and his hips aren’t in the best position anymore.
My God, how can we contemplate all the things that may lie ahead? We can’t! We would lose hope, question our faith, and it could make us spiral if we continue to dwell on the unknown future.
We do have a choice on how we will face what lies ahead.
Once again, we will choose to follow the lead of Eli. He is trusting, so we will trust. He is living in the moment, so we will choose to focus on today only. His faith is unwavering, so we have no choice, but to follow his lead, and Live Like Eli!
I’m ready to lose my mind and this is on a good day!
I swear, I thought I had patience my whole life, until I started to recognize my behaviors when I drank. Of course this was exaggerated having two children that need my help for a majority of things.
It’s not easy being needed for so much, and it’s even harder when on the outside your child “looks” so typical. Of course at 15 and 18 you have certain expectations for your kids, but not knowing what they are capable of throws those expectations out the window… to a point.
I still have expectations, but they aren’t what they were, or are for Eric and Evan of course, which poses another set of issues in the house.
Today as I looked into Ella’s room, I could feel my frustration rise to the point that I had to step away. Sometimes that is all I can do before I open my mouth. It gives me time to breath, put myself in her shoes and know that what she does many times comes from a place of wanting to help.
When I went back in, I could see her look at me, knowing, or feeling like she messed up!
Now, before this happened today, her room had nothing on the floor, her desk was cleaned off and her clothes were in her hamper.
Today, thanks to not drinking anymore, I have a different type of clarity and patience. I can see things more for what they are and I am able to dig deeper and choose differently. There is rarely a time that I fly off the handle, and that could be the greatest gift to those in my life.
Before the start of the New Year, while I was working, I had someone come and sit with the kids. I had asked her if she could work with Ella on making sure her room was straightened up in case we went somewhere for New Years. I was hoping we could arrive home to a fresh house and clean rooms. They cleaned and before we left I made sure everything was perfect. This would make for a good way to start the year.
We talked a lot of New Year’s resolutions while in the car and things we all wanted for the new year. I spoke of becoming more minimalistic and keeping things organized and clean.
I assume Ella too wanted to do this, as when we got home she went right to her room. As I was doing laundry, I didn’t peek in on her for a bit, but when I did I wanted to scream. It was almost instantaneous that I saw her eyes well up, as she could see that I was in shock.
She decided to take everything off of her desk, everything out of drawers, and pull out stuffed animals, all to get more organized.
It only took a minute before I could sense that she was just trying to help. Even though everything was already clean and organized, I assume she had a vision and wanted to do her part to start the new year off on the best foot.
As it was almost dinner time, the old me would have probably went to the kitchen to pour a glass of wine. Of course that would have relaxed me a bit and made me feel like this wasn’t a big deal. I didn’t, but I DID dig deep and recognize that she was just trying to help, so I went in and spent the next hour re-organizing together. I put myself in her shoes and thought how I could make the most impact in this situation and it paid off. I don’t think I ever saw her so appreciative and seen for what she was trying to do!
I’m sure this won’t be the last time we go through this, but I do know that my patience in dealing with situations like this is much better than it ever was.
Thankfully I don’t need that anymore, and what made me even more grateful, was when I pulled up my memories on Facebook and saw this memory.
It was a picture that I took on a flight to see my dad. He was dying in Florida and I was going to see him with my brothers. Of course I hated flying so I could never make this trip without a glass or two of wine, and add on my dad was dying, this was just what I needed to relax.
What a great reminder of how far I have come dealing with things without picking up a drink.
Now, I still feel angry, sad and frustrated when challenging things come up, but I have tools to deal with those emotions.
Having patience is not always easy, and neither is choosing not to pick up a drink, but when I see Ella’s response to my compassion and understanding, I know there is nothing greater than her hug along with a thank you for helping her get things back in order!
As we are coming up on Ella’s 10 year gene therapy birthday, I can’t help but think of the gratitude I feel seeing the everyday joys that she gets to experience. One of the biggest the last two years has been going to the Spring-Ford basketball games and being a small part of this team.
