Back to where it all started – Day one

•April 16, 2023 • Leave a Comment

I woke this morning feeling refreshed, not sure how due to getting home so late from Adam Sandler last night, but I know I was ready for this trip. I was also emotional but there is just a lot of PTSD that comes with these trips.

Saying goodbye to Eric was probably the hardest today. He hugged me good and said “this is it” I know what he meant and so did he, but somewhere in between, there was an unspoken feeling, so much more that could have been probably been said, but he knew and it stayed on my heart. Leaving him brought back to me, many memories of all the times that I left him and Evan to come to Italy. As their life at 13 and 11 was suddenly thrust into being forced to take more care of themselves, and miss their mom being home at such pivotal times in their life. Unfortunately I can’t go back and change any of that, but as he hugged me today I could see the young man that knew I didn’t want to go, the young man that saw that we all suffered these last ten years and a young man that is now a more loving, caring and compassionate adult that I am so grateful for.

We got in the car and we were on our way. We had the most awesome driver to take us to Newark and as we talked (more me) ha ha we learned what an incredibly tough life he had after losing his mom at 6. Herman was his name and he shared many good life quips and stories. His words were a another simple reminder of how much we all have suffered or are suffering, but as he said,we must keep our head straight and focused. It was a 2 hour ride that felt like a half hour thanks to Herman.

We arrived at the airport and of course my bag weighed too much…they call me the “overstuffer” so after I managed to get them even we walked to security. Now we should have had help set up from Italy through the airport but it didn’t happen unfortunately. Yet, some incredible woman saw us with the kids in Eli’s chair and immediately pushed us to the front of an extremely long line, I silently thanked God with a tear in my eye.

We made it through security until they picked Ei to do a full body pat down on along with his chair.

As annoyed as I was at the time it was taking, Eli just sat there learning new stretches to get in different positions for them, and I couldn’t help but laugh.

We had plenty of time to eat before our flight, so we found a pizza place, go figure since I’m sure we will have enough these next two weeks.

We ate, and went to our gate. Let’s just say I felt the Karen in me starting to come out as I noticed there was no place to sit and wait at the gate, as they have all these tables now, but nowhere near enough chairs, then as we were waiting to board, the airport was struck by lightening, which pushed things back a good hour, but we finally boarded. Karen continued to try to come out but thankfully she didn’t make it. We sat on the tarmac for about two hours waiting to leave and since I’m not drinking, we’ll let’s just say I really wanted one.

Enter Karen

After a rough hour or so in the air from the storm and bad turbulence, things settled down and we were on a good pace to get to Milan.

Half way though the flight Eli’s legs were cramping, and not feeling good. The only thing I normally do for this is to take off his braces; which is not easy on a pretty full plane. One of the stewardesses saw me in the aisle struggling, so she came over and asked if I needed help? I explained that everything was good and he just needed some space. She decided to take matters into her own hands and find two seats up further for Hut and Ella so Eli was able to stretch his legs. I was in awe of her kindness, but she was more than happy to help however she could. Off came the braces and as Ella and Hut moved up to get comfortable, Eli did as well. It was a beautiful gesture to help him become more comfortable and I appreciated the kindness so much.

After landing, we had help here thankfully and quickly went through customs then right out to get in the van.

After an hour ride, we made it right back to where this journey began 10 years ago at the NH Milano in Segrate. We got our bags out and after five trips (the bags rode separately because the elevators are so small) we were checking in. We then walked to our room, and as much as I had hoped for one that we had when we lived here prior, it seemed to be impossible due to a fashion expo going on in Milan right now as everything is booked. I have to admit, our room may not have the lake to overlook and it might not be as large as before, BUT it was the room that one of my most favorite family lived in when they were here getting their daughter treated for MLD. They also had a son Omar who suffered from MLD and I fell in love with him on day one! He in now 19 or around that, and I used to say , and truly believe that he is only still here because of the love from his family. One of the greatest families ever, so I feel truly blessed to be in this room and thinking of them!!!

