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. 💗
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 takingon 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!!!
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. 💗
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!
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.
I have thought about Sept 20th for a long time. I have thought about the sadness that comes with that day, but I decided that this year I would choose differently, but how remained the question. A few months ago I made the decision to find a way to give back to our community who has been so supportive of us over the years. I knew it couldn’t end there, so when we entered The Seashore House at CHOP, it hit me that we could find a way to give back to some that were less fortunate and maybe heal a little more along the way.
Living in the hospital for 7 weeks opened my eyes to how incredibly blessed we are. From day one there were stories of sadness, and it seemed to just get worse.
I have to admit, I went in a bit judge-mental when I saw our “room” How could anyone live in half of a hospital room for weeks on end. (Actually we did this twice before in Italy, so it should have been no surprise) Boy was I wrong! A closet as wide as an ironing board and a bathroom that I was not allowed to use. By the end of day one, we had a baby for a roommate who cried almost 24 hours a day. Eli had to heal and this seemed to be impossible the first two days.
We were promised a new room, but I didn’t know who it would be with. I told the social worker that it could be anyone but the boy who seems to fight with everyone. We definitely didn’t want him. I can’t have a problem kid with Eli, as he has such a long road ahead of him. The next day, I found out that we were moving but… yup, we were going with the one I didn’t want and we had no choice.
Well, God had plans and his plans aren’t mine so I guess he knew better. We moved in with our roommate and from the first step in the room I felt defeated! Food on the floor, the half filled bottles everywhere, extra food on the bed, I could not imagine how this could work. Not only that, but there were no parents with him, no rules, and not much awareness between right and wrong. This was going to be a nightmare I thought, and it was at first, until I started realizing that I was put in that room for a reason. I might never know the full reason, but I soon would learn, that he needed to be loved, to be seen and he needed to be heard. That’s what I tried to do, and every day I felt more and more thankful that I was there for him. Funny part of the story is, I truly grew to love this young man, care about his life and when I changed, things changed. Not just for him but for ME!
Our nights were spent going on walks to the garden, we would feed the birds and get ice cream. An hour trip around the hospital soon turned into two hours out of our room, walking to the main cafeteria, going outside to chat and get our nightly snack, saying hello to the same people we saw every night and the smiles grew bigger, on both of us.
Eli likes rules, he doesn’t talk back and he knows what is expected of him. The issues in the room were unexpected foreign to him, he didn’t like it. It was challenging to say the least. He would ask to get moved and then we would talk about how maybe we were put together for a reason. We would talk about the fact that we would get to leave soon and I would remind him how many people love him and that not everyone has that, this was just temporary, I would say. These talks would help for a bit, thankfully.
After about a week with our new roommate, the nurses started commenting to me how he was different, he wasn’t as angry. He was easier for the therapists and nurses, and more willing to listen. They wouldn’t even question our escapades anymore as we went around the hospital after therapies were over. We would grab our hall pass and wheel out. Racing down the ramp with our friend Jana and her mom and going to the fountain almost every night. We learned about each other and became friends.
Fast forward to week six, getting read to graduate shortly, we did switch rooms toward the end. We had about a week in another room and it actually worked out, because it was a transition to helping us leave each other. As much as he was dependent on me, I became dependent on him, to let me help him and be there for him.
We continued our dinners together and even went to the cafeteria almost every night the three of us. We knew the guards and they even tried their best to help us find fireworks on the 4th of July. That was our big escape that night, where we left and walked out front of the hospital to watch what came up high enough from behind a building not too far away. It was truly a site to see, not the fireworks but the three of us laughing and making some memories to last a lifetime.
Eric… Eric was our roommate and I grew to love and accept him for who he was, not who I though he should be or how I thought he should act. You are only a product of your environment, Eric, Eli, me, and everyone in the world. We are a product of what we are shown and taught and also the choices that we make … and that doesn’t have to be a bad thing, even when so many things seem stacked against you. I learned from that young man with the not so great environment just how quickly your heart can change and as it is changing, it can also be healing!
So as this 10 year anniversary Diagnosis Day “celebration” is upon us, I am a different person then I was last year, I am filled with gratitude for life, and for “normal” days that we never thought we would have, but just as importantly, I am thankful for the young man Eric, who helped me heal a little more than I would have without him.
Thank you for helping us giveback to those like Eric, because there are many more people and families that need help as well! I hope we can continue to support thosethat need to heal and in doing so WE will no doubt be helping ourselves heal along the way!!
Community helpers giveback Baskets for the nurses and therapists at CHOP
My favorite number has always been four. I was born on the fourth day of November, I had four cabbage patch kids and for as long as I can remember I had always wanted four kids of my own. My only girl was my lucky number four. Four was my “lucky” number I believed for so long, until it became the number that would remind me of how many years I had with my Ella before MLD would change our life forever.
We were walking on the boardwalk this weekend and I saw a little girl walking in front of us about four years old, and a smile came across my face. I remember Ella walking on the boardwalk at that age, her sun kissed hair, chasing her brothers, and jumping over the waves while her fingers were wrapped in mine. Never in my wildest dreams did I ever think that all the dreams and visions I had for her life would soon come to a screeching halt. The peace I felt in those blissful four years would be replaced with an uncertainty that I have yet to recover from.
