Jan 4th 2021 – Finding gratitude

•January 6, 2021 • 1 Comment

Finding gratitude is sometimes hard to do every day but I am challenging myself going forward. As the old saying goes – Every day may not be good, but there is something good IN every day.

Today I woke a bit annoyed, I didn’t sleep well and sometimes the day ahead looks daunting. Not just during a pandemic but also dealing with being so much to two kids who realistically should NOT be needing me so much to help with daily life anymore.

One day I would really like to focus on me. Focus on what I WANT to do and focus on helping me become the best me I can be. I never make that time for me and that is completely my fault. At this point in my life I don’t even know what that would look like but I can dream. Maybe I would make a vision board, maybe I would write more, meditate or “get my life together” as I have been told to do. Having two kids with special needs does make this more difficult but no more excuses.

Gratitude – I will choose to be grateful for these difficult times that brought me to where I am today for without them I would not be forced to grow.

This afternoon I heard Eli singing along to the music and I was reminded of the gratitude that I am choosing to see on a daily basis. A smile came across my face and I was brought right to the truth of what matters. Living your best life despite your circumstances. Eli is a pure example of that!!

Life as I know it; day by day – Jan 1st

•January 6, 2021 • 1 Comment

It seems as though we are all still fighting this damn sickness; Cough, sinus issues and a bit wiped out. Nonetheless happy new year and let’s get this year started… hoping only good things ahead!

Breakfast was our normal interesting start to the day with questions to Alexa about movies along with playing Blake Shelton songs. I made crepes and Eli swallowed them with some orange juice which never proves well later in the day. Two hours later Ella told me he threw up so I was off to undress him and get him in the shower. (Ever since chemo he gets terrible reflux with certain things but still wants them once in a while) Eli loves to sit in the shower and just let the water hit him, I imagine like many of us do. I know when I’m in the shower I try to let the water carry away so much that has been weighing me down.

He needs help to get out and get dressed so I always stay nearby for when he’s done. It’s never easy to look at his body when he gets out as there are many emotions. How his legs move him even inches anymore are beyond me. His hips stick out so much and his scoliosis is now becoming more evident. The pain of looking at my precious son whose body should now be that of a maturing man is a challenge. It’s my pain though not his. May I try to never forget that.

I would imagine this year will be much of the same as last year but I MUST try to change how I handle MY own demons and reactions. Drinking and eating to numb can NOT be an option anymore or I won’t make it through.

Maybe writing my pain away will work so I will try that. My hope is to feel more gratitude and joy and that those emotions can live alongside the pain, fear and sorrow. I believe it’s possible as I see so many do it. I want nothing more than that.

Jan 2 – Saturday – Get our shit together

Thankfully we have two more days of no school because that truly can be a shit show for Eli and Ella. The days of sleeping in have been great this past week for everyone! No reminder alarms going off for every class has been heaven!! No more talk about school right now because it gives me agita.

Today was a get this house in order day and boy was it great. The house looks like it did before 4 kids blessed us with their presence (except the laundry room of course) and I hope it stays that way for more than 12 hours. Everything has a home and if we couldn’t find a home it went in the trash. By 4 pm I sat and enjoyed the beauty of an uncluttered  and clean house. Christmas is gone and decorations are away… a clean slate lies ahead and I wonder what will be written on it. May I choose to see things different and may I not project. I believe the slate can be filled with more good than bad but that needs to start with me. I better pull up my big girl panties and try a little harder!!

Tonight Eric and Hayley were here, Evan was home from work and hey it’s Covid so we all stayed in and played Monopoly. A fun, intense (as everything seems to be in the house) board game that lasted for a few hours. I will cherish these memories for sure!

Sunday Jan 3

Tomorrow it is back to normalcy … well, the normal that we have known for the last 10 months, so today will be spent relaxing and getting ready for the week.

Eli is playing Madden and Ella is watching a movie. The big kids are still in bed and it is noon as I write this. Dinner is in the croc pot and my anxiety is starting to ramp up. The week ahead, will it be much of the same? I think there is one thing that is for sure and I have said it over and over … only I have the power to change it.

The night is coming to an end and the new year will be in full swing as school and work are back on the calendar tomorrow.

We had dinner together and as we were finishing Eli asked if he could scratch my back… then he asked me how much money he had in his Venmo. Ha ha!! Yup! He’s a great kid but he is smart and knows I like a good back scratch. He proceeded to slide on over and rub my back (with a reminder to venmo him a couple dollars). I wonder where he comes from but I don’t really care because I am just grateful!

