Treasured moments

•July 5, 2020 • Leave a Comment

Today was a day that I surely won’t forget for a long time.

Moments come and go, some make you laugh, cry, smile or just make you realize for whatever reason, you won’t forget that moment.

Eight years ago in September Eli and Ella were diagnosed with MLD and eight years ago in August we went on a wonderful vacation with great friends and great memories! One of the memories is the pic below

We went tubing and although Ella was 4 and Eli not quite 7 they did amazing and as you can tell by the smiles, they also had a wonderful time.

After diagnosis I didn’t think too much about this day but when we were around boats here and again, the reminders would come and I would wonder if they would be able to do this again.

Today thanks to our neighbors Jenn and Ron, we had that opportunity!

I went with Ella first, thinking she is strong and should be able to do this! We went up and down the river on the tube as it was being pulled by the jet ski and for some time I felt free… free from my thoughts and anxieties and I was simply in the moment. I have not felt this in a very long time and boy oh boy it will be something I cling to and cherish.

Next came Eli and I think we weren’t sure if one of the boys should go on the back of the ski to make sure we could get him when and if he fell off. I thought we would be fine so away we went. I was super nervous but after the first few seconds I could see the determination in him and the joy in his face. I knew he would hold on for the ride of his life!! We went up and down the river and I would ask him if he was ok and he would say “This is the most awesome day” I said do you want to stop? He said “NO, keep going”! Through the turns I thought for sure he might wipe out but as we spun around to the side he just laughed with his mouth wide open and said “come on mom, can’t you fall off?” I just smiled and thought what a wonderful day!!! As we were pulling in, I let go so he could ride in alone and he loved it!!!

For a few hours today I watched my kids ride up and down the river and the most beautiful thing about it was, they could ALL do it and ALL enjoy it! I can’t remember the last time we left the house and all four could do something together like this!!

My God, the gratitude I felt during those hours was simply something I can’t explain.

Thanks to MLD I have learned to cherish so much more than I probably would without such a diagnosis. I am grateful for that! Moments in life take on a different meaning and things that were once taken for granted are now looked at with a different set of eyes. Eyes that see the gift of today, the no guarantee of tomorrow and the ability to recognize the amazing things that can come from a life changing diagnosis!

The gift of struggle

•June 22, 2020 • 2 Comments

Tonight at dinner, I placed a small Gatorade in front of Eli. Most nights he can open it but some nights he struggles and someone will open it. Tonight as I watched him struggle, Eric went to open it and I asked him to stop… I told Eli to keep trying even though we could see his frustration building. He tried a few more times with all of us chiming in on how to turn the cap before Eric ended up doing it for him. As I watched, it reminded me of how I have always wanted to make things as easy as possible for him/them. It also reminded me of the lessons learned about how struggle can be good and even necessary for growth and change. I have learned that making life easier for someone is not always the best thing.

Sometimes when we look at a butterfly, we forget that it was once a caterpillar. We don’t think of the process that took place for it to become a butterfly. The little insect that we might not give much thought to stuffs itself with leaves until it forms a protective casing. It then transforms its body, eventually emerging as a butterfly. During this process there is a struggle… the butterfly as it gets stronger breaks through the chrysalis to his new life. If you helped the butterfly by breaking away the chrysalis to remove any struggle, it would defeat the purpose and the butterfly might not survive. The struggle in life is sometimes like this and as much as we want to make things easier, it is not always the best thing.

One day about a year ago I was in Wegmans and I had just walked in. I saw an elderly woman shuffling to the bathroom as she got off her scooter. I went to open the door for her and she looked at me and said “no thank you.” At first I felt embarrassed because I was just trying to help but then when I saw her a few minutes later in the produce aisle she looked at me and said ” I need to do things on my own so I can continue to open the door for myself. It’s hard but if I let people do it then I’m afraid I won’t be able to do it anymore.” I said “thank you for saying that as it is an incredible lesson for me to learn”. She smiled and scooted away.

