An army of kindness

•October 24, 2020 • Leave a Comment

Sometimes we don’t realize the gravity of a situation until it has passed. We might not see all the ins and outs or behind the “scene” work that it takes to make something come to fruition because life is quick and it passes us by all too often without much thought. We also may not realize how much something has affected us until we can take time to breathe and soak it all in. These last few days I have been able to soak in the effects of the incredible kindness that has been bestowed upon us the last month and it is truly humbling.

As a mom, hearing that Eli’s number one hero; his go to, who can make any bad day better would be filming not only in our area but in our own back yard I felt a mission that would soon take over my thoughts most of the days and nights ahead! A mission to do whatever I could to make a dream come true. I soon would learn that nothing like this could ever be done alone. It would take an army to make this dream come true and an army is exactly what showed up for us!!

From the first day I shared on FB about Adam Sandler I received an incredible response. Emails, phone calls and messages all saying how they knew someone who knew someone. My heart fluttered at the thought but didn’t want to get too high. Somehow NBC10 got ahold of the story and called me Friday night. At first I heard “hello Becky I am from NBC10 and would like to hear more about Eli and his love for Adam Sandler.” He asked me to email him and I quickly said of course. A few minutes later my phone rang again and this time he said, “instead we would like to do a Skype with you tonight is that ok?” I couldn’t believe it but said yes!! We had our Skype that night and although Eli seemed a bit nervous it was perfect. I shared the story the next day and within a few hours it had 200 shares on FB. I believed Adam would hear all about Eli if he hadn’t already.

By Sunday, Eli’s army was working full time on this and it was surreal. Imagine people that don’t even know you reaching out with possible connections that you never imagined. People that I haven’t talked to since high school willing to do so much to make this happen. People that have followed our journey from day one and those that have just heard about us…All working on One goal, to make Eli’s dream come true. People came out of the woodworks, others took it upon themselves to email his publicist (who probably hates us by now) people emailed co-workers who have family in Hollywood, some contacted people that were working on set, working with his caterers, his security… any way to get to Adam, Eli’s army was on it!!

Sunday evening I got a call from John Bolaris confirming what we were hoping …that something was going to happen. John is working with Adam’s people while he is in town. Although my hopes were up, I still refused to believe.

Later that night we did an update with NBC10 to share how amazing our community has been with trying to make Eli’s dream come true. The excitement was growing and by Monday morning we had hope that Adam would be so sick of hearing about Eli that he would do something just to shut us up!!

Tuesday morning I sent the second letter explaining MLD to Adam’s team. I would imagine they get numerous requests, so they needed to verify that our story was in fact not made up. Within a half an hour I received an email saying that they were in the process of working on something with Adam. Hours later the unthinkable happened and we had a zoom set for the next day!!!

Woo Hoo!!!!! This was such a group effort and there was no way to express our thanks! We shared the news with Eli later that evening and the joy was palpable!!!

Wednesday morning came and we had Eli tell us his favorite movies, movie lines and any questions that he had for Adam. We were prepping him so he didn’t forget anything. I mean this was Adam Sandler … Eli’s hero!!We were told we had maybe 15 minutes with him, so we wanted to be prepared in case Eli was star struck.

We got an email an hour before the scheduled zoom saying that Adam was on lunch now and was ready!! OMG, it was probably better… less time to get nervous.

In about ten minutes we signed on and much to our surprise a familiar face greeted us. Jonathan loughran who most would know by his crazy eye in many of Adam Sandler movies was on the other end of the zoom. He told Eli not to worry that he wasn’t Adam and after dealing with my craziness making sure we could video the zoom, Adam popped into the screen!

After the initial hello, the two of them sounded like they could be best buds. Eli would recite a movie line perfectly and Adam would guess the wrong movie, then Eli would tell him what movie the line was from. This went on until Adam got a Jack and Jill line which he was very happy about. The jokes and movie lines went on and on. He asked us questions and had something funny to say to everyone. He was funny, down to earth, and genuine. Never did he look at the time and every time we thought the time was drawing near the end he kept going. There are no words to describe his kindness to our family and of course to Eli. He was more than we could have ever hoped for. He spent 40 minutes with Eli and every minute was spent well…with laughter and memories to last a lifetime!