Hallmark is on and the kids are getting ready for bed. Eli will be watching the game and Ella will be in her bed as Eric and Evan are doing their thing. The holiday is over and I am ready for what lies ahead!

Thank you God for getting me through this last year as a mom, caregiver, wife, friend and anxiety filled woman. 

May I keep going One day at time.

For what it’s worth

•December 30, 2020 • 3 Comments

I’m too much of a thinker for this world some days… everything has to have meaning and purpose and if it doesn’t move you in some way, did the moment really matter? Pictures remind me of these questions that I so often ask myself and when I look at them, I find myself going back to those days, wondering if the kids will remember this or that. I remember how hard I tried to make memories with them to remember later on in life, yet many of these memories may remain in the picture. Will they mean anything to them years from now or will they someday shuffle through them with a smile of a distant memory of a childhood where all that mattered to me was that they knew they were loved no matter what.

Today I had the pleasure of going through about 1000 pics that happened to get wet on the basement floor. It was a few hours filled with many emotions. At first tears fell as I saw pics of Eli as a baby… wet and stuck together with pics of Eric and Evan. I saw pics of me as a doting young mom holding them, playing with them and wanting nothing more.

The pictures told a story between the date of the first ones I found ruined to the last. A story or a life well lived…filled with love, happiness and memories galore. There were friends and family, birthday parties, sports, birth pictures, holidays and so much more. A life filled with many moments of smiles to cherish. This was MY life and it was all I had ever hoped for.

Every picture of Eli was before MLD rocked our world so they are the pics that hurt a little more. I cried with the sports pics and cried looking at the pics of him when he was a challenging baby when I didn’t like him too much!! It’s true, there were times that I couldn’t even believe I had a child that was so bad and that cried so much. He was miserable. I always said he seemed like he didn’t want to be here and maybe I was right. It wasn’t until he turned three that it seemed as though he accepted his fate of being stuck here and he finally leg go. He then became the easiest kid…just go with it seemed to be his life motto from here on out.

Pictures allow me to see who I used to be and that is something I can’t even write about at this point. I wish I could go back to those days that I didn’t drown myself and my sorrow with food or drinks or tears. Go back to the days that I didn’t get angry and upset and had more patience, to the days I liked myself more and hated less. I wish I could go back to the girl whose smile in the picture was real and genuine… a natural high found in the joys of mothering and making memories to last even when the pictures fade.

It’s funny, when I go through pics not much comes to my mind but this. I hope my kids know how much they made my dreams come true of being a mom. I hope they know that I tried like hell to give them a good life filled with memories of moments not things.

So even if the pictures fade or get ruined, the memories will remain and for what it’s worth, the greatest gift will also remain. The gift of a life where I was given the honor of walking through your life with every single one of you.

When you can’t look away

•December 1, 2020 • Leave a Comment

Today I find myself wishing for the ability to not see what I see, to not feel what I feel and I pray for the strength to continue to find a way through this pain. The pain that creeps up on you, that you don’t have the ability to escape from …it’s all around you… it IS you.

As of recent we notice some more changes with Eli’s legs. His left leg is looking more like a greater than sign every day. The left knee is coming in so much that it is pretty permanent and only going to get worse. How he holds himself up is beyond me and pretty much nothing less that a miracle. His thin yet miraculous legs that are somehow still able to hold up his body, getting him steps here and steps there… allowing him to jump on his brothers and hobble around the house. We are so grateful for these legs that have carried his body much longer that we ever imagined.

The negative to Eli continuing to use his legs is just that. Every time that his legs have to hold his body, it adds more and more pressure, which in time makes the bending worse, the challenges greater and the pain of watching him struggle even harder.

The thought of watching Eli struggle so much with his ever changing body is daunting enough but then add precious Ella to the mix and there are barely words …just emotions.

Shuffle shuffle…slide slide…followed by a trip here and a trip there. This is what we hear and see when we head to Target or head out for a walk. Her feet are loud and she shuffles with every step. It’s a very subtle yet difficult reminder of living a life with MLD. I don’t want to feel any more. I don’t need any other reminders of how this disease will continue to take from us until it can’t take any more. I don’t want to see any more!

When you walk into a store and you see a young person in a wheelchair you can turn your head, when you see a young girl with feet turned in shuffling as she walks past you, you may wonder why she walks like that and look the other way. You may think for a moment how lucky you are that you are not the woman pushing the child in the wheelchair with the daughter shuffling behind. I get it … this used to be me. If it wasn’t in my world I could turn away.

