Fear Not

No matter how many times we do it, it never gets easier – Day 5 in Milan

•April 20, 2023 • 1 Comment

A dreary day here in Milan but thankfully we got a ride to the hospital because we had to arrive by 7:30. We knew it would be the longest day of the trip, and that’s what it was. Long and hard.

Today was MRI day, not only that, but lumbar puncture, bone marrow aspiration and EMG. Thankfully all of this took place while sedated, but that is the worst part… for Ella anyway.

The tears started shortly after arriving and getting situated in our room at the day hospital. Thankfully some of the people we are familiar with which always makes it nicer.

Ella was first and got her IV placed for sedation. I don’t think it it so much physical pain but more emotional distress that disturbs her the most. We couldn’t understand what they remember or what really bothers them about the last ten years but I’m sure it goes deeper than we know.

It was a rather quick process this morning which we were so thankful for and shortly after taking blood, we went to the room that she so dreads. Lots of people and a room that looks just like an OR. In Ella’s words it’s “too many people” and that scares her. No matter how many times we do this, it seems to be the same outcome every time for Eli and Ella. Ella sat on the table to get ready for anesthesia and the tears started again. When she cries, it’s so hard not to cry with her, so I just cradle her with my tears falling on her. As her mom I hate this, but it’s so important to get the big picture of how MLD is affecting their whole body.

Thankfully she was out cold very quickly and I darted out to get some fresh air before heading back up with Eli and Hut. I only stayed to drop coffee Americana because Eli was doing just fine. Hut sent me a pic not long after, that his IV was placed with no issues and he would be heading down as well.

The MRI is about an hour but before that is when the procedures take place, so when Ella was off into the MRI, Eli was getting ready to be sedated.

Hut and I sat in the waiting room chatting with Miriam and waited for Ella. Just as I was wondering when she would be done, the doctor came out and she she was finished AND happy!!

For years, she used to wake from anesthesia angry, but today she was happy and wide awake. We went back upstairs and got her settled before I headed back down to wait for Eli. She had to lay there for a couple of hours flat due to the lumbar puncture which worked out great as Eli was now in the MRI.

His seemed to go quickly and when he was finished, I went back to see him. It’s so ironic how opposite they are, because as easy as Eli is going in, he takes so much longer and is grumpy afterward. Today was no exception.

When he was alert enough, we went up to his room which was next to Ella’s. By now she was having water and eager to eat. It took Eli some time to fully come back to himself and when he did, he was not too happy. We thankfully know how they typically respond to anesthesia so he had some water pretty quickly and some food not long after. He was not thrilled with having to lay on his back and the screaming baby a few doors down. By now, Ella was eating and eager to go “home” and then we found out we had to get a dexascan today before we left. You can imagine, they were not happy.

At 2:30 we pushed them down to where they do the scan and thankfully, it only took about 10 minutes each.

I feel that we did too much moving because Eli started complaining about his back and hip. After arriving back at the room, we waited about another hour until they took out their IV, then we headed back to the residence.

They are both in bed resting and actually Ella is asleep, so we are hoping this doesn’t completely mess up the night, but she needs to rest her body. Eli is still in pain in “his spine” as he says so we pray it eases up by tomorrow.

All in all, they are good, and we have to remain focused on the fact that being here is a blessing and a gift that many do not receive.

Posted in Along the way, Back to life and living, Diagnosed, Diagnosis, Life after diagnosis, living, Milan
Tags: anxiety, challenge, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, grateful, gratitude, happiness, Hero, hope, journey, joy, learning, lessons, life, Love, memories, metachromatic leukodystrophy, Milan, MLD, MRI, never give up, purpose, rare disease, sorrow, special needs, strength, warriors

A good day – Day 3 in Milan

•April 18, 2023 • 4 Comments

Ella and I started the day at 8:30 at the hospital. An EEG was the first test on the schedule for today. A test that she despises and from what I remember after talking with other kids who have to get them, she is not alone. I’m not sure if it is everything they put in her hair or just the idea of not being able to move much. Thankfully she did an amazing job today with everything and I am so proud of her.

After the EEG she went to meet with the psychologist for a two hour neuro-psych examination. Thankfully she has known Dr. Francesca for years now, so it was not anything she was nervous about. She did a great job and then it was time for a break to eat.

Ella chose pizza again 🤣

After lunch we went to see the dermatologist, followed by the cardiologist. Everything could not have gone any better today and we are glad to have another day in the books.

While we were at the hospital, Eli had the day off, so Hut took him to breakfast and lunch where he had his first chocolate croissant and yes, another pizza for lunch. He actually ate the whole pie!!

Tonight we had a wonderful dinner at the Chinese pizza restaurant by our residence with some amazing friends that have welcomed us in Italy with open arms from day one, ten years ago. The gratitude I felt tonight looking at these kids filled my heart so fully that there are not enough words to describe. The pictures tell a beautiful story of friendship that has made many days brighter here in Italy.

Today when I took a walk to get some alone time, I saw so many turtles in the same place sunning themselves and of course the fish that we have enjoyed feeding over the years. I did get yelled at in Italian to stop feeding them though. I think they are getting too big 🤣maybe that’s why.

I received an email today while at the hospital, and we were invited someplace very special tomorrow which I will share tomorrow, but it will be very meaningful to us.

All in all, it was a great day and no real complaining except from Eli who is ready to be home in his own bed ASAP.

