As I reflect on Rare Disease Day, I hope you know that it’s not your fault.
To all of those who may have felt like I ever directed any anger at them over Eli and Ella not being included in something, it’s not your fault.
To those that had to hear me complain as we have felt left out of so many things over the years, it’s not your fault.
To Eric and Evan who have witnessed my sorrow and anger on more than one occasion, it’s not your fault.
To my family who has listened to me cry and vent about our life and the challenges we face daily, it’s not your fault.
I am so grateful for the support over the years, we have been covered in love in so many ways. This journey has been the most excruciating journey I could have ever imagined, and I know it’s not going to get better. Just know, that none of it is your fault.
Most importantly, I would like to remind myself and Hut that none of this is our fault. We were dealt a shitty hand and we are doing the best we can.
I have been so forgiving of anyone and everyone else in my life, yet somehow I haven’t been able to completely forgive myself for something that isn’t even my fault.
I will continue to work on loving myself as much as I do others, but if I ever made you feel like anything was your fault, it’s not. It’s a deep, indescribable pain that I am working through, and one day soon I hope I can truly believe that none of this is my fault.
We never imagined our world could ever be turned so upside down by a rare disease that we never heard of, but who does. We are not alone though, and even though it might not be a rare disease for you, it could be a divorce, cancer, or the death of a loved one.
We tend to live our life and never think certain things can happen to us, only other people.
I remember when I was 15, all I ever wanted was to be a mom. I had so many hopes and dreams of the life we would have and there was no reason to believe I couldn’t have that dream come true.
When Eli was diagnosed he was still pretty darn perfect and could still run and play baseball, he had friends, and enjoyed life, despite being such a challenging baby.
When Ella was diagnosed a few short weeks later, I wanted to die. I really couldn’t imagine the thought of losing two of our four kids. It was a deep and dark place for a very long time.
I would have my wine at night to numb my pain, because it worked… temporarily.
We fought for the trial even though many were against it. They thought we were crazy not to do a bone marrow transplant.
We spent many sleepless nights trying to figure out what we should do and how we can convince them to accept Eli and Ella in the trial.
We sent daily emails and videos to Italy hoping and believing that we would get our miracle.
When we found out they would be accepted, it was the best and scariest time of our life.
Separating our family for so long, the unknown treatment and side effects, the list goes on.
These moments will be etched in my brain forever and I will always wonder if we made the best decisions for them.
I never pictured the future of our life, because I couldn’t imagine what it would look like. It wasn’t just about Eli and Ella but Eric and Evan and Hut and I.
I continued to numb because that is the reality of not knowing how to feel what I felt. I didn’t want to feel it all.
The depression and anxiety got worse knowing we would have to do this again with Ella, however to most, my face told another story. A mom that was ok, getting by, and holding it together.
Inside I was dying.
I could not accept this as our reality and now almost 13 years later, it’s still hard.
The only difference now, is I make it through without numbing. Four years now living alcohol free, dealing with feelings as they come and go, knowing feelings aren’t facts.
Life is hard… every day! It doesn’t mean it’s not filled with joy, and we don’t laugh and have fun! We do, but it never isn’t challenging.
There are so many challenges that we face on on daily basis but there are a couple that are beyond overwhelming.
Eli and Ella’s memory is enough to break your heart.
They forget names, what we just talked about, that they will never drive or have kids, they forget that their friends are not the same anymore as the gap continues to grow due to their maturity. They forget how to get around in a place we have been many times. Many days it is like we live with two little people who have Alzheimer’s.
We hear these same unanswerable things every day:
When will I drive, when I have kids…when I move out…I want to go to college, I want to drive, I miss friends…why do I have this disease, why can’t I heal, why does my back hurt, why don’t my legs work, why do people stare at me, will I die from this?
It’s so overwhelming that sometimes Hut and I just have to look at each other and laugh because the alternative is not good!
MLD has completely changed our family,
My heart breaks more often than not for Eric and Evan and for Eli and Ella. Eric and Evan at least got the good me, the fun mom who did everything I could with them, lots and lots of fun memories. Now Eli and Ella might get get MORE of me but that doesn’t make it better. They get the stressed mom, the mom who cries easily, the burnt out caregiver mom! That is so unfair to them and I’m so sorry for that.
