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. 💙💛
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
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:
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.
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 sufferingso 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 💗
So often we find it in ourselves to offer forgiveness to others or maybe patience and even grace. When it comes to me I know I am good at all those things when it comes to others, but when it is time to show myself these things, it isn’t as easy. This week when I tried to be the “fun” mom again, (like I remember being with Eric and Evan) I pretty much failed, but I succeeded at something I normally don’t. I gave myself what I normally only save for others… GRACE
The kids had off Monday and I have so many memories of doing things with the older two when they had off school but lately I am so wrapped up with other things in my own head that I sometimes feel like I forget to have fun. Instead of having a YES day, which Ella asks for often, we searched Pinterest to find something to do on the day off. Now if you are into Pinterest fails, by all means keep reading.
Ella found a treat to make herself and it was such a cute idea, seemed easy enough and something she could do with minimal help, so I said “let’s go”! Time to make our own fruit roll up snacks! We got the ingredients, and everything went smooth. She cut the berries and used the food processor to mix them with some honey. She spread out the parchment paper on the cookie sheet, poured and spread the fruit mixture on the tray. it looked just like it did online and smelled great. Now time to cook and then enjoy.
Three hours later (in my SpongeBob voice) we checked the oven and it wasn’t ready so we kept it in another hour, then another hour and by now, the day was almost done and it was time to cook dinner. I don’t remember when we took it out, but the sides looked pretty good, BUT, I realized the middle never set! I was not about to keep it in the oven for the rest of the night so we just peeled off the ends and tried to salvage something.
YUK! That was how Ella described it and that was it! She didn’t want it, and wasn’t about to eat it. Now, I thought it was ok but it did not even meet Eric’s standards and after a bite, I realized it would soon end up in the trash.
I was feelingbad and bummed out, then I said some not so nice things to myself, but in the end I ended up giving myself some grace. I chose to be loving to myself even when I really didn’t want to.
To learn to be as kind to yourself as you are to others isn’t easy, yet It is easy to put yourself down and have negative self talk but I am a work in progress and trying to learn every day that this life is hard and I need to give myself grace along the way.
As a special needs mom, one of the hardest and most heart tugging parts can be the simplest of things. The things that you once took for granted such as parties, hang outs and being a part of a group. Theses things can change as your child’s peers continue to mature while your kids stay in limbo. For me personally, it’s almost the hardest part of how MLD has changed our life. After ten years you think it would get easier to handle, but it’s just not that easy. Thankfully this year we have had some pretty amazing people who went above and beyond to help both Eli and Ella feel like they were a part of something that they normally wouldn’t be.
My dear friend Christie, who I might add, has the most beautiful heart, reached out on our behalf to the soccer coaches about having Ella as a “manager” this season for the 8th grade team. The coaches were on board and truly made Ella feel like part of the team. It’s not as easy as it seems though because Ella does not have a good memory, so someone had to come get her every day for practice and before the games. These girls made her experience so special and she never felt like she didn’t belong there. Ella went to every practice and almost every game! She tried to root her team on, while meeting new people. Yes, she doesn’t remember their names but she knew that she was a part of something, and every single time she put that uniform on, she absolutely loved it!!! I could not thank the coaches, and young ladies enough!! Memories for not only Ella, but for us as well.
Eli loves his sports and over the years, The people that are a part of some of the Spring-Ford teams have included both Eli and Ella in events, which has given us/them many memories that will last a lifetime. This year we learned from a couple of the basketball coaches that they wanted to invite Eli to be on the bench with them this season as a “manager”. Eli was pumped at the thought of this and has only missed one game so far. I think every game he is more excited than the last as he is walking out that door! He doesn’t like losing, so we are lucky the Rams have been playing so good!!!
The pictures here are hard to look at without feeling all sorts of emotions, but they tell a story. A story of compassion, kindness and inclusion. A story that would not have been told had it not been for some amazing coaches and young men who are makinga difference in our life by inviting Eli into theirs.
I hope one day people realize just how grateful we are for thinking of our kids, and I hope Eli and Ella can add something special to their life just as they do to ours!
SF Proud !!!Ella on game day on the way to school Every game they stand with Eli Coaches Tommy Melts my heart
Today was my 50th birthday! It’s not something that ever bothered me, thinking about turning 50, but more so, I appreciated the fact that I had the privilege to celebrate another birthday. The day started as one of the best, as I woke to the most special card from Ella. A gift I will cherish forever.
As I looked at the front, it seemed as though it was like any other card that she would write for me that I would cherish. A picture, some I love you’s, but also, a surprise on the back that would make me feel, for a moment, that the disease had no control over her. Words that would come from someone who could express exactly what she feels, and written in a way that could only bring tears to my eyes. It was a gift, and it completely made me see her in a light that I have never seen before.
I’m not going to sugarcoat my feelings. This disease has made me angry, what it’s taken, how it’s changed them and the thought of what lies ahead. It’s not something I’m proud of, but it’s something I am working on. Today, thanks to Ella and the words she wrote to me, and about me, the anger and frustrations were replaced with appreciation and a feeling of gratitude that I have not felt in a long time. Today was a good day!
Since growing up with MLD, many things that happen in my relationship with Ella are questioned. Did this happen because she is 14, is she being a typical teenager? Maybe it’s because her brain is atrophying and she can’t help herself sometimes, I simply don’t know. I do know that I have spent so much time on what troubles her, but the card…her words opened my eyes. God gave me a gift in her words and for a moment I felt like God worked through her to give me just what I needed.
I always dream of what her life would be like without MLD being a part of it, and today I was given a small glimpse of it. It changed me and reminded me just how unbelievably lucky I am to have her here, teaching me lessons of gratitude and as she so perfectly put, “together growing” into the mother/daughter duo we were meant to be. 💗
Fear Not 