Eli made Hut take him to Chinese pizza the minute we got here:)

As I unpacked, my wonderful friend Erica told me she would run me to the store since nothing in our little Segrate is open today to walk to. As I waited for her I walked and fed the fish and turtles, I soaked in the sun and just felt such gratitude for it all. It’s not easy, but damn have we been so blessed along the way. Not even here two hours and here was Erica running me to the store so get some things for the apartment.

After arriving home, I walked in to a few sleeping people. It made me so nervous about the evening as I tried so hard to stay awake. Suddenly it was me nodding off, not knowing where I was and answering Ella’s questions so randomly that Eli and Ella’s laugh pulled me completely from any slumber I was about to enjoy and off to dinner it was.

We made Hut smile even if he didn’t want to;)

After feeling the fish, we ended the evening with some funny Italian tv show.

As I write this, everyone is asleep and I pray it’s going to last through the night, as the first couple of nights are hard getting acclimated.

So cheers to day one down!!! These two are rockstars!!!!!

Thank you for the prayers!! We are so grateful!!!

Posted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
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Drowning in my sleep

•April 5, 2023 • 1 Comment

I don’t remember where I was, but I do remember the rush of water going into my face, and in my mouth. It prevented me from breathing and I could feel my heartbeat in my chest while I was sleeping, which thankfully woke me up. Unfortunately, as I fell back to sleep I went right back to the water rushing in on me. I could see it and feel it overpowering me, so much so, that I once again couldn’t breathe, and thankfully this time I woke up for good.

I wondered for the first hour of the day what the hell that was about, but as the nerves started to set in about Eli’s appointment with the surgeon today it became evident that so many things have been smothering me lately and at times I have felt it hard to just breathe through them. I’m drowning.

For the last few months Eli has been going deeper than he ever has with his feelings, emotions and questions. It’s so much more than asking if God will heal him, although that is still a question on his heart. It’s those questions that you hope don’t come but when they do, you really have no answer for. You try to be gentle, yet honest without crushing a dream or a vision. I’m drowning.

Eli recently downloaded the driving permit app on his phone because he wants his permit… of course he does. The kids he was once friends with drive, his brothers drive and he wants to drive. We talked about this being a slim possibility but not wanting to rain on his parade, I left it at that. I mean what else can I say. We know he will never drive BUT is there anything wrong with him learning the rules of the road? I say no! I’m drowning.

Recently someone talked about their loved one being in assisted living, a place that you can go when and if you get older, if you need the kind help that family might not be able to provide on a daily basis. It can be great, but it can also be scary. Now imagine thinking of the future, for your own kids, which I don’t like to do. What happens after high school? There is no thought of college like their peers, and the worry about what kind of job they can get (without you being by their side) is overwhelming. Thinking of what will happen to your TWO special needs children when the day comes that you will no longer be here, or how will you survive if they go first. Which one is better, not that you even want to think of that possibility, but these are the things that you think about. Neither one is easy and I feel like I’m drowning.

Now today we had Eli’s one year post op and I woke with a sick feeling. Not knowing if some of the things we see, or don’t see are because we aren’t working with him enough, because of the atrophy in his legs or simply because of MLD and how it continues to affect him. After some X-Rays and a nice long chat with the doctor, we learned that Eli’s legs are still straight, the titanium is still holding him together and orthopedic wise, he is good to go!!

Unfortunately, some of the issues, I don’t know if they will ever change. Maybe I was naïve, my vision so great that I didn’t want to let anything get in the way of that . Maybe I believed in a miracle that he deserved more than anyone I know. I don’t know what the answer is, but I do know that we will keep working, praying and believing that things can still get better. The thought of wondering if we did the right thing scares me and when I think about it too much I feel like I am drowning.

I think I know the message of my dream now that I have had time to think about it. It is just what it felt like in those wee hours of the morning when not feeling like I was able to breathe woke me up. I’m drowning in the darkness of my thoughts, and the only way out is through.