This is a scattered writing, but that’s how this life is. I could write for days about the changes that MLD brought to our lives because it is never ending. However there has been so much good as well and I will share that as well.
Life is hard, I know we are not alone on this journey and I understand other families suffer like this for other reasons, or other diseases.
I have always worn my heart on my sleeve about so many things and will probably continue to do so. It’s who I am.
Maybe someone can learn compassion, can feel better knowing someone else went through something similar that I share about our life. Maybe all the sharing is just to keep ME going for one more day.
We really only have today anyway, doesn’t it feel good knowing you can be someone’s light in their life. We have had many that have shared their light with us, enough to pull us through some really hard times! For that I am beyond grateful!
It’s amazing how you can hate your life and absolutely love it at the same time!!! That’s me! Our life is simple, filled with forgiveness, love and ever growing acceptance that things don’t always turn out like you want them to, but when they don’t, I can promise you this, PEOPLE SHOW UP!!! It’s so beautiful!!! If you let them, strangers, friends, Family, teachers, FB friends, People show up and help you through!
I am so grateful for my vulnerability over the years because I know in sharing so much, that I, WE, are not alone!
Not but a month later we would hear the words MLD and our life would never be the same
Its easy to be the victim when your life feels like it is falling apart, and the longer your life is in disarray, the easier it is to stay where it is comfortable.
I never thought of myself as a victim, I just believed that I always had a reason or a right to be sad, or angry and feel sorry for myself. I have spent years struggling to find my way out of the depths of darkness that have been tethered to me like my shadow.
I have tried medicine and therapy, I have researched brain mapping, microdosing, electric stimulation. I have written endlessly about my pain, I have prayed and read everything I could get my hands on about dealing with anxiety, depression and how to not burn out being a special needs parent. In my worst of days, I have thought about not wanting to be here anymore, because I couldn’t imagine spending the rest of my life in an emotional prison, with no way out. It hasn’t been pretty; however, I have always believed that something could be on the horizon. I couldn’t quit in case the breakthrough was coming.
I am grateful that in some of my darkest times, something or someone always showed up, making me believe in myself, that I could continue to climb out “just one more time”
No matter what my marriage has been through (its been a lot), Hut has always been a source of strength, helping to remind me of how far I have come and how our kids could not have hand picked a better mother than what they have in me. Every moment I have come to him saying I don’t know how much more I can handle, he would remind me of my track record, dust me off and send me back in to battle. No matter what “our ” life has looked like, he has always supported any and every idea that I had to try and help me change my life.
When I came to him a few months ago, telling him I wanted to go to a meditation retreat, he was all in. The day Eli and I were awarded the grant came as I was battling the quicksand once again, and it truly was an answer to every prayer, cry and beg that I have expressed.
I remember when he asked what I had hoped to get out of the retreat for Eli and me before we left. I saw it in his eyes, he didn’t want my expectations to be too high, for either one of us, however he was very happy and seeing me excited and happy, made him feel even better.
I didn’t know if I could even picture me living another life, a life not in survival, where my thoughts were filled with wishes for a better tomorrow. Thankfully, I don’t have to wish for that life anymore. My life is not what is once was, and I am filled with gratitude every day for not living as a victim anymore.
I never expected that things could turn around as quickly as they did, but as we know, life can turn on a dime for the negative, so why not the positive?!
It’s so beautiful to live a life where I am now waiting for the next good thing to happen instead of hoping for another day to figure a way out of the darkness.
It’s not my place to tell you what to do to help you out, but I can only show you through my actions. It’s said that actions speak louder than words and I will let my actions in life speak, proving there IS a way out… a new way of living.
What would love do? It’s a powerful thing to ask yourself, and an even more powerful way to live. 🫶
I have to say, I am so grateful this kid is so open to learning new things. And as he seems me excited, he becomes even more excited.
When you have a rare disease such as MLD, there isn’t much you can do except medication to help any pain or muscle discomfort, maybe some PT to keep them strong and agile and of course prayer.
For those that know Eli, they know that he believes!! Believes in God more than anyone I know, and he believes that he can be healed.