The gift is … most get to look away. I hate that I can’t look away, that I wonder every day what’s next. Will his leg just break because they can’t hold his body anymore. Then what? What is next with Ella’s feet? Why did this have to happen to her too. Why couldn’t I save her from this? God, I just want to look away but I can’t! It’s happening right in front of my eyes and every day is a reminder of the power of this wicked disease.

I am speaking next week at Accenture and as I was working on the speech I was looking for pictures for the slide show. Eli heard me say that I was looking for the sac race pic from Kindergarten as this is when I knew something was wrong. He looked at me and asked me why I was looking for that picture. I looked over at him and before I could say anything he said “ is that when MLD messed my life up?” I asked him what he meant and he just said “everything was different after that”

I remember how hard it was to look away that field day; I couldn’t …when I knew something was wrong all I could do was watch, wonder and pray. As painful as it was, the watching led me to push for answers, which we ultimately got. Not being able to turn away and ignore what I knew to be true is what I have to believe saved them from being snatched up already from MLD. Going forward my hope is to channel this pain of watching their struggles and pain, to use it to continue to find ways to help them in the future.

As humans we go through so much pain trying to avoid pain but it is a part of life, so I will choose to use the pain as fuel and keep going, no matter how hard.

An army of kindness

•October 24, 2020 • Leave a Comment

Sometimes we don’t realize the gravity of a situation until it has passed. We might not see all the ins and outs or behind the “scene” work that it takes to make something come to fruition because life is quick and it passes us by all too often without much thought. We also may not realize how much something has affected us until we can take time to breathe and soak it all in. These last few days I have been able to soak in the effects of the incredible kindness that has been bestowed upon us the last month and it is truly humbling.

As a mom, hearing that Eli’s number one hero; his go to, who can make any bad day better would be filming not only in our area but in our own back yard I felt a mission that would soon take over my thoughts most of the days and nights ahead! A mission to do whatever I could to make a dream come true. I soon would learn that nothing like this could ever be done alone. It would take an army to make this dream come true and an army is exactly what showed up for us!!

From the first day I shared on FB about Adam Sandler I received an incredible response. Emails, phone calls and messages all saying how they knew someone who knew someone. My heart fluttered at the thought but didn’t want to get too high. Somehow NBC10 got ahold of the story and called me Friday night. At first I heard “hello Becky I am from NBC10 and would like to hear more about Eli and his love for Adam Sandler.” He asked me to email him and I quickly said of course. A few minutes later my phone rang again and this time he said, “instead we would like to do a Skype with you tonight is that ok?” I couldn’t believe it but said yes!! We had our Skype that night and although Eli seemed a bit nervous it was perfect. I shared the story the next day and within a few hours it had 200 shares on FB. I believed Adam would hear all about Eli if he hadn’t already.

By Sunday, Eli’s army was working full time on this and it was surreal. Imagine people that don’t even know you reaching out with possible connections that you never imagined. People that I haven’t talked to since high school willing to do so much to make this happen. People that have followed our journey from day one and those that have just heard about us…All working on One goal, to make Eli’s dream come true. People came out of the woodworks, others took it upon themselves to email his publicist (who probably hates us by now) people emailed co-workers who have family in Hollywood, some contacted people that were working on set, working with his caterers, his security… any way to get to Adam, Eli’s army was on it!!

Sunday evening I got a call from John Bolaris confirming what we were hoping …that something was going to happen. John is working with Adam’s people while he is in town. Although my hopes were up, I still refused to believe.

Later that night we did an update with NBC10 to share how amazing our community has been with trying to make Eli’s dream come true. The excitement was growing and by Monday morning we had hope that Adam would be so sick of hearing about Eli that he would do something just to shut us up!!

Tuesday morning I sent the second letter explaining MLD to Adam’s team. I would imagine they get numerous requests, so they needed to verify that our story was in fact not made up. Within a half an hour I received an email saying that they were in the process of working on something with Adam. Hours later the unthinkable happened and we had a zoom set for the next day!!!

Woo Hoo!!!!! This was such a group effort and there was no way to express our thanks! We shared the news with Eli later that evening and the joy was palpable!!!

Wednesday morning came and we had Eli tell us his favorite movies, movie lines and any questions that he had for Adam. We were prepping him so he didn’t forget anything. I mean this was Adam Sandler … Eli’s hero!!We were told we had maybe 15 minutes with him, so we wanted to be prepared in case Eli was star struck.