The course change we have now been on for almost ten years has broken my heart. Dreams look different now, they are mainly filled with asking God to spare her from the same fate as Eli. Visions of her legs continuing to do their job, and a brain that can function well enough to hold a job one day. Hopes of her being able to protect herself from the vulnerability that comes with being a child/teenager dealing with special needs. These are my new dreams.
Ella has her own dreams, dreams that may have looked different if MLD didn’t exist in our world, but I don’t think so. She wants to be a teacher someday. She is great with kids! She is loving and all she wants to do now, is to babysit like most 14 year olds. As I write this with tears in my eyes, I can only hope her dreams come true.
Lately I see more of what this disease has done to her. Not only physically, because that isn’t hard to see, but how it has affected her memory. The things that we did yesterday, sometimes become something that she doesn’t even remember anymore. The simplest of tasks have become a struggle to do without prompting, and the lessons learned in kindergarten through third grade are things that we are continually going over and over again, month after month and now year after year. It’s gut wrenching to witness.
Why has she been born to suffer from this dreadful disease? I will ask myself this question till the day I die. I will also thank God for every day with her, especially those four amazing years where I was filled with blissful hope of what her future life would look like. As much as I thought my vision was perfect back then, I imagine that God has something even grander than my initial dreams planned for my Ella Rose, and one day I will look back to those first four years and realize what I thought, was not even comparable to what HE has planned for her in the years after.
I always used to think of this statement as something that was more based on physical hurt, or inappropriate hurt, I never really thought of it as something that would relate to me because I wasn’t hurting anyone, I was just sad or angry no big deal, but thankfully my eyes are now opened to all the hurt that can be caused due to scars and unresolved emotional pain. Today I found myself hurting my boys with my tongue and to me that is one of the worst hurts. “The tongue has no bones but is strong enough to break a heart” I have lived this quote; knowing its truth as best as possible but sometimes the hurt comes out without you even realizing it.
Today I was hurting and I don’t think I always realize it because it has become a part of me that is always there just waiting for some reason to come out. Growing up in a family that used their words all too often as weapons made me realize that I did not want to live this way. The scars I carry are deep and can not be undone, so as we all so often do, I made a promise to myself to not live this way with my loved ones. That is a promise that I made even before I became a mother and one that I still am cognizant of every single day. The tongue is powerful and the things we speak can only be forgiven, not forgotten. Today my hurt came out in words and I hurt my son. Hurt people, hurt people. Although I am hurting it DOES NOT give me the right to just say what I want and I’m sorry wont change it but I can choose to work on knowing myself well enough to recognize what I am feeling so my hurt does not hurt anyone again.
Fast Forward to a genuine apology, a genuine acceptance, some moments to reflect and life goes on. For me it remains in the back of my head for a day or so because that is just me, the doubter, the over thinker, but also the one that plays on repeat my dad’s words “kids don’t come with instructions”. I look in the mirror, try to forgive myself and get ready for the next hurricane that is coming straight at me.
This hurricane would be my Ella. My heart hurts for her in so many ways but I am not going to lie, my heart hurts for me too. That’s ok, I am allowed to hurt and grieve for my daughter and the losses that she has already suffered due to this horrible disease. Lately I tend to be hurting more and more for her. My baby girl is struggling in so many areas and I can do nothing. I hurt. She hurts. We collide.
The MLD dementia is horrific to live through with her. When she asks me something over and over I just don’t have the patience that I once did. When she can’t find something that she just put down two seconds ago, when she doesn’t remember her friend’s name or her teachers name. When she walks in and doesn’t know if she has homework or how she forgot to bring something home. When she goes into the shower and forgets to rinse her hair. When she texts people too much but can’t bring her phone to school because we can’t afford it to be gone on day one. The outfits that get changed numerous times because she forgets that she just put it on and doesn’t need to change it again. When she seems to be angry 80% of the time anymore and she wont let you love her it hurts. This weekend she was having the biggest breakdown of her life and it broke me because she would not let me love her. She pushed me away and proceeded to be alone in her agonizing thoughts and feelings. There was nothing I could do but hurt. Hurt people, hurt people.
I sit here today, three days later and I am still hurting for her. Obviously part of this is hormonal but it is also part of this disease that is changing her, changing my Ella who at once was filled with so much love for me and back then, I could also take away the pain and the hurt, but not anymore. Now I am forced to sit and watch her continue to be changed by this disease. A change that in my wildest dreams, I never imagined happening. Maybe I am naïve; I think I am, I am.
I am naïve because I see it, I see the disease progression but God, I don’t want to admit it. We wanted a cure, We wanted Ella to have the life that we knew Eli would not get. the “typical” life that we would give anything to go back to, but we can’t. Now we go forward one day at a time into this “new” life, not knowing what’s coming next as far as MLD is concerned.
I want to stay in bed but I cant, I want to drink, but I cant, I want to run away, but I can’t… the fact is, I CAN do any of these but I choose not to, because God allows me to see past the hurt to this beautiful world that we live in, where I am blessed every single day that I wake up to be the mother to these four amazing kids.
My prayers is that God allows my hurt to not hurt anyone along the way but maybe it can help someone recognize how their own hurting can affect others.
Fear Not 