This lesson was brought to the forefront of my mind tonight as Eli was trying to open his Gatorade. I have spent years trying to make not only Eli’s life but all my kids lives easier by lessening the struggles that come their way, by jumping in when I see anything remotely difficult coming their way. I used to equate easy to happy but the fact is that we NEED these struggles in our life, for without them we wouldn’t know what we were truly capable of.

Think of the movie Inside Out. If you haven’t seen it, it is all about emotions but it carries a deeper message. Joy is the main character (emotion) and she tries her hardest to prevent sadness from becoming a core memory for Riley (the young teenager in the movie.) as hard as she tries to stop sadness or struggle if you may from being a part of Riley’s life, she soon learns that there really can be no joy without some sadness. Struggle or sadness; is hard as it is challenging to witness some days… we may want to do everything we can to “fix” it or take it away but the fact is there are amazing things that can come from struggle or sadness.

Without Eli’s struggle he would not be where he is today… if we did everything to make his life “easier” I would imagine his disease would have progressed more than it has. It’s a challenge to put his clothes on, to get on the kitchen chair, to climb into the car and to open a Gatorade bottle but thanks to a lesson learned at Wegmans I now see those “struggles” as opportunities. Opportunities to grow, push and transform into a strength that would not be possible without the struggle!

“Where there is no struggle, there is no strength”

If tomorrow never comes

•February 8, 2020 • 2 Comments

These words can affect you greatly if you allow them. What would you do today if you knew there was no tomorrow? Would you change nothing… or maybe everything. Maybe you would wish for second chances to say things or do things that you didn’t do because you THOUGHT you had time.

Yesterday was a day of reflection for me and what has transpired in the last almost 40 days. Reflecting on the fact that as long as you wake up, you have another chance to choose differently, to be who you really want to be and you have another opportunity to LOVE.

Yesterday I woke feeling blessed to be here to see ERIC turn 21. I woke reminiscing about the last 21 years and all the joy that he has brought to our life. The gift of becoming a mother, the lessons learned and of course I also reflected on the things I wish I could have done differently. Through all of these thoughts the one thing I never questioned is “will he know how much I loved him?” I don’t think that will ever be a question that he will ever ask because I always laid it all out on the carpet with them. The good, bad and ugly were all present but those moments were also filled with love and gratitude at the gift of being their mom. There was never a moment I wished I had loved harder.

I imagined Eric might be a bit hungover when he woke up…I had hoped his friends kept him safe and were smart …thankfully they were. I wanted to see him, to hug him and tell him thank you for making me a mom and although I knew we would be seeing him for dinner, I also had plans for the morning. I had taken some time off of work so I texted Hailey to see what he would want to cure his hangover if he had one 😉 I went and got him Primo, Wawa ice water and red Gatorade and I did it all with a grateful heart. I pulled up to his house in West Chester and saw him long enough to pass off the goods, give him a kiss and then I was on my way home. What a gift to be able to see my son turn 21.

I want to say that I don’t think about not knowing if Eli and Ella will be around to celebrate turning 21 but that would be a lie… of course I do. I do and it’s a scary though but it also has been a teacher …it teaches me to love hard now… be present now … and enjoy NOW!

When we got home from dinner with ERIC we searched for a movie to watch and while there aren’t many comedies that we have not seen, we came across an Eddie Murphy movie that we had never even heard of. 1000 Words was the movie and it was NOT a typical Eddie Murphy movie. It was labeled a drama/comedy but it was filled with lessons that could teach us all a thing or two. It was deep and thought provoking about the words that come from our mouth and the effect they can have. The wasted moments where we don’t think but speak, the raw emotions of anger and seemingly unforgivable events that have transpired in our life but most importantly the words that we don’t take much time to think about before we allow them to come out of our mouth. If tomorrow never comes would we be ok with how we used our time and words today… if tomorrow never comes would they know how much we loved them? If the answer is no and you woke up today, then you have the opportunity to change this.