Last week Ella went to a game with Hut and Eli. I did not go, so I wasn’t surprised when I got a pic of her at the game. What did surprise me is that she seemed to have Eli’s necklace on that Dan Peticca made him last year. I was shocked that Eli allowed her to wear the necklace, so I asked how that managed to happen. He responded that it was a brand new necklace, a bit more petite (if that’s possible) just for Ella. It brought tears to my eyes that he would make one for Ella as well, and as you can see, her smile tells a story of just how happy it made her.
That smile 💗
This Coach had a team building event at Top Golf recently, and of course Ella wanted to go and watch the boys. Much to my surprise, when we got there, she went right over to the girls who manage the team who had their own bay. They so kindly invited Ella into their bay to play with them.
As I went back and forth, (she didn’t want me to stay with her) I felt like I had a permanent smile on my face. Watching her with her peers and Eli take shots for coach Joe on this Friday night, felt so “normal”
They enjoyed their night so much and it felt so good to see them both so happy.
These are moments that we would never have been able to witness without treatment for MLD.
People may not realize how much kindness and inclusion can mean to someone, but I am here to say, it doesn’t just affect the person being included, it has ripple effects that can, and DO affect everyone in their circle.
While these men are great at coaching, what they are teaching them is much bigger than building good basketball players. They are also building young men to have compassion, empathy and understanding , which will undoubtedly be something they can carry with them way beyond their days of basketball.
Picture shortly before his surgery in 2022 and yes Dallas will always suck!!!
When I look at him, it’s so hard for me to see anything but his ever changing body. The body that is fighting so hard to keep up with his unstoppable spirit.
It’s so noticeable when he gets out of the shower. His scars from the surgery are evident from his toes to his groin, his back getting more crooked by the month (another surgery not far in our future for that) and his hands that he clenches more now then ever. It’s hard not to see it. Although I try often to express my gratitude for the opportunity of gene therapy, which has undoubtedly saved his life, the fact remains, that we have to sit back and watch his body change before our eyes without much we can do to stop it. It is excruciatingly painful.
The decision to let Eli have surgery almost two years ago, was one of the toughest decisions in my life. Hut was all in, Eli was all in, but it took me months to agree with them. Indecision, I find, is worse than making a wrong decision, because it eats you up, and is a thief of opportunity, so eventually I was also all in.
I had such high hopes for Eli, and what breaks my heart is, Eli had even higher hopes than I did.
He wanted to walk on his own, go up the Rocky steps without a walker, he wanted to play sports. Although much of what he dreamed, I knew probably would not happen, it didn’t matter, because he BELIEVED! He had the faith of a child, he believed God would answer his prayer and he saw himself doing things. These things alone are what helped me agree to the 8 straight hours of operations. HE BELIEVED!
I never wanted to not believe with him, and to be honest, his belief made me have hope, and also made me ponder the idea that miracles like this could still happen!
Our doctor, who saved their life, Dr. Biffi, the pioneer for gene therapy for MLD, was always there to answer any question I had, and she was always honest with her answers. So, when I emailed her about the possibility of the surgery for Eli, she responded with honesty. She responded that she thought it held great possibility, but it would be a lot on his body. She had worries, but they were never mine. I was more concerned about the nerves and him never walking again, while she was never concerned about that. She was worried about the muscles, the atrophy, being unable to bare weight for months and never get that muscle back. She is beyond intelligent, so her words weighed on me. Ultimately it was Eli who made the decision, so we went forward with the surgery.
For the last year I have spent more time than I care to admit dwelling on whether it was the right decision. I cry to Hut when I see him struggling, and I have screamed out to God when I see his legs bending back the way they used to be, knees knocking with every step because it’s just easier and quicker for him to walk the way his brain is used to walking. I didn’t know if I would ever forgive myself for not listening more to the real possibility that it just might not be what we had hoped. Maybe I did listen, but just wanted to believe in what Eli believed in… miracles.