Thank you for making this dream a reality. To witness the outpouring of love for Eli and to see so many people genuinely want to see this happen has been such a gift that we will cherish forever. As often as we might feel unworthy of all the kindness and love, we are reminded that this is not about us but about Eli. He is such a special young man who is so deserving and he continues to teach so many about what it really means to live!

Thank you Adam for a day that will bring Eli joy forever!!

PTSD

•August 6, 2020 • Leave a Comment

You don’t know what you don’t know! Thankfully there were things I never had to “know” years ago as I went about my life living as if I was exempt from the sorrows and the trials that only plagued “other families” I never imagined that I could and would soon become a victim of my own mind.

“She was stolen, she is lost, she is being sold, she was hurt, she is dead” It took ten minutes for these thoughts to run through my head when Ella got lost in Italy. She had been under anesthesia an hour prior and was in a stroller in the grocery store because she is disoriented after being sedated. Imagine a grocery store twice the size of Wawa. She must have gotten up when one of us turned to grab some food for the evening and that was it. I thought she was with Hut and he thought she was with me. In a matter of minutes we realized she was nowhere to be found. Almost everything went blank…it was a big fuzz all around me and I couldn’t hear anything but my own voice screaming “Ella!!”

Imagine forgetting how to say daughter in Italian, how to say anything because your mind goes blank, all you can do is scream that your daughter is gone!! We searched the store which took a quick minute and ran outside. People were staring as we were screaming as seconds turned to minutes. The police showed up after about ten minutes asking for pictures of our precious Ella. I couldn’t believe this was happening. Suddenly a crowd drew and we found some amazing people who could speak English. Italian people who became our lifeline with the police and who would become our friends still today.

After 30 minutes I had every worst scenario played out in my head and there was still no Ella. We were almost a mile from our “home” at the hotel so after searching the pond behind the store and the local stores Hut decided to run back to the hotel.

Forty minutes after Ella went missing my phone rang and it was Hut. Ella made it across two bridges, past the pond, up the elevator stopping at the second floor in the hotel to end up going to the fourth floor, walking to the last room on the floor where she sat in front of our door waiting for someone. When he called me I remember falling to my knees unable to talk but only able to cry. Ella was alive and we were granted such a miracle that afternoon when she safely made it alone at 6 years old back to where we would find her.

I knew how lucky we were especially after the police shared with us that just last week a child was taken at the Food Expo in Milan where over 115 countries were participating (where we were supposed to go the following day) As of that day the child was not found.

We went on with our trip and their testing and were eager to get home.

Months go by, maybe years and I never realized how that moment affected me.

The last two years I have started to realize just how much that day has changed my life.

The situations may be small, they may not be worthy of worry but in an instant it takes me back to her being gone and all the terrible things that could happen to her. I remember how these feelings came out early this year when Hut told me the bus passed and Ella did not get off, but the other boy did. I remember not being able to breathe as I watched the seconds tick away on the clock hanging in the kitchen. Did Hut have the wrong bus? Was she late? She is normally home by now. Seconds turned into minutes as I called the school and after what seemed like forever Ms. Finnegan answered and helped me. As she put me on hold, I was texting Kristin, and watching the clock tic… that is when I really knew how NOT normal this was. I was losing my shit and… and nothing! Kristin said Sophia was home so why wasn’t Ella? The anxiety grew until I thought I heard a bus… at the same time Ms. Finnegan came back on the phone and said the driver was running late and she should be home any minute. I apologized first, then I thanked her and hung up.

I didn’t realize how much I was shaking until Ella ran to me like normal and as I hugged her I could feel my body shaking from inside like a cold winter’s day. After getting her safely inside I had to take time to compose myself, but as I did this, so much came rushing back and I realized just how much I was affected by that day years ago in Italy.

Something as simple as putting the kids to bed in one spot and waking at 3 to check on them is normal but for me when someone changes spots, even before I look in other beds my heart races and my mind becomes my enemy sending me to the depths of the darkest possibilities.

This PTSD is every growing unfortunately and it has happened numerous times since the bus incident. It’s horrible and I can’t imagine an end.

I go to bed and pray for those in situations where PTSD takes away your joy, makes you scared and makes you a prisoner in your own mind.