These question are just two of the reasons why I have not had a drink in 5 weeks. The way I see this life now after witnessing the fragility of life… watching friends say goodbye to their child they will never see on this earth again… it is simply unfathomable… it changes you. FOR ME, I want to use my time better, I want to use my words more carefully, I want to be fully present and I want to love as deeply as this life allows. That includes embracing the rock bottom places that I have been; for the time spent there/here has taught me more lessons than I could have ever learned on the mountaintop!

Happy 21st Birthday Eric! Thank you for making my dream of being a mom come true!!!

And so I write

•January 25, 2020 • Comments Off on And so I write

I watch from afar in admiration of so many special needs moms, so many friends; sad to say, who have lost children. I watch from afar and wonder how they do it every day with a smile, how they continue with joy in their heart and seemingly without the blanket of fear and sadness that seems to be smothering me. As I peek into a fraction of their life I try to capture any small clues of how they endure the life that has been placed on their shoulders…I still don’t have the answers but I am trying to live out the questions hoping the answers will come some day and until then I write.

From the beginning of this journey I felt strong and confident… I felt like nothing would stop me from fighting for these kids and I felt like I could handle it all. For so long it seemed to go according to plan and we powered through. Looking back, maybe it wasn’t quite as it seemed. Now, when I look in the mirror I seem to see someone different or maybe the same person but a deeper part of her. I see a woman who is letting the thoughts of the future taint her present moment and I see someone who is finding it very hard to move forward because she is stuck in the past or dreading the future. I see a woman who can barely sift through the remnants and the memories of who she once was. It’s hard to believe some days that this is the same woman and it’s shocking to see who I have slowly turned into.

As I was in therapy this week we talked about HOPE and what my hopes were for the future. I had a piece of paper in front of me with the numbers 1-10 written down. I was supposed to fill them up. As I looked at the blank lines on the paper, my response even shocked myself. ” I can’t really mention anything or write anything down” I said. Hope seems far away in the distant past … a memory of what I thought laid ahead. My Hope and continuous believing in something better, had slowly turned to fear and dread. Fear of losing that hope that I clung to for so long and dread of the future. I wondered if I could allow myself to believe in hope again.

We all have our own demons and many don’t talk about them. We fight through them in ways that are individual to us because of our own needs and desires. I have demons that have become a part of me, they are intertwined with almost every breath I take. They have become my worst enemy, they have taken me to the depths of despair and they have even made me question my very existence. They have ALSO helped propel me to fight harder, to try again and again and to dig deep to find even a sliver of the person that I know I was made to be that lives inside of me.

After my appointment and after I had some time to think, I realized that I can find and believe in HOPE again… no matter how small it might be. Truth be told, the demons that I am fighting; well they haven’t been easy to overcome, but I just realized that the day I started trying to overcome those demons, became a day with a glimmer of hope that I didn’t even recognize as such. It was a day believing that tomorrow could be better and it was a moment hoping that I could turn my mess into a message. A dream that that little sliver of hope could possibly turn into so much more .

So tonight I go to bed in admiration of myself for once. Not because I am not sad or fearful anymore, not because I found a way to push the hard feelings and emotions aside, but because I am allowing myself to believe in me as much as I believe in others. I am fighting an uphill battle every day but if I can finally learn to have as much compassion for myself as I do for others then maybe that will give me the strength and willpower to keep the possibility of HOPE alive.

It’s time to remember that when we wake up in the morning, We can choose to let go of what we did if we aren’t happy with it!! Every day is an opportunity to choose differently! May God give me the strength to never lose sight of the fact that where there is tomorrow, there is always hope somewhere…no matter how small.