As I opened up Facebook today and looked at the memories, I scrolled down and I saw one from four years ago. Immediately, I could hear my own words of comfort to myself as I realized that it was now ok to let go of some of that anger that I had at myself about his surgery. It saw a video of Eli walking, and as painful as it has been wondering if we made the right decision, it was even more painful watching the video.
We forget things sometimes, especially when its not in front of us every day, but when I saw the video, it all rushed back to me. It wasn’t just his legs that were slowly becoming deformed, but it was his feet too. He walked on the side of his feet so bad that we used to wonder daily how he did it. Eli has been determined since birth and I assume that is the only way he continued… pure determination. Today I saw one of the reasons we allowed him to make that decision. Walking on the sides of his feet was simply not going to be sustainable for much longer. We had to take the chance, before there was no going back. Watching the video made me remember the daily pain that he had in his feet and legs with us wondering how much longer he could possibly do this.
Eli doesn’t suffer much from pain right now, which we are so grateful for. He gets angry and sad at the things he can’t do anymore, but we deal with that as it comes. He still has the never give up attitude and a spirit that continues to make us better people every day.
He knows one day he will be healed from this disease, even if it’s not while on earth, and his faith never waivers. He believes wholeheartedly in God and also still believes in miracles. I will never try to sway him any other way. His faith strengthens my faith, and I don’t know what I would do if he didn’t believe that this was all part of a greater purpose.
I hope after seeing this video today, I can feel that we DID provide him with the best opportunity for more time on his feet and more independence than he would have had without.
I hate this disease with a passion and I will never be ok, or never understand why, but now I can start to forgive myself, because making life or death and life changing decisions for your child is not something that I would wish on anyone. We are doing the best we can, one day at a time!
Resistance can be used to your advantage in many different ways if you recognize, and acknowledge your thoughts and feelings when there are things in your life that you want to change.
Our brains want to avoid pain, so we seek pleasure! Change can be painful at first, so we resist, even when we know it can ultimately lead to a greater strength and understanding in the long run.
I have spent much of my life resisting feelings and emotions, thinking that somehow if I pushed them away, they would disappear. This is not the best kind of resistance and the fact is, the old saying is true, “what we resist, persists”. Every time I have resisted or pushed away what I didn’t want to face, it continued to show up and it persisted to invade my thoughts time and time again.
Before long, weeks, months and even years can pass, yet it seems the same things keep showing up. The same thoughts weighing on me, with me responding the same way, resisting what the deepest part of me knew that I needed to change.
Resisting things, you can’t get out of your conscience is something to pay attention to. Resistance creates more pain for us… self-inflicted pain. It can serve a greater purpose though. Psychologically, we oppose change, because it’s easier to resist, than to actually change, however when we finally see this, and acknowledge it, we can find the strength to choose differently.
Resistance can be, and so often is, the catalyst for change.
For years I wanted to stop drinking. It was not serving me anymore, and although I wanted to change, I pushed those thoughtsanywhere else in my head just so I didn’t have to deal with what my soul was craving. The more I resisted the feelings that I had, the more they persisted, until I could no longer ignore them.
The day I changed what I resisted is the day my life changed.
When I got sick and tired of fighting with myself, along with everything I was trying to change, without doing the work (change takes work but no one will do it for you) my views changed. I no longer would push things away, but instead, found a way to surrender to what the core of me wanted, and learned to do hard things.
Change isn’t what is ultimately painful, it’s the resistance to change that is.
One day three years ago, I woke up and realized I wanted to resist the urge to drink, and from that day forward I have never looked back.
Now, it wasn’t easy, and many days were harder than I ever anticipated, but I stopped fighting myself. Once I did that, not only did my drinking stop, but so many other positive things happened.
Instead of resisting my thoughts and feelings, I resisted the urge to drink, to numb my sadness and grief with alcohol. I was finally open to change what I was refusing to look at for so long. I began resisting the things that were making me hate myself. This is where resisting can also be one of the greatest things that you can do for yourself and those you love, because others will benefit from your growth as well.