Now, I would never give him false hope that he will be running races or driving, but he believes that he can do anything. So much so that he asks often why God won’t heal him since his faith is so strong. I don’t have the answer to this so I normally just say that we don’t know what God’s plan is. I explain to him that he is teaching people more in his disabled body than he might have been able to teach without having MLD. I don’t know the answers, but as much as he teaches me, I too try, and teach him to continue to keep the faith and be patient. He does just that, and we we continue to learn from each other.
Tonight was our first meditation and he was eager to start. We listened to a shorter Joe meditation that we found on you tube as we laid in his bed with the lights off. He fell into the motions pretty easily and I could hear him breathing just as he was instructed. The half hour went quick and I let him lay there to contemplate what he needed to before I went up to bed.
The benefits I noticed on night one:
I immediately noticed that he didn’t go for his phone after we were finished
As I quietly went down to check on him a half an hour later he was asleep!
I would say day one was a success!! 🎉🎉🎉
I didn’t know what to expect on night one, but this was more than I could have hoped for!
Today is it normally a day filled with many emotions, both good and bad. When you have a diagnosis such as ours you tend to never forget the particulars of that day. Everything from what you were wearing, to every word out of the doctors mouth.
I typically try to be as positive as can on this day, trying to focus on good things and how many positive things have come into our life since diagnosis.
It’s hard though, and it stings when we think back to the day we heard MLD for the first time!
Today though, I now have another reason to remember this day. Today on Sept 20, 2024 I got an email accepting Eli and I into a Joe Dispenza retreat in Orlando Florida in Oct!
I have been following Joe for many years but not putting in the work as much as I should have been. I have talked to the kids about him and his meditations, but we have never done any meditations together. That will change now as we want to prepare as best as possible for the retreat.
There is not much as parents that we can do for Eli and Ella when it comes to MLD, so I have been looking at his retreats for some time believing some day we would make it there!
Thanks to my friend Kristin, who reached out on FB a year ago, I started working with her on my own meditations. Fast forward to about two months ago and my dear friend Christie told me about an organization that gives grants for his retreats. Give to Give.
Of course we applied as soon as it opened for the Orlando retreat and we waited. Every day I checked my email hoping and praying we would get picked. After three weeks went by, I looked up to God and just said “if you want us there, we will be there, but I have to let go and surrender” it was one of the first times in my life that I truly surrendered. I didn’t realize how good it actually feels to let go!!!
Another two weeks went by and last Friday, I opened my phone and saw the email that Eli was accepted!!! I will go as his caregiver!!
The tears were streaming down my face and I immediately texted Christie and Kristin to let them know! Two seconds later my FT rang and the the three of us were celebrating together! The joy that they expressed for Eli and I was palpable!
My hope is that this can help all of us in some way form or fashion
I am beyond grateful,
Special thanks to Christie and Kristin and of course Give to Give for choosing Eli 💙
She is strong and fierce, she tries as hard as she can in all that she does, but she gets it and she gets what could be coming! Unfortunately I wish she didn’t, but she does.
Ella and Chooch 🐾
I hear it from her teachers and aides, what a sweet girl she is and how much she enjoys helping others like herself. I’m so proud of her and wanting to help others. However, there is another side to her that only comes out when she knows she is free to say what she feels. Yesterday was one of those days.
As I picked the kids up from school, and they got in the car, everything seemed as normal as every other day, until the door shut. I could see the tired written all over her face and I knew her body felt it as well.
I asked her if she was ok and I was not expecting her response. Eli had been in the front seat as he beat her to the car this day, so as I turned around to wait for her answer, I could see the little mascara that she wears streaming down her face. This followed by the statement that she didn’t want to end up like Eli in a wheelchair. It was said with a force that I hadn’t heard in a while and I knew she was hurting, probably both physically and emotionally.