They are finally falling asleep as I finish writing and as they were, Eli asked if we could pray. It was simple prayer of thanks for Chinese pizza and a beautiful day. I love his heart so much and I hope to continue to appreciate the simple things, just like Eli!

Posted in Back to life and living, Diagnosed, Life after diagnosis, living, Milan, the ride of my life
Tags: appreciation, changes, clinical trial, day by day, eli and ella, Eliandellasprayerwarriors, family, friends, gene therapy, gift, God, gratitude, growth, happiness, healing, Hero, hope, hospital life, journey, learning, lessons, life, live, memories, metachromatic leukodystrophy, Milan, miracles, MLD, Mother Nature, never give up, past, purpose, rare disease, special needs, spring-ford, strength, struggle, thankful, warriors

For a moment, not much else seemed to matter – Day 2 in Milan

•April 17, 2023 • 4 Comments

Yesterday I wrote about a family that we met years ago who had two kids with MLD. One was a part of the trial, and the other, Omar, was too progressed for treatment. I shared that we are staying in their room where they used to stay, and how special their only son Omar was to me! Today when we were in the hospital, I brought up the family only to learn that he passed away from MLD not even a month ago. My heart was crushed for his mom, dad and three sisters. Suddenly as I looked at Eli and Ella, nothing else seemed to matter at that moment except the fact that they were here, alive and happy. Omar will be missed and I will never forget his smiling face, his laughter and the joy he brought to many.

His three beautiful sisters who we blessed to spend time with

The kids slept surprisingly well last night, and we actually made it to hospital on time today. 8:30 may not seem early, but trust me it is, especially when we walked there, and even had breakfast before we left.

We arrived to some wonderfully familiar faces and went into the waiting room where we met Dr. Biffi and her team more than ten years ago.

We started the day with an EKG for both, along with a blood draw.

From there, we went right into the motor skills evaluation, which they both did really well with, despite it being our first morning at the hospital.

We had a quick break, so we went to one of the familiar pizza places below the hospital. Some of our friends who have worked there for years were still there, and one of them, Carlo, came right up to us to say Ciao to the kids. It’s amazing how many people we have come to know over the years and we feel so grateful for those familiar faces.

Back for one more test after lunch, and it was a simple X-Ray of their hand to check their bone age. As simple as this was, it threw Ella into a bit of a panic and she was ready to go home. She was upset and crying as they shut the door, but the women were great and after talking for a minute she realized it’s not really the X-Ray, but everything else that was upsetting her. Thankfully after this, our day was complete and we were headed back home.

Time for gelato!!

We ate gelato, finished our walk home, and got ready for dinner. We are trying to see some old friends while we are here, so we headed to Hotel Rafael for dinner and got to see our friend Vicky as she works there. She was our waitress tonight, which gave us plenty of time to catch up! It is just beyond beautiful when I think of all the wonderful people that we have met, who have helped us in some way, shape, or form along this journey.

We had a delicious dinner, reminisced about the years and moments spent here, gave lots of hugs and walked back home, not before stopping at the beautiful fountain that is outside of the hospital for a quick pic! The perfect way to end a great first day for these heroes of ours!!

As hard as this trip can be, with so many emotions being dredged up, I can’t help to be reminded that this too shall pass.

Unfortunately, for those like Omar, that weren’t so blessed to get Gene therapy or another life prolonging treatment, MLD continues to rob them of everything that their parents hold close, until their body can’t fight anymore. So, tonight I choose to go to bed thankful for the laughter at dinner, the tik tok filters of Huts face that made Ella laugh till she cried, and the conversation happening in the other room between Eli and Hannah. This may be hard for us, but the alternative is much harder. I Never thought I would reach this level of acceptance all those years ago, but I am slowly getting there. Learning to love and accept not only the skin that I am in, but loving and accepting the body that Eli and Ella are in as well.

“ The luckiest of the unlucky”, I have said it for years, but on days like today, it hits home even harder and I thank God for being my anchor through it all.

Posted in Along the way, Diagnosed, Diagnosis, Life after diagnosis, living, Milan, the ride of my life
Tags: acceptance, changes, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, luckiest of the unlucky, memories, metachromatic leukodystrophy, Milan, miracles, MLD, never give up, rare disease, San Raffaele, sorrow, special needs, strength, warriors

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
Tags: acceptance, back where it all started, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, finding the good, gene therapy, God, journey, joy, life, listening, Love, memories, metachromatic leukodystrophy, Miracle, MLD, never give up, PTSD, sorrow, special needs, strength, tears, warriors

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
Tags: acceptance, anxiety, believe, challenge, changes, day by day, drowning, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, Fear, gene therapy, God, God is my lifeguard, gratitude, Hero, hope, journey, joy, learning, life, lifeguard, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, sadness, scared Jesus, sobriety, sorrow, special needs, strength, trust, warriors, water

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
Tags: acceptance, basketball, clinical trial, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, ella, Ella Rose, Enjoythemoment, fierce, friends, gene therapy, God, gratitude, hope, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, never give up, normalcy, rainbow loom, Rams, special, special needs, strength, warriors

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
Tags: acceptance, basketball, changes, coaches, day by day, eli and ella, Eli and Ellas Prayer Warriors, Eliandellasprayerwarriors, Enjoythemoment, family, feel good, gene therapy, God, gratitude, Hero, hope, inclusion, inspiring, inspirstional, journey, joy, learning, Love, memories, metachromatic leukodystrophy, MLD, more than basketball, my four warriors, never give up, Rams, special needs, spring ford rams, spring-ford, strength, warriors

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