We got an email an hour before the scheduled zoom saying that Adam was on lunch now and was ready!! OMG, it was probably better… less time to get nervous.

In about ten minutes we signed on and much to our surprise a familiar face greeted us. Jonathan loughran who most would know by his crazy eye in many of Adam Sandler movies was on the other end of the zoom. He told Eli not to worry that he wasn’t Adam and after dealing with my craziness making sure we could video the zoom, Adam popped into the screen!

After the initial hello, the two of them sounded like they could be best buds. Eli would recite a movie line perfectly and Adam would guess the wrong movie, then Eli would tell him what movie the line was from. This went on until Adam got a Jack and Jill line which he was very happy about. The jokes and movie lines went on and on. He asked us questions and had something funny to say to everyone. He was funny, down to earth, and genuine. Never did he look at the time and every time we thought the time was drawing near the end he kept going. There are no words to describe his kindness to our family and of course to Eli. He was more than we could have ever hoped for. He spent 40 minutes with Eli and every minute was spent well…with laughter and memories to last a lifetime!

Thank you for making this dream a reality. To witness the outpouring of love for Eli and to see so many people genuinely want to see this happen has been such a gift that we will cherish forever. As often as we might feel unworthy of all the kindness and love, we are reminded that this is not about us but about Eli. He is such a special young man who is so deserving and he continues to teach so many about what it really means to live!

Thank you Adam for a day that will bring Eli joy forever!!

PTSD

•August 6, 2020 • Leave a Comment

You don’t know what you don’t know! Thankfully there were things I never had to “know” years ago as I went about my life living as if I was exempt from the sorrows and the trials that only plagued “other families” I never imagined that I could and would soon become a victim of my own mind.

“She was stolen, she is lost, she is being sold, she was hurt, she is dead” It took ten minutes for these thoughts to run through my head when Ella got lost in Italy. She had been under anesthesia an hour prior and was in a stroller in the grocery store because she is disoriented after being sedated. Imagine a grocery store twice the size of Wawa. She must have gotten up when one of us turned to grab some food for the evening and that was it. I thought she was with Hut and he thought she was with me. In a matter of minutes we realized she was nowhere to be found. Almost everything went blank…it was a big fuzz all around me and I couldn’t hear anything but my own voice screaming “Ella!!”

Imagine forgetting how to say daughter in Italian, how to say anything because your mind goes blank, all you can do is scream that your daughter is gone!! We searched the store which took a quick minute and ran outside. People were staring as we were screaming as seconds turned to minutes. The police showed up after about ten minutes asking for pictures of our precious Ella. I couldn’t believe this was happening. Suddenly a crowd drew and we found some amazing people who could speak English. Italian people who became our lifeline with the police and who would become our friends still today.

After 30 minutes I had every worst scenario played out in my head and there was still no Ella. We were almost a mile from our “home” at the hotel so after searching the pond behind the store and the local stores Hut decided to run back to the hotel.

Forty minutes after Ella went missing my phone rang and it was Hut. Ella made it across two bridges, past the pond, up the elevator stopping at the second floor in the hotel to end up going to the fourth floor, walking to the last room on the floor where she sat in front of our door waiting for someone. When he called me I remember falling to my knees unable to talk but only able to cry. Ella was alive and we were granted such a miracle that afternoon when she safely made it alone at 6 years old back to where we would find her.

I knew how lucky we were especially after the police shared with us that just last week a child was taken at the Food Expo in Milan where over 115 countries were participating (where we were supposed to go the following day) As of that day the child was not found.

We went on with our trip and their testing and were eager to get home.

Months go by, maybe years and I never realized how that moment affected me.

The last two years I have started to realize just how much that day has changed my life.

The situations may be small, they may not be worthy of worry but in an instant it takes me back to her being gone and all the terrible things that could happen to her. I remember how these feelings came out early this year when Hut told me the bus passed and Ella did not get off, but the other boy did. I remember not being able to breathe as I watched the seconds tick away on the clock hanging in the kitchen. Did Hut have the wrong bus? Was she late? She is normally home by now. Seconds turned into minutes as I called the school and after what seemed like forever Ms. Finnegan answered and helped me. As she put me on hold, I was texting Kristin, and watching the clock tic… that is when I really knew how NOT normal this was. I was losing my shit and… and nothing! Kristin said Sophia was home so why wasn’t Ella? The anxiety grew until I thought I heard a bus… at the same time Ms. Finnegan came back on the phone and said the driver was running late and she should be home any minute. I apologized first, then I thanked her and hung up.