The gift of conformity

•December 27, 2019 • 7 Comments

When I saw his knees yesterday as I was helping him in the shower I couldn’t help notice how large his kneecaps are and how they protrude out over his slender legs. The knobbiness is hard not to notice, along with the slight curve that is now starting going down his back. As he sits in the shower I see his toes and how they are growing now curved over the other ones, I see the bones of his collar bones on the top of his shoulder and how they protrude to a point where it looks like they could hurt you. The boys said he looks like a dinosaur. His hips stick out so far past his butt that it’s hard to look at without complete wonder of how he even stands for a moment. Sometimes I have to look away because the pain is so great that I just can’t stand it. Yet, he is perfect…he is happy and he is more complete than most of us. His body has no bearing on his spirit that is stronger and more beautiful than I could dream of.

I don’t know how parents of kids with disease like MLD do it. How can one watch their child who once had a perfect little functioning body slowly have that body change right in front of your eyes without being able to do anything about it. It is truly torturous.

After 7+ years, I still haven’t figured out how to accept what is happening… I haven’t figured out how to stop being sad at seeing the changes in their precious bodies and I still haven’t found a way to believe this is all part of some plan that will work together for goodness.

Maybe I am just more vocal than most, maybe I just can’t pretend anymore but God I wish my strength was like others. I wish I had half the strength that some people think I have. The truth is, I don’t. Seven years and I’m probably worse now than at diagnosis. Maybe because I HAD to be strong then… we had a long hard road ahead of us and now…Now it’s just living …which can be just as scary.

What comes next if not another way to stop this disease? Settling into life as we know it is what comes next. I’m learning that it’s not as simple as I had hoped. To simply live can be challenging… especially in a situation like ours because you tend to be waiting for the other foot to drop. You know the potential of what can be waiting around the corner and the anticipatory anxiety of that is not fun. My God! living should be easier than this. Maybe it is easier and I’m sure I’m right when I say that I am just complicating it. I am my own worst enemy…or my mind is…with the what if’s, the projecting and the idea of “what should be”

We recently got back from Milan and learned some things I can’t even write about or talk about because then it brings truth to it. I don’t want these kids to have to go through anything else. I don’t want to watch them go through anything else. When we barter with God sometimes we can forget the things we say. We forget some moments when we are down on our knees begging for help at any cost. I have had many of these moments the last 7 years. I was reminded in Rome when talking to a fellow MLD mom of the words I spoke 6 years ago when trying to save Ella’s life. The words spoken of what I would be ok with giving up to have the opportunity to save her and have her here alive. Words that seemed to haunt me as they seem so much more harsh now. I was glad to be taken back to that day of being willing to give up anything as it became a reminder just how lucky we truly are to be where we are today. It doesn’t mean the pain is not there, it just helps you make friends with it, because the pain would be much different and worse without the treatment she received.

When Eli went to get in the shower yesterday he fell and pushed the door shut with his back… I heard him call me and I came running only to find I couldn’t open the door because of him being against the door. Most people would be upset at this and at first he was, but then he scooted his little butt inch by inch until I could push the door open. He continued to scoot his butt as he talked about Jumanji while spewing movie lines until I got him in the shower. The pain lasted a few moments along with the frustration of not being able to get himself up but there was an acceptance that I could see in him… this was HIS life and he was living it as best as possible. The way he has been able to conform to his ever changing body and life is incredible.

May we all continue to conform to the changes that arise in our life and follow our own paths. If we do there is no doubt that we will be better people in the long run. Just another lesson these amazing kids have taught us on journey called life.

The pain of letting go

•October 27, 2019 • Comments Off on The pain of letting go

One day I had to realize that this journey we are on is not about me. It may have taken a long time, but the realization is finally happening and I am praying that healing comes with it.

Sometimes we tend to project our past onto our children… actually our past, present or our future. I imagine we do this because we want the best for our children. We want them to have more than we did, we want them to have it easier than we did and we believe somehow that we can make this happen. When we do that, it should equate to more happiness for all of us. I am slowly learning that this isn’t necessarily true and although history doesn’t ALWAYS repeat itself… sometimes it does and no matter how hard we fight it and wish it wasn’t happening, we have to step back and let it happen. With this acceptance the greatest growth can occur.