I digress to two weeks ago when we took them to the outlets to look for school clothes. We had been in maybe four stores so far, but as we went to go into Old Navy before grabbing a bite to eat, it only took about a minute before a young girl started staring at her. Now it wasn’t a little girl, but a girl about her age. I could see her watching her and the faces she was making, which I am sure was more of a curiosity then anything. Unfortunately Ella saw it too, and it was the first time that I not only saw sadness coming from her, but anger too! We immediately left the store with her angrily stating how much she hates her legs, hates her feet, hates her back pain and ankle pain, she hates MLD …we do too!! I tried the normal hugging and telling her I’m sorry, explaining that she has every right to feel this way, because it sucks! Her dad did as well, but this day nothing was working.
She may have a disability and may not be as “with it” as her peers, but she knows more than we give her credit for. She knows just how different she looks when she walks, and it is beyond hard to watch her recognize this.
When school started I knew it could go one way or another. It’s a big school and classes all over. We did the self guided tour and that was not a happy occasion, just a reminder of how she can’t walk like she wants to.
We pepped her up, explaining that staff and teachers know how to help, getting her to leave each class early, take the elevator, and then the big one “there is also a wheelchair she can use if she needs it”
Cherishing the joyful moments – this was one! Ella took her first class at Soul Beat with her dad, Holli, and with the best teacher, my friend Kristin!
Inside I am dying at the thought of that. Thoughts running rampant in my head.
We saved her! why is this happening? she can do it! She WILL do it! These bare the thoughts that were going through my head and also hashed out with Hut. So we encourage her that she can do anything! Take b your time we tell her, you won’t be late we say. The teachers know about your disability we remind her.
Then I wonder, is this for us, or for her. Do we not want to see what her NEEDS are, do we not want to ACCEPT what she might need to make it through the day. A lot of soul searching had to happen, and continues to happen about this subject. It’s no easy answer.
If we give in to the chair now, does it make it more likely that she will want to use it when she is tired in the future? Then I tell myself it’s only for when her ankles are hurting, or toward the end of the day when she is exhausted. The chatter in my brain never stops. How do we accept that if this is her fate?!
Obviously we would never deny Ella what she needs, but does she really need it, or can we just ask her to keep pushing through? I don’t know what the correct answer is, but I do know, that day at the outlets changed her.
She is more aware of her differences, more angry at her body and the disease, she is more likely to not want to walk much in front of people when we are out. It has been gut wrenching watching this unfold, her own realization that she too could some day be in a wheelchair like Eli.
Back to the day she expressed it…
“I don’t want to end up like Eli” she said, tears rolling down her face, kicking the back of Eli’s seat to get the frustration out. We calmly talked, and God bless Eli, he sat there listening to it all and we only revisited it later before bed to make sure he was ok with what transpired. As we talked, she expressed how bad her legs hurt, her ankles, how she hates her gym class because she walks too much, (I am working on this) Then the kicker, “I don’t want to end up like Eli, but it’s just so hard every day”
Talk about trying to hold your shit together, it was nearly impossible for me not to pull over, grab her and cry with her. She calmed down by the time we reached the house and I said we could talk more whenever she wanted. It’s unfortunate, but I don’t have any good answers, just a good ear.
Over the next day we talked a bit about a wheelchair and she asked if I would be mad if she used it. Of course not, I answered, but I wanted her to know that this disease is wicked and when you stop doing things, it can get worse quicker, her legs; both strength and endurance will be challenged.
I know she felt heard, as her dad and I listened and I hope she felt supported as well! As much as the idea breaks both Hut and I, we know that this is Ella’s journey and we want nothing more than to do what’s best for her.
Just another lesson of compassion, empathy, patience and endurance, because I don’t think we have learned enough yet! (I’m not a funny person like Hut, so I guess I should say that was sarcasm)
I don’t know what’s next for Ella pertaining to her walking, but we will continue taking it one day at a time and let her lead the way!
Living your life out loud, like I have been for the last 12 years has not always been easy. Filled with the good and bad, sharing more about our life than I ever imagined doing. Wearing my emotions on my sleeve is nothing new, so here you go.
This time of year, in this particular year is not easy. Our son will not be furthering his education, nor will he be going into the working class of people. He will not experience driving or packing up to go to college and he will never live without another adult. He will be headed back to Spring-Ford on Monday as a super senior, and he is not thrilled.