I didn’t realize how much I was shaking until Ella ran to me like normal and as I hugged her I could feel my body shaking from inside like a cold winter’s day. After getting her safely inside I had to take time to compose myself, but as I did this, so much came rushing back and I realized just how much I was affected by that day years ago in Italy.

Something as simple as putting the kids to bed in one spot and waking at 3 to check on them is normal but for me when someone changes spots, even before I look in other beds my heart races and my mind becomes my enemy sending me to the depths of the darkest possibilities.

This PTSD is every growing unfortunately and it has happened numerous times since the bus incident. It’s horrible and I can’t imagine an end.

I go to bed and pray for those in situations where PTSD takes away your joy, makes you scared and makes you a prisoner in your own mind.

I once said that being a prisoner in my own mind feels like I am being buried, but my dear friend said “Becky maybe you were just being planted and need to bloom”

I pray every day that I get closer to acceptance and healing from all of this and it propels me forward with new lessons learned and growth to be grateful for 💙❤️

Let’s be honest

•August 3, 2020 • Leave a Comment

I hate my life sometimes…I mean doesn’t everyone? I don’t know, maybe its just reserved for people like me who are filled with anxiety and struggle on a daily basis. Having a son who can’t walk is a struggle. It changes everything, so many things that you don’t even realize until it pops up and then you are like “oh shit we can’t do that anymore” The pain is real and it spreads like wildfire.

Having two older typically developing boys I want nothing but the best, most joy filled life for them. I don’t want them to be “stuck” with us not being able to do things, or limited to the amount of things we can actually do, because that simply is not fair for them. This is not THEIR life, it is my life and Hut’s life. Yet, last night when a situation arose it made me hate my circumstances of my life, it made me jealous of the “normal” families and it made me wonder what the purpose in this disease is when it finds so many ways to bring me down, but thankfully I walked out to get some air instead of mowing everyone down due to my own sadness.

My older boys have opportunities this summer to go away for some days with other people and they will go and have a great time. I would never stop them from living because that wold just be plain old selfish. Unfortunately it is not that easy for the rest of us. If I am being honest, I want to go and take them to the beach, or take them to the waterfalls, I want to go back to Dutch Springs, or go out in the ocean and ride waves for hours with them like we did so long ago. I want to LIVE and enjoy these moments with them but when you have a child or two with special needs or who can’t walk anymore suddenly all those things become a distant memory.

I don’t want to be bitter but damn its hard not to feel that way some days. Eric and Evan deserve more…they deserve to be free and not be chained up to going places that only a wheelchair can go. They deserve more and they deserve a mom who is happy that they have other opportunities in life to do things that they simply can’t with us. Please God don’t let me become a bitter woman who pushes people away because of my anger and sadness. Please if there really is a God help me see the purpose in this pain and please let me push Eric and Evan away from these chains into the “normal” life that they should be living and that they so deserve!

The silent thief

•July 19, 2020 • Leave a Comment

23 years sounds like a long time. Almost half of my life… and it seems like forever ago but somehow it also seems like yesterday. Many people might not be able to remember what life was like all those years ago but I do. I do because one day I was “normal” and the next day I wasn’t. A silent thief would invade my life like nothing I could ever imagine and would leave me with only remnants of the young lady I used to be.

As a young married woman, life was easy and fun… not too many worries, or thoughts of the future…just enjoying life. All this changed one day when Hut almost died. He was playing basketball and came in to tell me he was stung by a bee and didn’t feel right. I called his dad and because I didn’t feel comfortable, as he was starting to feel weird, we jumped into his truck and started off to the hospital. Now this is when the bridge was out to Phoenixville so I went the back way. I remember passing the police station and him telling me he couldn’t hear anymore then 30 seconds later he was passed out in the front of the truck. I thought he was dead and drove as fast as possible to my dads right around the corner. I pulled in and honked like crazy. My dad and step-mom came out and after I told him what happened he called 911 immediately. I remember it vividly as he was unconscious and I thought he was gone. Within five minutes Trappe ambulance was there and they stuck epinephrine right into his chest to save his life.

We followed the ambulance to the hospital and while I was in the waiting room, they came out and told me that although things were shutting down at first, he looked like he would make it. They released him in the wee hours of the morning and we ended up at my in-laws just in case anything happened and we needed help.