It might not be alcohol for you, but let me tell you this firsthand experience.
The power that comes with resistance, is compounded every single time you choose to resist something that is not serving you anymore.
Read that again, the truth in that statement is one of the most important things that I have learned in the last three years not picking up a drink. I cannot stress enough that it goes way beyond drinking.
Reacting – Resist reacting! So much to say about this, but just know that you don’t have to react how you always have. You will feel your power grow every time you choose not to react on emotion. Pause, breathe, reframe your thoughts.
Scrolling – We could all try to resist this once in a while.
Wasting time – Resist doing nothing (often that is) Get up early, read a book, write a letter, call a friend, meditate, volunteer, just resist wasting the precious time you have here with those you love.
Drinking (if this is for you) – resist the urge, you are strong and just for today you can choose not to.
Negativity – Resist it all! Don’t get sucked in
Fear – Turn fear into fuel for change and growth.
Resisting can be amazing when it’s used to grow. Today I can say that I am grateful for those years of resisting what my mind was telling me, because now I know I never want to go back to where I was in my head back then. I have gotten mentally tougher knowing that it IS POSSIBLE to resist the things that you thought you would never be able to.
The most important thing that everyone should practice resisting, is their own negative or limiting beliefs about what you can accomplish, because what you believe is generally what you will receive.
The quickly planned dinners, or the nights eating on the road, sometimes at the game have been a part of some of my fondest memories as a mom. As it happens with many of us, we might not recognize this, until those moments become memories from long ago.
I guess if you come from a family that plays sports, you just assume this will be a part of your life until your kids are living their own lives. We spent many years living the sports family life, but those sporting days came to an end a lot sooner than we anticipated due to MLD, and how it changed their body. Thankfully, we have been given another opportunity to revisit the joys of the game and it has brought so many enjoyable moments to our lives.
“Our” basketball season started a few weeks ago and Eli was ready! His Spring-Ford necklace hung patiently over the summer, waiting for this time of year, and it was the first thing he put on as we headed to the first game. That, along with his new team pull over, made him game ready! Seeing him so excited to get dressed and head out the door put a smile face that took me back to the exciting days of anticipating the boys games and the moments that would follow.
Seeing him on the “bench” watching the young men prepare for the game fills me with many emotions, but mostly joy. Eli lives in the moment, looking forward to every game, where he is present, eagerly awaiting the next high five as the players walk by him.
The home games bring another type of joy every single time I witness it. These young men holding Eli up for the Star Spangled Banner has brought many to feel things they might not be used to feeling. It’s a special moment to witness. Last year we had someone drive an hour to a game where he knew no one on either team just to witness the beauty of solidarity.
Every picture like this tells 1000 words!
I have wondered for years what the purpose is in all of this. The disease, the progression, the unanswered prayers and the course change of our life. These question that I ponder, will never be understood by my earthly mind, however, the moments like this along with others, no doubt have served a greater purpose that I will never doubt.
This team has also accepted Ella as a number one fan, and they know just how much the end of game knuckles means to her as well. She is right behind Eli every game, rooting every single one of them on.
This game, and this team has not only changed Eli’s life, but our whole family. It has given us all something to look forward to, and knowing that it brings a smile to Eli and Ella’s life is all that matters.
My wish is that one day these young men and coaches understand just how much their inclusivity has impacted Eli. Feeling valued and welcomed is one thing that we can all agree is important to everyone, and being a part of this team has made Eli feel just that!
As she got off the table, I could see in her eyes, that she was going to cry.
As we walked down the hall and out the door into the waiting room the floodgates opened. We took a break and sat down where Bluey was playing, and spent a few moments getting all the tears out. After the tears, came frustration and anger. “I hate hospitals” “I hate tests” “why do I even have to have MLD?”