I once said that being a prisoner in my own mind feels like I am being buried, but my dear friend said “Becky maybe you were just being planted and need to bloom”

I pray every day that I get closer to acceptance and healing from all of this and it propels me forward with new lessons learned and growth to be grateful for 💙❤️

Let’s be honest

•August 3, 2020 • Leave a Comment

I hate my life sometimes…I mean doesn’t everyone? I don’t know, maybe its just reserved for people like me who are filled with anxiety and struggle on a daily basis. Having a son who can’t walk is a struggle. It changes everything, so many things that you don’t even realize until it pops up and then you are like “oh shit we can’t do that anymore” The pain is real and it spreads like wildfire.

Having two older typically developing boys I want nothing but the best, most joy filled life for them. I don’t want them to be “stuck” with us not being able to do things, or limited to the amount of things we can actually do, because that simply is not fair for them. This is not THEIR life, it is my life and Hut’s life. Yet, last night when a situation arose it made me hate my circumstances of my life, it made me jealous of the “normal” families and it made me wonder what the purpose in this disease is when it finds so many ways to bring me down, but thankfully I walked out to get some air instead of mowing everyone down due to my own sadness.

My older boys have opportunities this summer to go away for some days with other people and they will go and have a great time. I would never stop them from living because that wold just be plain old selfish. Unfortunately it is not that easy for the rest of us. If I am being honest, I want to go and take them to the beach, or take them to the waterfalls, I want to go back to Dutch Springs, or go out in the ocean and ride waves for hours with them like we did so long ago. I want to LIVE and enjoy these moments with them but when you have a child or two with special needs or who can’t walk anymore suddenly all those things become a distant memory.

I don’t want to be bitter but damn its hard not to feel that way some days. Eric and Evan deserve more…they deserve to be free and not be chained up to going places that only a wheelchair can go. They deserve more and they deserve a mom who is happy that they have other opportunities in life to do things that they simply can’t with us. Please God don’t let me become a bitter woman who pushes people away because of my anger and sadness. Please if there really is a God help me see the purpose in this pain and please let me push Eric and Evan away from these chains into the “normal” life that they should be living and that they so deserve!

The silent thief

•July 19, 2020 • Leave a Comment

23 years sounds like a long time. Almost half of my life… and it seems like forever ago but somehow it also seems like yesterday. Many people might not be able to remember what life was like all those years ago but I do. I do because one day I was “normal” and the next day I wasn’t. A silent thief would invade my life like nothing I could ever imagine and would leave me with only remnants of the young lady I used to be.

As a young married woman, life was easy and fun… not too many worries, or thoughts of the future…just enjoying life. All this changed one day when Hut almost died. He was playing basketball and came in to tell me he was stung by a bee and didn’t feel right. I called his dad and because I didn’t feel comfortable, as he was starting to feel weird, we jumped into his truck and started off to the hospital. Now this is when the bridge was out to Phoenixville so I went the back way. I remember passing the police station and him telling me he couldn’t hear anymore then 30 seconds later he was passed out in the front of the truck. I thought he was dead and drove as fast as possible to my dads right around the corner. I pulled in and honked like crazy. My dad and step-mom came out and after I told him what happened he called 911 immediately. I remember it vividly as he was unconscious and I thought he was gone. Within five minutes Trappe ambulance was there and they stuck epinephrine right into his chest to save his life.

We followed the ambulance to the hospital and while I was in the waiting room, they came out and told me that although things were shutting down at first, he looked like he would make it. They released him in the wee hours of the morning and we ended up at my in-laws just in case anything happened and we needed help.

It was about a week later that Hut went back to work and we tried to move on from that day. For me it never happened. I wouldn’t remember what normal ever felt like again after that night.

One night Shortly after the bee sting I was sitting by the window waiting for him to get home from work, worrying about not being in control of what could happen. I remember feeling better after Hut got home but 30 minutes later I ended up feeling like I was dying. Little did I know I was having my first panic attack and I ended up at the hospital shortly thereafter. My life would never be the same.

23 years later – 100’s of questions; some answered but most not, lessons learned, change, growth, loss, cries to God, doubts, fears, gratitude but no matter what always love.

I will continue to live the questions, hoping to get some answers but accepting the fact that no matter what, I will choose to keep forging ahead as best as I can. This thief; this anxiety, fear or depression has taken so much from my life and might never stop taking but I can try accepting, instead of fighting it…for maybe my success in conquering this will only come with my surrender to it.

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 • 4 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.