It’s off to Italy in a little over a week. The last visit of the trial. Lots of tests and hopefully lots of answers. Knowledge is power and no matter what we learn, we can use it going forward to help keep us from another reason to feel like we are drowning, because it’s not always water that makes us feel this way but lack of control.

I refuse to succumb to all these things that weigh me down because I BELIEVE in Gods plan, and as one of my favorite quotes says “ when you feel like you are drowning, don’t worry, your (MY) lifeguard walks on water.

Posted in Along the way, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
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Eli’s sidekick, Ella Rose

•March 28, 2023 • Leave a Comment

As I have stated before, it has been the best season watching the Rams play basketball. It has been great for Hut and I and of course Eli, but it has also been a great experience for Ella as well and I am so proud of her.

Ella sometimes feels lost or unseen (in her words). I can only imagine how hard her life can be at times, between friends, or lack there of, and Eli overshadowing her due to his more complex life and needs. Although we often try to get her to express what she wants or needs, “whatever Eli wants” is what typically comes out of her mouth. If you know her, then you have been witness to this. Yes, it’s sweet but I want Ella to know who she is without it being attached to Eli. More than that, I want her to know just how special SHE is on her own.

Normally, Ella has not much interest in going to games and watching basketball, but this year we have watched her grow leaps and bounds in many ways. A season that started with us not going to the first couple games ended with Ella and I feeling like we are ALL a part of this team in our own way.

Many people know who Eli is, it’s easy to remember him. From his unique walk with his walker to his unforgettable off the cuff personality. He lives in the moment and brings joy to those he comes across. He doesn’t worry too much about what others think of him, and he is super easy to be around,… unless he is watching Philadelphia sports or WWE that is not going his way!

Ella on the other hand, is a bit more reserved, very aware of herself and what she says and thinking TOO much about others. When we would go to games, she would watch people know who Eli, give him a fist bump, or a friendly hello. As much as there were moments that she would get bothered by the lack of attention on her end, she learned something that is invaluable. They are not the same person, and they have different interests, different weakness and strengths. She learned that things are not always going to be about BOTH of them, and she learned to root Eli on without expectations of it being about her.

Ella would wait after almost every game to give the boys five to tell them “great game” she got to see the excitement of the locker room after a great win and she grew to love watching the boys for many reasons;) She learned their names, rooted them on and grew to look forward to the games. She is a teenager so I’m sure seeing the cute boys didn’t hurt either. Ella too, felt like it was her team as well, but in a different way.

About a week ago, Ella wanted to do something for the boys just from her, so she decided to make them all a rainbow loom bracelet in Rams colors. I know this is a pretty easy feat for most, but between misplacing some that she made (a few times)(thanks MLD) her patience, and her fine motor skills, this isn’t always the easiest thing for her. She made them a couple different times and would measure each one on my or her dads wrist to make sure they would be big enough for the boys. She was focused, and so so proud that she could do this by herself without help, just to make the boys smile.

Last night, the basketball team was recognized by the school board for winning the PAC and making it so far in States. Ella counted the minutes until we left for school and she had all her bracelets ready to give out. When she saw the first player, I could see the excitement in her to give him a bracelet. As the boys started coming in, I encouraged her to do this on her own, and go up to each one to hand them out. I saw her smile and she beamed with pride until all but one was left. One young man was missing and she is going to make sure he gets his as well.

Ella and Eli have been through so much together the last 10 years and we are so grateful that they have had each other to save each other. That statement alone gets me every time! They truly saved each other, but I am so grateful that Ella is learning just how important she is aside from being Eli’s MLD partner in crime. To say that I am proud is an understatement. She is fierce, has been from the minute she was born, and my hope is, she can continue to be that way, knowing just how special she is as an individual.

It’s all over for the season, but so many good stories, lessons and joy along the way, for all of us!! Thank you Rams players and coaches for not only bringing Eli on, but for helping Ella to see just how special and unique she is as well!