Growing up wasn’t easy for me… I never fit in…I went to over ten schools and never felt like I belonged anywhere. I was teased, bullied and hated school just like many kids do. This drove me to want the simplest of things as an adult and as a mother.

Even before I had children I had one or two goals for my life with them. The one most important would be that they would go to the same school their whole life. This was huge for me. I wanted them to know the same kids in their senior year that they did in kindergarten. They did and they still do. I would sometimes smile at this thought and what a wonderful feat this was to accomplish.

I believed this would take away much of the anguish that I went through growing up and if I could do that, a huge parenting goal of mine would be met!

I never realized that they could suffer the same issues no matter how happy and stable that I tried to make their life. I never thought in a million years that they would suffer friendship issues, bullying and being alone. I did everything I could to make this not happen but here history was … repeating itself right in front of my eyes. It didn’t matter how different our lives were growing up because they were suffering the same fate, yet for all different reasons.

I recognized my own suffering from day one growing up and it took a toll…I would have given anything to fit in, so when MLD started changing their life and I saw things happening that reminded me of my own life growing up I prayed things would change… that their life would not be filled with sadness. Being left out of parties…not having that “go to” friend, spending most weekends at home and barely any invites to hang with friends. It has become a very sad existence for me watching their life unfold without the “normalcies” that most kids have.

My pain has taken on a life of its own and it hasn’t been good. Sorrow and grief is a beast and if you let it, it will take over and destroy you. That is what has been happening to me. I know that nothing good will come of this if I keep on the same path that I have been on. I have slowly allowed this pain to move in and take over my life. It is how I wake and how I go to bed. It rules my mind every hour of the day and it is destroying me. It is my own doing and I am the only person that change this.

Friday was a turning point for me. Something happened after school that once again brought me to the depths of sadness and when I walked in after getting Eli off of the bus I started to cry. I realized in that minute that I would die if I kept allowing myself to let this sadness and grief rule my life. I know now how emotions can destroy you and I want to choose differently.

Hut sent me something a few months ago about writing and burning it to let it go. Immediately that came to mind and I went to write my thoughts on paper. It was simple and short but it was powerful to me. I got the fire starter and went to the fire pit. I took those sad and angry feelings and lit them on fire. I watched as they slowly turned into nothing but ashes and smoke. I promised myself that for the rest of the night I wouldn’t be sad or angry and I wouldn’t think about it…I would choose differently and hopefully this would slowly help me start my journey of healing.

When I walked in the door from the bus, Eli wasn’t sad like I was, he wasn’t hurting like I was and he wasn’t affected like I was. It was me … it was MY loss for him… it was MY sadness for him and it was MY anger at the disease and what it has robbed him of. It wasn’t him at all but it was all about me and my sadness for him about what I think should make him happy… what I think he is missing out on. He came in happy and went to play his game. That is when I knew I had to try harder. I would try to not let this grief continue to wreck havoc in every area of my life.

MLD has robbed them of so much it’s true BUT it has given us a gift along the way. It has protected them from their own grief. Eli doesn’t know what friends his age are doing and if he does it barely affects him… he is so happy being with us, watching movies and playing his games. Ella doesn’t realize how she might not fit in, how she doesn’t get invited to parties, how the phone never rings for her to come and play. She doesn’t realize that the people that have bullied her wouldn’t want to be her friend the next day. She simply forgets. She simply can’t see any bad in anyone. It’s a beautiful thing that MLD has given us…given them.

So my pain is not their pain… and once again this isn’t about me. I may be in unbearable pain some days at the things that I can’t fix and the things that I see happening in their world… BUT it’s not about me and they thankfully don’t see what I see. They thankfully are protected by a disease that is also slowly destroying them. It’s a sick and twisted reality.

I pray that I can continue this road of letting MY idea of their wonderful life go and accepting THEIR idea of their wonderful life.

Letting go of the pain, I’m finding is much harder than holding onto it, but they deserve more.

