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. 💗

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!!!

💙💗

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. 💗

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!

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.

Healing all around

•September 15, 2022 • Leave a Comment

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 those that 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

Laundry giveback

Four

•August 25, 2022 • 2 Comments

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.

Continue reading ‘Four’

Hurt people, hurt people

•September 21, 2021 • 4 Comments

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.

A change of perspective

•August 11, 2021 • 1 Comment

The thoughts of the future are daunting sometimes, or most of the time when I think of what’s to come with Eli and Ella and MLD. Many parents or caregivers of a special needs child will go through these same thoughts and fears. If you allow it, it will eat you up while robbing you of the joys of today. These thoughts, unfortunately have been something that have taken over me in the past and they have thrown me into deep and dark places. Fortunately we don’t have to stay where we are forever and we can choose to work hard to better ourselves every day. I am slowly learning to live in today while cherishing the memories of yesterday all while trying not to anticipate what tomorrow will bring. It can be a challenge, but when you succeed, you find that there can be just as much joy, if not more in store for you. Living in today has also helped me change my perspective, which in turn is helping me change my life.

Some before and after, eye opening changes of perspective haven’t come easy but they have come from a heart that has been hardened and then softened again thanks to the beauty of imperfection and living a life that I am choosing to embrace no matter what tomorrow may bring. Finding messages and meaning in my mess is a gift.

Eli can’t clean himself properly without help – I GET to help Eli make sure his body is clean, while cherishing the gift of gratitude for his feet that still work and his hands that can still do so many things. I get to look at his sweet face while he allows me to shave his mustache. I notice his skin and ever changing facial structure as he turns more into a young man. When I put cream on his legs after the shower, I close my eyes and thank God for what he can still do. I notice his biceps on his thin arms that still allow him to fight with his brothers, play his video games, feed himself, play with his wrestlers and so much more. Although his toes overlap and his legs are more disfigured, somehow God allows him to push though, and I thank him for every working body part. I thank God that Eli loves his life. I also thank God for letting me find so much good in a situation that has broken me over and over time and again.

I HAVE to be their best friend every day – I GET to do EVERYHTING with them. Most days start with jokes and Alexa humor at breakfast…they don’t mind me being there helping them as we plan out the day. When they want to go for a walk, ride a bike or go swimming, I get to do it with them, I get to hear their joys and pains every day. I am blessed to be able to be that person that they want to talk to, watch movies with, joke with, lip sync with, do tik tok’s with, play baseball and minigolf with. I rarely miss out on anything BECAUSE i get to do it all with them.

They just want ME when anything goes wrong – When they are sick I STILL get to snuggle them, I get to sleep in their room, watch movies, bring them food and whatever they need until they are better. When Eli feels unwell, he doesn’t mind me sleeping in his room (at just about 16 years old) to make sure he isn’t having any issues. When Ella just had Covid, I got to sleep in her room every night, making sure I could take care of whatever she needed.

They look to me for many things and I am blessed to be able to be that person for them. The sad parts will always be there, but with the help of God, and continually working on myself, I am slowly learning that a change of perspective is all you need sometimes to realize just how lucky you are.

Continue reading ‘A change of perspective’

When love hurts

•August 2, 2021 • 1 Comment

As a parent or simply as a woman, I’ve been labeled an empath, or a person who feels others emotions, someone who feels maybe even too much. I’ve always known that being this type of person can get me into emotional trouble but I never realized just how much it can actually hurt, when feeling what someone else is going through. The physical effects of love are well known; when you love deeply you physically feel different. Your stomach might hurt, you can’t sleep, your mind is racing but these same feelings are felt when you hurt BECAUSE of love. To hurt for someone you love has been the most painful experience in my life so far. I have begged, pleaded and cried out to God to help me not feel so much. Unfortunately, that prayer continually goes unanswered, yet I still choose to trust him.

Where do you draw the line between loving someone, and wanting the best for them, trying to do whatever you can to make their life as happy and fulfilled as it can be, opposed to just loving them and letting life happen, let it be what it was meant to be? I don’t know how to do the later but I wake up trying every day.

I’m not quite sure what my role is supposed to be other than mother in my children’s lives, but I do know I ask God every day what he wants me to do. I know it may not be natural to be your child’s best friend, or go to person that they spend almost all the time with but when you have a special needs child, the line is not drawn quite as clear as it is with a typically developing child. I do know that I will do whatever it takes to make sure they are never alone (yes, I know its ok to be alone sometimes and they should be) and always have someone to do their favorite things with.

I find myself holding my breath every time Ella walks in Target, hoping she doesn’t trip. I love her so much and would give anything to go back to the carefree days of her running through the stores and me having to yell at her to slow down. Life has turned into me watching every move, Hut telling her “back to front, back to front” in hopes that she can not trip. I love her so much and it hurts that much more because of my love for her.

I’m envious of the ease of friendships that girls Ella’s age seem to have have, choosing which friend they will text or hang out with. Yes, I’m angry, jealous and envious. Somedays it feels so unnatural to feel these things especially when I continually give my life and questions to God every day, but I am human and I’m not perfect. Ella turned 13 on vacation and I think she has two friends phone numbers in her phone. Why?!! Because she doesn’t have more than one or two friends or a group of friends and It hurts so much, yet it’s probably more painful for me than her, at least I hope that’s the case.

It’s August 2nd and school is starting soon. I dread it! The boys who were once Eli’s friends have moved on to other things and people. He’s well known in school and loved but the minute he steps through the front door, I become his best friend again. I have many roles in Eli’s life and as much as I enjoy every one, it’s just not natural. It’s not the way things should be! I fear I’m headed down the same path with Ella. This summer has been spent with me being her “person” every day. I pray when she goes back to school, she finds some friends that can relate to her, some girls that want to text and call her. I want nothing more than my Ella to find someone who enjoys her as much as she enjoys them. I want to hear her phone go off with a text, I want her to be invited somewhere. It hurts even typing these words and if you have never felt this type of hurt for your child then consider yourself blessed.

I dread school because she is changing, her walking is noticeably different now. I watched her walk as I took her into school for PT and OT at the end of the year. I saw the kids as they got off the bus looking at her walking. I hope she doesn’t notice. I will take this pain over and over if God keeps her heart and mind shielded from any differences that people may see in her. I ask Hut how he does it… “how does it not affect you like it does me?” He tells me he wouldn’t look, he tells me he wouldn’t think about it. I guess it’s a blessing that he can do that… maybe someday I will get there.

Sept is coming, Eli will be 16! He talks about getting his drivers license all the time. I/we just smile or say “I know”, what else can you say? Girlfriends would be in his future, friendships, sports if he wanted, driving, independence and more. We might not have any of this but we will have Eli and that is the most important thing. I know that is the most important thing and I do know how lucky we are (I hear it often) but that does not take the pain away. That does not make this any easier. Love hurts.

Loving someone and watching them go through things that you have no control over is one of the hardest things you can do. Although there is pain in not being able to change things, there is also beauty to be found. Learning to trust God and his plan is a choice that needs to be made every single day. It is a continuous choice of believing that he will take this pain and use it for something greater.

“A lot of things broke my heart, but fixed my vision”