Posted in Diagnosed, Life after diagnosis, living
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So much bigger than the game -A feel good story

•March 22, 2023 • 5 Comments

When Hut was at the Spring-Ford game last night before I got there, he was asking someone who was working the game where the bathroom was, so he was prepared if Eli had to go during the game. This was what he typically would do at other schools that we have not been to before, so it was no different than another other night.

No different until he noticed a man looking at him and Eli. The man asked Hut if he was with Eli, and while he wondered why he was asking this, he answered that he was his dad.

A man who had no affiliation with either school came to the game last night for one reason, and he went on to explain to Hut why he traveled almost two hours to see the Spring-Ford game, that really had nothing to do with the game.

This past Saturday, the Rams played State College in Mechanicsburg. It was a packed gym and we could never be sure if the gentleman was from the area just watching a good game of basketball, or there to root on State College.

One thing we are sure of, is that when the National Anthem played and our boys went to go lift Eli up so he could stand for our flag, it affected him so much that he drove to another Spring-Ford game JUST to see them do it again.

Those were his words to Hut and as Hut tried to keep a dry eye, it was apparent that we truly have no idea just how powerful certain moments in life can be.

Our time with the Rams basketball team is over for the year but the memories will last a lifetime.

These young men might never understand the ripple effect that their kindness has made on so many but we hope they know that the impact of their choices to make Eli feel included go way beyond the game of basketball.

They brought a man to a game that he had no affiliation with just by lifting Eli up during moments when he struggled to do so on his own.

We rise by lifting others, and that’s exactly what this team has done. 💙💛

Posted in Along the way, Diagnosed, Life after diagnosis, living
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Giving it all in the moment we are in

•March 11, 2023 • 3 Comments

We are about a month away from Eli’s one year post op, and although I don’t know if he is where we thought he would be, I do know that he is better than where he would have been without. For the last year, he has given it his all to get where he is today!! We couldn’t make him do it, he had to decide, and thankfully he never wavered on his desire to push himself to where he is today!


Yesterday Mr. Kinch sent me a video along with a picture of some things Eli was doing in school to keep his body in motion. He not only worked in the gym, but he had his community field trip where he got a ton of walking in! When I got him from school, we went straight to CHOP and he continued working hard like he normally does.

His Therapists recently set some more goals, as we are winding down to once a week PT, so yesterday she wanted to see if he could meet one of those. Standing for three minutes was the one we were going to test, so Miss Natalie set up the mirror to do a little tic tac toe and hangman. After six games and thankfully one win at hangman, we checked the timer to see how long he had been standing. Six minutes and thirteen seconds. He didn’t wobble once during that time and although he finds his own ways to balance, he was standing tall, and better than I had hoped. It’s really incredible because he is almost just using one leg to accomplish this.


We then went to the steps with his crutch and Rocky playing in the background. He did 83 steps with his crutch and no holding on, then we practiced one foot at a time with no crutch and holding on, which you can see he crushed! He was tired from a long day at school, he was grumpy about something that bothered him at school, BUT, he came, he saw and he conquered.

He continues to teach me, and I would imagine others, to SHOW UP!!! Show up, and put in the work, no matter what that might look like. He does not live in the past or the future, but he is living in the moment, giving it his all. What else could we ever hope for?


We waste so much time living in the past, or focused on the future, but this moment is all we have and thankfully he is making the most of every one that comes his way! #livelikeeli

Stretching those hamstrings
6:13
Never Give Up!!

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, the ride of my life
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Getting ready for the big game, CHOP STYLE 😍

•March 1, 2023 • Leave a Comment

Today our PT had Eli doing some basketball drills since basketball is one of the only things on his mind lately 🤣

We love our PT and we love our Rams 💙💛

Posted in Diagnosed
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Bling

•March 1, 2023 • Leave a Comment
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Bling

Posted in Diagnosed
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Will God heal me?

•February 28, 2023 • 2 Comments

These were the words that Eli asked me last night as he was getting ready to get in the shower. It doesn’t happen often, but sometime I see a glimpse of a typical developing teenager, asking questions that many of us as adults ask and just as no one can know for sure what the answer to that question would be, I think I have a better chance at knowing what the answer would be for Eli.