So here’s to the fire… the letting go of the pain and the hope that healing will come in time.

Dream a little dream

•June 26, 2019 • 2 Comments

I had a dream and that dream came true.

I remember as I was growing up that my biggest dream was to become a mom… a mom with children that would never wonder how much they were loved… a mom that would do anything for her children, but as I’m learning through this journey… I might not be that mom who can do EVERYTHING.

The scenery is starting to look familiar and I don’t like what I see. I can’t save them and this is the hardest truth I have ever had to face.

Ella… my one and only daughter and my prayer come true. Seeing the changes in her recently has been something that I never anticipated. The tired and quivering legs after her short bike ride, the shaking arms after helping me make a cake as she tries to hold the hand mixer… the changes are real and they were not there six months ago. My heart is heavy and hurting more than I ever imagined.

I watch her walk down the steps holding onto the railing, feet turning in more noticeably than ever before. I see her little hand tremor with intention and the uncertainty/frustration in her eyes with certain things that should come to her with ease. These things are simply too hard to ignore anymore. I can’t stop what is happening in their body and how MLD is changing their lives… changing OUR lives.

There are days that I wonder how one is supposed to withstand the pain of watching your child lose abilities. Watching them struggle with so many things yet all we can do is watch it unfold.

I cry out to God and all I hear is crickets.

I struggle with understanding… with watching them face the daily challenges that they come across. I have not said “why us” because life didn’t pick us to torture, life just happens. Genetics happen. I will die some day and never understand why these babies have to suffer… why they are being robbed from so much in this lifetime.

I don’t have an answer to the above statement but all I can say is this : It’s a good thing to cherish our days together a little more… to laugh harder and to know how precious life is.

Sharing these kids with the world has had its ups and downs but the love that has transpired because of it will never go away and for that we are so blessed.

💙❤️ Love this oldie but goodie

The desperate search for joy in pain

•January 16, 2019 • 7 Comments

Some days are hard … some moments are even harder.

Recently there have been moments that have changed me, moments that have brought me to my knees in sadness and even more moments that leave me searching daily for the joy amongst the pain.

I have spent too many month now heading into years comparing myself and my grief with other MLD moms. It has not served me well because they are all individual amazing women but I seem to forget we are all on our own journey. I keep my grief in my pocket sometimes because I have a lot of it but it’s not easy to hide some days. I also hear that my child is alive so I should be grateful… well no one has to tell me that. We are all blessed in this family and know it. Being blessed doesn’t automatically take away the pain that comes on a daily basis. I have to remember that this is OUR journey and no one else’s.

I really believed after so many years it would not be so hard … I would have more acceptance, but unfortunately I am brutally honest when I say that’s not how it is panning out. Acceptance is harder than I thought.

Ella is like a 7 year old in a 10 year old body… friendships are hard … more than you can imagine. She doesn’t have that go to that you always hoped for for your daughter … she is immature and just wants to play but it’s mostly not the kind of play kids her age want to do. I feel like she is just too eager and that is hard for girls her age to understand. She is the most loving girl but nothing comes easy for her and this “normalcy” some days can almost be harder than watching her go through GT. There I could protect her from disappointments, protect her from everything outside of our little box. There was no thoughts of sports or friends or what life would be like “after” Now here we are …This is life … a life we fought so hard for yet it will never be what we dreamed of because the disease is still there and it is still slowly changing her. It’s heartbreaking.

I ask God every day to help us and I feel at a loss many days. My faith is shaken to the core but I don’t want to give up on it. The girl I dreamed about (literally), the girl I dreamed of and the baby girl we were so excited for … why must her life be so challenging and why is there not much we can do about it? These are the questions and I ask often.

