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

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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.

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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 💗

Posted in Diagnosed
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Learning to give yourself grace

•January 18, 2023 • 1 Comment

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 feeling bad 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.

Posted in Along the way, Life after diagnosis, living
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Inclusion at its finest

•January 9, 2023 • Leave a Comment

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 making a 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

Posted in Along the way, Diagnosed, Life after diagnosis, living
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A gift

•November 4, 2022 • 1 Comment

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. 💗

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Violated and vulnerable

•October 31, 2022 • 3 Comments

So the Warrior page was recently hacked and I’m still coming to grips with it. I will say that people can be cruel… but most people aren’t, and I pray that I don’t become more bitter as time passes. Not only was the Warrior page taken over but, I have been receiving emails and text after text of people trying to scam me to get the account back. I feel violated and it’s not good.

If I even begin to say what happened or how, I could never fully explain, let’s just say that it was the perfect storm and some people just love to take advantage of you. I might also add that people like me who are facing some unthinkable things, tend to not be on their A game like we once used to be. Life has a way of changing you that way.

I made a new page, but as I was typing tonight, I find it hard to start over. Is there a reason to, or has the warrior page run it’s course? I am very down and don’t know what to make of it all to be honest.

We have had some incredible support over the last ten years, I have gotten some wonderful messages and have seen just how many lives have been touched by our journey of hope, and of course how many people have helped change and impact our life. It’s been beautiful and I will be so sad to lose the page if Facebook is unable to ever respond to our pleas.

I don’t know how to reach those that I have grown to appreciate so much, but I have to let go! I realized that as good as this page has been, I have also used it as an idol… I have given it too much energy and I really have to ask myself why?!

Maybe it’s cathartic for me, maybe it’s to keep them so that they are never forgotten about, or maybe it’s just as simple as journaling out loud. Whatever it is, it gave me a sense of purpose.

Purpose is something that can get lost when you get wrapped up in caregiving. That becomes your number one task and before you know it, you don’t remember much about you as a person, only what you DO. It can be like living on autopilot, and hours turn into days, days into weeks and weeks into months before you look in the mirror and say WTF!!

Vulnerability and feeling violated don’t go well together, And when you are already doing everything you can stay afloat, yet the boat keeps taking on water, you have to make a decision to let go and stop fighting, or fight like hell for the hope is still burning inside, dying to be found again.

I am going to keep fighting, and get down on my knees to thank God for getting me through another day. I believe without a doubt, that He can turn any “bad or hurt” into something special, where we can see the good that has come from it.

Please pray for me to continue to trust his plan even when the sun is hidden behind the clouds!!!

Thank you to the Warrior followers who have been with us. You have given so much love when the moments were hard, laughs and smiles through the good times and inspiration to help us get through the toughest of days!!!

💙💗

Posted in Along the way, Diagnosed, Life after diagnosis
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Navigating the rollercoaster of life

•October 19, 2022 • Leave a Comment

Life can be like a roller coaster, up and down, exciting, and nerve wracking. You may feel like you want to get off mid ride or maybe you wish the ride would last forever.

Days and nights can be filled with the same emotions, and as I realized today, it can change minute by minute. Unlike a roller coaster though, the twists and turns of life that lie before us, are unknown.

When the phone rang today and I saw it was Ella’s teacher, I thought maybe she was sick, but instead we talked about other things that were going on in Ella’s world today. Most of these things made me sad for her and to be honest, I wondered how much more I could take.

I’m exhausted from Eli being sick and having him not sleep through the night. All the things that come with taking care of someone who is sick added to his regular needs would make anyone tired. Add the recent phone conversation to the mix and, well, let’s just say I was running on empty.

Thankfully the roller coaster was on its way to the fun part as I got an email from Ella’s coach not long after. As I read the email, I thought just how quickly things can change over the course of a day, and I felt like I was thrown a bone that God knew I needed at that particular moment. Coach wrote that she would like to have Ella be one of the captains in one of the last upcoming home games of the season. My heart was suddenly thrust from exhaustion to excitement at the thought of this special moment for Ella and suddenly I couldn’t wait to see her after practice.

I could sense her excitement when she got into the car when I picked her up and my momma heart was at peace. She came home excited to tell Hut and asked if Eli would be better by then so we could all be at her game! Now, she doesn’t even know what she will be doing as one of the captains, but it doesn’t matter because the moment will be about her, not Eli, Eric or Evan but about Ella, and God knows she needed that.

As I lay here tonight I can’t help but feel thankful for not just the exciting and fun part of the ride, but for it all, because without the valleys, I don’t think I could ever appreciate the complete joy that the peaks bring. 💗

Posted in Along the way, Diagnosed, Life after diagnosis, living, the ride of my life
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I’m sorry Ella

•October 18, 2022 • 1 Comment

I’m so sorry Ella. 

I wish this wasn’t your story. 

I wish you were skipping in front of me like the little girl I saw when I walked into Target tonight with her mom, but you were at home waiting for me to get back with what you think will be a solution to your ankle pain. As I walked down the aisle to look for something to give you comfort, I held back tears wishing so hard that this was not your story, but it is, and I’m so sorry.