It’s a pain like no other when he goes deep, asking questions that we surely can’t answer. Conversations that I dread to get into, yet when he’s ready to ask, I am there to listen and do my best to help ease his soul.

Hut and I had a conversation a few month back about The Pool of Siloam opening for the first time in Jerusalem in over 2000 years! It is a very holy site where Jesus healed a blind man. I think 10 years ago I would have jumped on this opportunity to take the kids there, believing that anything is possible if it is Gods will. Now, not so much, and not because I don’t believe in God, but because when he told me, I felt a burst of anger at thinking we don’t need to go there, if God wanted to heal Eli and Ella, he could do it anywhere. As of now, it’s just not in the cards.

So, when The topic came up last night and I got down on my knees to cry with him, all I could wonder, was if miracles that big still happen in this day and age. I don’t know the answer, but I do know that we have been a part of some pretty incredible miracles the last ten years. Maybe not the size that Eli is asking for, but nonetheless miracles.

It does make me wonder though, Eli has the most beautiful childlike spirit, believing without seeing and has more faith than a mustard seed, yet the mountain still remains.

Last night when I saw past the MLD and just listened to a young man talking to his mom, I thanked God during this whole sacred conversation. Going back and forth, crying, praying and questioning. Many question I couldn’t answer, but that’s ok. I’m glad he asked.

Maybe as Evan said “ he’s finally starting to realize things,” The disease has actually protected him for so long because most of the time he just goes with the flow and lives in the moment. Last night was different and I felt bad for Evan too, because he got to see something in Eli that he has never seen before. He heard Eli ask some really hard questions but he also helped in his own beautiful way to answer them.

“Why did God let me come here with this disability? I don’t want to have MLD anymore and I want to pray for him to heal me”

That was just a snapshot of the tough questions and although I really don’t have answers for them, but there is one thing that is for SURE, and Evan and I both made sure he knew what that was.

Eli is here to make a difference in the world, to show others how to love, to teach us to live in the moment, but most importantly to love, and be loved. He is changing the world just by doing what God has chosen him to come here to do.

It might not be the answer he wanted to hear but there is nothing more true than what we said. He is an inspiration! Whether God heals him physically or not, I can’t answer that, but I can guarantee that through Eli God has helped other people, in more ways than we will ever know.

Eli is going through it all right now, it’s deep, and at times dark. Please continue to pray for the light to shine through to him and from him, so he knows just how special he is, even in a body that less than perfect:

Eli pumping iron at school. Photo credo Mr. Kinch

Posted in Diagnosed
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He was once like you

•February 16, 2023 • 2 Comments

These last weeks watching Eli with the Spring-Ford basketball team, have opened my eyes, but more importantly my heart, when I didn’t think it was possible.

Eli was once just like you. He was just like the boys that I have grown to love watch play ball but it wasn’t always that easy.

I used to watch Eli run in races, play soccer, basketball and baseball. It was one of my greatest joys watching him, just as I watched Eric and Evan as they grew up doing the things that they loved doing. Unfortunately those moments slowly came to an end and life started to look different as we now had to find other things that his body would allow him to do.

When Eli started on the team, it was hard for me to go to the games. I would go to one here and there, but all I seemed to see was peers of his doing what they loved, boys that reminded me of what Eli could been doing if MLD did not Enter our life. Some boys were older and some were younger but it didn’t matter, because he should have been playing and not just sitting on the sideline rooting for his team. I felt anger at times and I also felt sadness.

MLD is a thief, and it has robbed us of so much, but I believe when I look at the bigger picture, it has given us much more than it has taken away.

As I started to go to more games, I stopped seeing what I didn’t have and started seeing the joy that being a part of this team was bringing to Eli’s life. I watched as some pretty amazing young men made their own handshakes with Eli and made him feel more special then I could have ever imagined. I saw the smile on his face every time they would slap his hand when they walked by and also the joy of walking with the team at the end to say good game to the other team. I got to see coaches that made him feel like he was just as much a part of the team as any other young man there.