Now, I can give her comfort during these times, as I hate all of these things too, and I also wish she didn’t have MLD, but I could never understand what goes on in her head when we have to get blood drawn or get testing done. Even putting myself in her shoes momentarily, I could never fully understand where all these “feelings” are coming from, but I can try.
We sat there talking, me more listening.
I have spent the last month or so broken about the things that come out of her mouth, Eli as well. Plenty of tears have been shed. Many down moments questioning everything, beating myself up at the things that I can’t make right for them.
This will never go away, and I have spent more time comparing myself to others in similar situations, which unfortunately just makes me more frustrated at myself. I should be grateful, happy or appreciate what I have. It could be so much worse and I know this. However, as Ella sat there crying to me, it hit me like a brick.
I am allowed to feel broken. I am entitled to be angry and sad at our circumstances. My daughter is sick of tests that will never end. She is tired of tripping, not being able to run, not having friends to do things with. She is sick of everything, but most of all, her body. Tired of what her body can’t do anymore.
We do remind her often of what she CAN do, but Hut is much better at this. He has this incredible ability, of getting her to focus on what she CAN do and also be a part of. I am grateful for this. I on the other hand am the one that is there when she needs to vent and cry about what is upsetting her.
Tonight we all individually have things that we can do, but we are choosing not to do any. We are going to watch Hallmark and play games together, snuggle or have hot chocolate and s’mores in the air fryer (they are just as amazing)
Ella has big dreams for her life, she wants to go away to college, have kids and get married. These are things I don’t like to think about too often as focusing on today only seems to be what works best.
I have tried for years to fix things but I can’t. I have tried to change things, but that can only go so far. For some reason, I think I am in control of everything and take responsibility for making their life good or not so good. That’s a lot to put on oneself, but thanks to some amazing women from a church that Eli and Ella go to, I am practicing surrendering. Something my dear cousin has tried helping me with for years, yet I always seem to end up where I started… thinking I can control everything, if I just do this or that.
Surrendering is scary, because you may feel out of control, giving up what you think should be, to accept what life actually is, is not easy. Letting go of what you think your life should look like is terrifying. Accepting what IS may seem as scary but it definitely brings more peace. I can honestly say I know this first hand. It’s not often that I am capable of letting go and surrendering, but when I do, a calm comes over me. The weighted blanket is lighter and things just seems to work out.
So tonight I am grateful for the small moments of surrendering. We cried and now we will find joy together and move on until the next tough moment arises.
I am so very proud of this young lady for sharing her feelings and not holding anything back. She moves on much quicker that way, not trying to push the thoughts and emotions away, but accepting them, spilling it all, acknowledging what we don’t like and what we can and can’t change. Of course on the way to school, a little Starbucks helps as well.
Ella wanted a pic of the sun coming up from chop today
A blanket of darkness follows me wherever I go, heavy and thick, trying to smother me with every breath I take.
I try to escape, but like quicksand, the more I fight it, the greater the hold it has on me.
The darkness is pressing, following me around every corner
I cry out to the universe, but who hears me? Anyone ?
The tears fall, some silent and some with a weeping sound that I barely recognize as my own.
Will it ever end I ask myself, or am I destined to be stuck in this body, where the mind is relentless at self sabotage
Will they say about me, “thankfully her suffering is over”? Is it that obvious, written all over my face, impossible to hide even from those who dare not look my way.
Maybe they too have the blanket, theirs possibly lighter, taken off with ease when it gets to be too heavy. I can only imagine.
Was I handpicked for this task of me against myself, questioning everything and trusting nothing. Spending countless hours, days and weeks learning how to run from it, eventually learning its impossible to outrun your thoughts.
I close my eyes, and before the slumber comes, somewhere deep inside of me I sense a light. A spark if you may, that still resides inside of me. Dying to ignite into something bigger.
Its there, waiting, wanting and yearning.
Who will win? The darkness that has been with me, planting its roots in firmly so long ago, or will the ember of the spark stay, patiently waiting for me to have enough of the darkness, that I finally choose the light.
Fear Not 