I’m not thrilled either. Of course I am grateful, but the gratitude comes with a host of other emotions as well. Watching his peers pack up and get settled into their new “homes” for the next four years is not easy. Although in true Eli fashion, he shared this morning that he is happy his buddies are going to college. He wishes he could go but he ended the conversation with “maybe someday.” I looked straight ahead as I was driving, and the tears silently streamed down my face. I will never say never!
Coming up on twelve years now of living with this monster MLD, and although that seems like a long time, to me it is a blink of an eye.
To me I still remember how smart he was, finished his math quickly, reading great at a young age, loved the girls and they loved him. He was good at all his sports that he liked to play and he had a personality that I knew would serve him well as he grew up!
Many people might not remember who he was before MLD but I will never forget. The dreams I had for him (just as I had for Eric and Evan) may have changed considerably, however they still hold a place in my heart, which I revisit once in a while. It does me no good, but it’s impossible to forget who he was before our life turned on a dime.
In my darkest moments, I cry out, wondering what the purpose is, why he can’t have a “typical” life, you know, the kind we all take for granted. I feel punished some days, clearly I must have done something wrong. I’m drowning in grief.
The logical side of me comes alive when it gets too deep or dark, reminding me that it’s just my inner critic (thanks Ash) lying to me. Wanting me to focus on all the bad things, and all the sorrow and sadness. But what if many of us have it wrong. Maybe I’m the lucky one, given a gift of raising these kids that know more about life then they could ever learn in school.
What if Eli and special kids like him, have been given the task of teaching people how to love, how to accept and to learn what’s really important during your dash. You know the dash… if you don’t, look it up, it’s a great poem.
I’m going to do what I do best, keep going, keep loving and keep learning from the best teachers out there… my kids!
Yes, we love the movie 50 First Dates, but I never imagined living it!
Although I though I knew a lot about the changes MLD would have on Eli and Ella, I could have never been prepared for the road this disease would lead us down.
Most days I feel like I am in a movie – yes, 50 first dates! Sometimes we joke about it, but when I’m alone, the laughs turn to tears.
My patience, has been tested daily, if not hourly. I do everything I can do to reply to the same questions, the same quotes and the same stories as gently as I can. I try to listen like it is the first time I have heard it, but realistically it has been the 50th or the 100th.
I am cognizant of how I react because I see it in them when someone says “I know” “you already told me”. I see the anger in Eli, or the look of defeat. I also see a sense of knowing, for a split second, that he knows he already said that. That hurts!
This has been going on for years with Eli, but I now see it in Ella, which is even hard to write. when she doesn’t recognize someone that she has known for a very long time, when she forgets what we did this morning, or last night, or where something belongs. Her frustration, knowing that it is her brain and the disease doing this to her. When she seems ok, it goes to Eli. The same stories of wrestling over and over, where he is going to go to college, getting married, having kids, names of friends, his friends from church (the adults) who he adores, the kids names from the basketball team, him wanting to just go be with God in heaven. This is NOT once in a while, it is every day and it is not what I ever anticipated.
Living with two of your children whose disease is mimicking Alzheimer’s has taken so much from me/us. Some days I feel worse now than I was during early diagnosis days, almost 12 years ago.
I want to scream, so I cry!
I want to lose my shit, so I cry!
I want to run away, so I cry!
All I can do is sit there and answer the same questions, listen to the same stories, and pray for continued patience and compassion to be the best caretaker for them.
I am sure MLD affects everyone differently and yes I have heard it before “be grateful your kids are here” however being a caregiver has taken so much of Becky, that I barely know who I am anymore.
I’m exhausted and not physically!
There is no answer, so I will keep going as much as I can. I love all my kids more than anything and wish I could change their life, but I can’t!
Please pray for continued patience and gentleness in how I take care of them. They can’t help any of this, and to see their frustration at how this disease has taken so much from them is indescribable.
I will never understand the whys of two of our kids having to face so many challenges, but I will always try to find the good and continue to share the joys and laughter that have also joined us along the way!
At least we are living an Adam Sandler movie 🥰
** There is an opportunity that might be coming up for Eli, but I need everyone that reads this to BELIEVE with me that he will get picked for this opportunity of a lifetime. It would change his life I believe. **
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! 🎓🙏🏼💙💛
Fear Not 