When these boys won the PAC, Eli was included in everything. He was in the pictures, he was given fives by his teammates and he even got a piece of the net like everyone else. I cried like a baby watching this, but they weren’t tears of sadness, they were tears of joy. Emotional to say the least, these young men have helped change my view, just by treating Eli, the way I have always dreamed.

I thought MLD would take that and many other opportunities from us, but it didn’t, and it has given way to lessons not only for our family but for those who invite Eli into their life, whatever that might look like. Last night it happen to be at a basketball game. It also just so happen to soften a heart that has been filled with so many “whys?” For way too long.

I FEEL a joy that is palpable… It is an energy that has moved mountains, and will continue to do so. the big mountain being the way that I choose to see what is in front of me.

Thank you to those that have been a part of changing our lives. We are eternally grateful.

Posted in Diagnosed
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The ups and downs and things you hope never come true when you sign up for a clinical trial.

•February 6, 2023 • 2 Comments

It’s been quite some time that we have been wondering what is going on with Ella. There have been mood issues, trouble falling asleep, some rage issues among other things. I have listened to others as they suggested maybe it’s the age, or the gender, but somewhere inside of me, I just knew it had to be more. My heart and head thought maybe another diagnosis was coming and I was right. It has been about a week since we got her test results back and I’m still trying to process it as we wait to see the doctor.

When Ella was getting ready to go through Gene Therapy and start the clinical trial, there were numerous papers to sign as you can imagine. Medicines they would use, problems that could happen. We were overwhelmed to say the least, but we had one goal and that was to save Ella’s life, no matter the cost. The enormous amount of chemo she would have over four days to kill her cells and make room for her new ones had the possibility of causing many issues. Some during treatment and some later on in life.

We are now at the later part of her life, (9 years post transplant) and we now know what can be/is causing many issues with her.

We went to see an endocrinologist last year and everything looked good, her bone age X-ray was younger than her age but we expected that due to treatment. Fast forward a year and another appointment for the same issues that continue. Frustrations are building both with Ella, her brothers and dad. I too am frustrated but I have always felt like it might be something she can’t control, so I have been trying to maintain my composure and patience as best as possible.

When I got the email that her blood tests were in, I was eager to check… maybe we would finally be able to help her and know what was going on.

I will rewind to the papers that we signed before treatment. Many things were a possibility that we had to sign off on, but only a few hit me. One you can imagine, but the other two “Gene Therapy could result in cancer later in life and the high dose chemo could cause ovarian failure”

Knowing this was a chance to save Ella and stop this wicked disease, of course we took it!

Unfortunately the recent test results revealed ovarian failure.

Ella is suffering so many different symptoms and most of it or all of it is due to her ovaries not working. My heart exploded in sadness for her. I just knew something else was going on and I’m so glad we finally know.

I remember thinking 9 years ago that if she can’t have kids because her ovaries don’t work, well that will at least mean she is alive and here with us. That was the way I pushed through everything, just believing in the miracle in front of us and nothing else.

My heart hurts. Yes, I know it’s not the biggest problem… it’s not cancer. Yes I know she could adopt if she ever got married someday, but let’s face it, most likely she will always be with us anyway, and that’s a story for another day.

My heart hurting isn’t about me, (well, maybe a little) but it’s about Ella. She has been through so much and the hits just keep coming. Although it’s sad and hurts, I also thank God so much for leading us in the right direction to find answers. Now we can help Ella, treat Ella however the doctor thinks is best, and we can continue to learn and show more patience and empathy along the way!

We knew the possibilities that we were signing up for with the clinical trial… it didn’t make it easy and and it doesn’t make this diagnosis easier either. We pray that this is the last struggle she goes through but we know that is unrealistic.

Life is filled with ups and downs, more downs for some and ups for others but how we respond is the key. I am generally a scaredy-cat and always have been, but thanks to the down parts, I am slowly learning lessons that I probably would have never learned otherwise.

Ella 🌹, may I always do right by you, my Warrior Princess 💗

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