You are amazing though, and when I got back with two ankle braces you thanked me and we put them on. After you walked around for a bit, you told me that you think they work and you thanked me again. So much of our conversations are about your ankles or your different pains that you have, and for that I’m sorry.

I often wonder what your life would look like had MLD not changed the course. Would today have been a day of you playing soccer and getting your picture taken as someone playing on the team instead of being a “coach”? Would you still be dancing like you loved to do when you were four? Would you like school and have a favorite subject instead of being frustrated by everything that you struggle with? I’m so sorry Ella. 

Would I be a better mom, less frustrated or more patient? Unfortunately, I wonder all of these things. Maybe if I was as strong as people think I am, I wouldn’t spend so much time on these unanswerable questions. My head is filled with memories of our past life before MLD, and I’m sorry there aren’t more of them for YOU to remember.

If all my sorry’s could heal the hurts, there would surely be no more pain, no more tears and my soul would feel free!

Posted in Diagnosed, living
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Be happy…so I don’t have to be uncomfortable

•October 12, 2022 • Leave a Comment

Be happy!!! I hear this often as I’m sure many do, but it mostly comes from people who have never had caregiver worries and who live the typical America life. Sometimes it’s not as easy to live it, even when you really want to. Thankfully for many, when, and if you do see a caregiver, you might think, “thank goodness that’s not me”, and you don’t have to think about it again. Do I sound mad? Well, some days I get mad, and I get frustrated, I want to be the person telling someone not to worry and just be happy.

Last week I went with Eli to go support Ella at her soccer game. She is not a player, but a “coach” of the 8th grade girls soccer team. We can stop here and say that Ella will never be that kid ON the team playing, she will be the one rooting from the sideline, but that’s not even my worry right now, because some days it’s easier to accept that than others. So, Eli and I went to the game, and as we found a place to park, I realized that there was really no way to get him up the hill. It was a big hill on all sides and by no means could I have gotten the chair up there, and I pretty much believe I can do anything. The 7th grade coach had a couple ideas but most of them probably would have embarrassed Ella more than I would have liked. So, I drove to the other side where the hill was just as big thinking maybe there would be a way up, but, there was no walkway for either a wheelchair OR walker. I decided to park on the side of the grass where I could see Eli in the car and walk up the hill to watch. We didn’t stay long because let’s face it, I brought Eli to get some fresh air and there he was in the car on his phone, so it was pointless.

Now, I’m not asking every school to put a walkway in for handicap people but maybe? Maybe they could find a way for people who can’t rely on their own legs to get to watch their child or grandchild play? Maybe it’s asking too much, but regardless it’s sucks!

My heart is just too sensitive I’ve been told, and yup it is, but I love that about me! It’s made me the woman who I am today and I am ok with that.

This past week, there was a fall fest at school for Ella. She had been talking about it for two weeks and couldn’t wait to go. This was a non parent event (except volunteers) and I refused to be that mom to her on her first event without me. Yes, this is Ella’s first event besides Girl Scouts and the rare outing at a friends house many moons ago. I was so excited for her and I was also beyond nervous.

Ella went, thanks to a Ram Buddy who volunteered to go with her, and I have to focus on the fact that there was someone who was willing to hang out with her. Re-read that … wiling to hang out with her. Is that what this journey is about, being happy because someone is WILLING to hang out with my sweet Ella?

It’s uncomfortable to hear the reality of how this disease has changed our lives sometimes. The biggest being the “friend” change. We have watched Eli and Ella go from having people in their lives to having people watch from afar. The phones don’t buzz with texts, and the bedrooms are quiet on the weekends instead of filled with the laughter from having a friend over. The days and nights are spent with me being their best friend, watching movies, listening to their stories, and being by their side. I wouldn’t change it for the world but I wish I could change the world for them.

Why though? Why is it so hard for people to want to be with them? How do they go to a school of 700 a class and there is not another child that can relate and WANT to be in their life? I’m not blaming anyone but the disease. It’s changed them and it’s hard because to have a friend you have to be a friend… something that doesn’t come easy to them.

MLD has made me angry, yet also grateful. I’m envious of those who don’t know these struggles that I write about, yet many days, I AM thankful that I DO know of them, because it allows me to be more empathetic to others in similar situations and a better human.

This is something I wrote quickly after I woke the day after the fall fest, these are the feelings and words that make people uncomfortable, but unfortunately this is the life I was given and writing is a release.

“I’ve been up about an hour, and yet I still hear the buzzing in my ears, the low grade fuzz that doesn’t seem to go away, and my head feels heavier than the rest of my body. You know that feeling, like You drank one too many last night, but no, this isn’t an alcohol headache, it’s a “what the f is my life about, crying headache”

I apologize if these feelings make people uncomfortable and I’m even more sorry that I feel what I feel. It’s a curse and it’s a blessing but it’s my life and I’m doing everything I can to try to stay afloat.

Posted in Diagnosed, Life after diagnosis, living, My journey
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