Eli is a whole other story. We see changes weekly now in him… his legs being the biggest one. I can hardly type this thinking of the phone conversation that I just had with his PT. She called to ask if we had a trip planned soon or visits to CHOP because she is concerned with his one leg/knee just going. He walks at an angle that seems to be impossible to most of us yet somehow he continues. How can we save his legs?! We can’t …. his hips are coming in more which makes his legs worse. Spasticity is becoming much worse and yet here I am sounding so selfish that I just pray that he can keep walking. I wanted to take him to Great Wolf Lodge before he can’t anymore and I am so angry at myself that we have not done it yet. I just keep thinking he will keep going but it’s not going to happen and I’m devastated. I really don’t need to hear “Becky he will be here even if he can’t walk”… I get it … but this is OUR son losing these abilities and you might feel the same. It’s not easy watching your child lose abilities right in front of your eyes.

The house will get railings soon both inside and out …I guess this is just the beginning of the changes that will need to be made. One step at a time to help him feel comfortable in his own home.

All I can really ask for is prayers. I have to believe that God knows the best things for them… from friendships, to their medical issues .So at this point we can only rely on God to send us in the right direction, send us the right people and guide us to make the best decision possible for them.

We will continue to find the joy in this pain because we always have. Some days are just harder than others. Some days it’s right in front of you and others you have to get out your searchlight. For now we will make sure we always have batteries for that searchlight because we don’t ever want to forget how lucky we really are… pain or no pain.

 

Hitting the reset button

•August 15, 2017 • 2 Comments

I have gotten more used to the unpredictability of life… the not knowing what tomorrow will bring and the idea of "trying " to live more in the moment. It's taught me some amazing lessons but it's also revealed some incredible anxieties within.

It's been a long time since diagnosis… almost five years, which seems so long that you almost forget your life "before". Somedays I welcome that forgetfulness because the pain of "before" can smother me like a blanket; making it hard to breathe or think of anything thing else. It's not healthy and thankfully I know that so it's not too often I allow it.

Today I needed to try to hit the reset button…

Life is overwhelming… Eric is leaving soon for college, the kids are struggling more and some days life just seems to be spinning out of control. The lack of control I seem to have lately is not a good thing, so today for one day or even for an hour I tried to let the lack of control go and I woke the kids and made them all go to church with me. Now of course nothing is that easy at 9 am on a Sunday morning when everyone wants to sleep, but my soul needed my church and I needed my lovely happy children with me. As I was determined to make it on time to get the kids in with their age group we pulled up and I was shocked that it seemed we were late. Well I find out that it must have been awhile since I have been there so now there are only two services on Sunday!! Great… so I make my happy kids wait 45 min with me and to pass time we get some munchkins (because breakfast was promised afterward so we don't want to eat too much). Anyway church was awesome … powerful message that we (Eric and I) needed to hear and Eli and Ella had a blast with their peers while Evan volunteered with the young ones. We went on to have our breakfast and I felt blessed.

During breakfast it was hard to not think About MLD and what it has done to these kids. Eli was so happy because the kids in his group played FIFA with him and per Eli "they were so nice mom… they helped me and they went easy on me this time" I think we heard the same sentence 50-100 times during the hour long breakfast. I don't think he said anything else and I could feel his joy with every word. The frustration builds in the other kids as they are tired of the story and they are annoyed at my overwhelming joy every time he tells me. (Picture 50 First Dates ; which I will add is one of Elis favorite movies) It has to be like the first time he told me. He has some major memory loss issues…sometimes I think just short term but when he still can't tell cousins apart I'm not sure. Ella on the other hand seems to have different issues that bring their own set of challenges. She is 9 going on 7… her temper is terrible… she goes from 0-100 in a few seconds. The envy she has of Eli is extremely apparent and also heartbreaking at times. She wants to be like him, she wants to be as challenged as him so maybe I will care more about her (in her words)

How does one balance life when it becomes so unpredictable? I do my best but it will never be enough… so what is there left to do but try to hit the reset button once in a while and just go with it!

Rare Disease Day

•February 28, 2017 • 2 Comments

Today is Rare Disease Day.

I read something today on a blog… it was a question asking what we would like someone to know about our rare disease. I find this a very hard question and almost impossible to answer. What could I want you to know when it’s still impossible for me to know everything I would like? What WOULD I want you to know about the rare disease MLD? It’s simple yet could never be understood…. MLD is life changing and that is the only way to put it.

Ella is getting older and wiser… she knows what’s coming now and it’s not always good. The day of her MRI they decided to give her a mask of laughing gas to put her to sleep then put the pic line in to save her from some extra pain. Although this sounded good, it proved otherwise. Ella fought me the whole way down to MRI and when we got there she continued her fight. As I sat down with her on the gurney while the doctors were waiting she was flailing and kicking me to the point I could barely hold her down. She ripped my earings out of my ears and could not control her fear or anger. I had to place my body across her and look away while they put the mask over her face. As she continued to scream until the gas set in, I layed on her lap sobbing almost uncontrollably. She finally fell asleep and I ran as quickly as I could for fresh air; wishing I could keep running away from it all! I hate you MLD. This is rare disease.

By Thursday last week the kids had two tests remaining … We walked down to the cardiologist and Ella hopped up on the table . She had to take off her shirt to get her exam and as she did I was taken back by her precious little body. The first thing I noticed was a bruise on her spine from her lumbar puncture… then I saw the (lead) sticker marks on her chest from her last EKG and EEG, both hands had bruises on them from the blood-work and  gall bladder MRI (where she needed contrast and she had another bruise by her hip from her bone marrow aspiration. Wow! My baby girl … looking like a human pin cushion and the sad thing is this has become so normal and accepted for them/us. This is rare disease.

Eli’s walking is getting worse . Some days it is like watching a train accident occurring in very slow motion. You watch and you know it’s so hard to see what’s happening but you can do NOTHING about it. Imagine that for one second … watching your child lose abilities in slow motion… watching them drag their foot or feet more and more… you can see the marks on their shoe that were never there before as proof that things are not the same but slowly changing. Thankfully the doctors in Italy are trying to figure out if we can do anything for Eli and his legs,  so they suggested a nerve conduction test. Just a few shocks 2-5  or as many as he could stand to help us get some answers. The doctors said it would be up to Eli so I pulled him aside to explain to him what they wanted to do. Eli said “ok mom I will do it”. We met the doctors down stairs and as they put the leads on him my heart started beating faster. My precious Eli is allowing them to shock him to see if he has any conduction in his nerves in his foot or leg. I layed across his body and told him exactly what they were doing. A moment later the first shock… he jumped and after a moment the doctor asked him if we could continue… he said yes. They went down his leg a bit and shocked him again. This one was a bit worse but after a brief rest he said they could go on. After the third or fourth shock he was crying very hard so he decided that would be the last one. Fortunately they got the information that they needed and Eli  would soon move on to a Yahtzee game with Mom-mom; seemingly forgetting about what just happened. Me on the other hand; it’s almost impossible to ever forget. This is rare disease.

They don’t have a “normal” life anymore… Boston and Milan aren’t even questioned …their bodies are violated with needles and testing and you can’t save them. You can’t even really explain it to them because YOU don’t even understand. You can’t explain why Eli can’t run anymore or why he can’t shoot the ball like His friends or why he will never play basketball like his brothers. You can’t explain why he can’t ride his bike or button his pants pr why EVERYTHING in life is just so much harder for him!! You can’t explain why Ella doesn’t want to play sports because she is not “good like her friends” or why she can’t roller skate or dance anymore…. why her numbers and letters are backwards. You can’t explain why she gets so frustrated every time her foot trips over the other one and why her hip hurts. You can’t explain why you want them to never ever give up because they don’t even see that as a possibility. They are fighters and they just keep going. All these things can’t be explained to them because they could never understand. I don’t even understand… except for the fact the MLD has slowly robbed them of things that I would give anything to get back… even for a day.

 

This is rare disease.
Life changing ….That is all that really needs to be known. Having a rare disease will change your life.