It was about a week later that Hut went back to work and we tried to move on from that day. For me it never happened. I wouldn’t remember what normal ever felt like again after that night.

One night Shortly after the bee sting I was sitting by the window waiting for him to get home from work, worrying about not being in control of what could happen. I remember feeling better after Hut got home but 30 minutes later I ended up feeling like I was dying. Little did I know I was having my first panic attack and I ended up at the hospital shortly thereafter. My life would never be the same.

23 years later – 100’s of questions; some answered but most not, lessons learned, change, growth, loss, cries to God, doubts, fears, gratitude but no matter what always love.

I will continue to live the questions, hoping to get some answers but accepting the fact that no matter what, I will choose to keep forging ahead as best as I can. This thief; this anxiety, fear or depression has taken so much from my life and might never stop taking but I can try accepting, instead of fighting it…for maybe my success in conquering this will only come with my surrender to it.

Treasured moments

•July 5, 2020 • Leave a Comment

Today was a day that I surely won’t forget for a long time.

Moments come and go, some make you laugh, cry, smile or just make you realize for whatever reason, you won’t forget that moment.

Eight years ago in September Eli and Ella were diagnosed with MLD and eight years ago in August we went on a wonderful vacation with great friends and great memories! One of the memories is the pic below

We went tubing and although Ella was 4 and Eli not quite 7 they did amazing and as you can tell by the smiles, they also had a wonderful time.

After diagnosis I didn’t think too much about this day but when we were around boats here and again, the reminders would come and I would wonder if they would be able to do this again.

Today thanks to our neighbors Jenn and Ron, we had that opportunity!

I went with Ella first, thinking she is strong and should be able to do this! We went up and down the river on the tube as it was being pulled by the jet ski and for some time I felt free… free from my thoughts and anxieties and I was simply in the moment. I have not felt this in a very long time and boy oh boy it will be something I cling to and cherish.

Next came Eli and I think we weren’t sure if one of the boys should go on the back of the ski to make sure we could get him when and if he fell off. I thought we would be fine so away we went. I was super nervous but after the first few seconds I could see the determination in him and the joy in his face. I knew he would hold on for the ride of his life!! We went up and down the river and I would ask him if he was ok and he would say “This is the most awesome day” I said do you want to stop? He said “NO, keep going”! Through the turns I thought for sure he might wipe out but as we spun around to the side he just laughed with his mouth wide open and said “come on mom, can’t you fall off?” I just smiled and thought what a wonderful day!!! As we were pulling in, I let go so he could ride in alone and he loved it!!!

For a few hours today I watched my kids ride up and down the river and the most beautiful thing about it was, they could ALL do it and ALL enjoy it! I can’t remember the last time we left the house and all four could do something together like this!!

My God, the gratitude I felt during those hours was simply something I can’t explain.

Thanks to MLD I have learned to cherish so much more than I probably would without such a diagnosis. I am grateful for that! Moments in life take on a different meaning and things that were once taken for granted are now looked at with a different set of eyes. Eyes that see the gift of today, the no guarantee of tomorrow and the ability to recognize the amazing things that can come from a life changing diagnosis!

The gift of struggle

•June 22, 2020 • 2 Comments

Tonight at dinner, I placed a small Gatorade in front of Eli. Most nights he can open it but some nights he struggles and someone will open it. Tonight as I watched him struggle, Eric went to open it and I asked him to stop… I told Eli to keep trying even though we could see his frustration building. He tried a few more times with all of us chiming in on how to turn the cap before Eric ended up doing it for him. As I watched, it reminded me of how I have always wanted to make things as easy as possible for him/them. It also reminded me of the lessons learned about how struggle can be good and even necessary for growth and change. I have learned that making life easier for someone is not always the best thing.

Sometimes when we look at a butterfly, we forget that it was once a caterpillar. We don’t think of the process that took place for it to become a butterfly. The little insect that we might not give much thought to stuffs itself with leaves until it forms a protective casing. It then transforms its body, eventually emerging as a butterfly. During this process there is a struggle… the butterfly as it gets stronger breaks through the chrysalis to his new life. If you helped the butterfly by breaking away the chrysalis to remove any struggle, it would defeat the purpose and the butterfly might not survive. The struggle in life is sometimes like this and as much as we want to make things easier, it is not always the best thing.

One day about a year ago I was in Wegmans and I had just walked in. I saw an elderly woman shuffling to the bathroom as she got off her scooter. I went to open the door for her and she looked at me and said “no thank you.” At first I felt embarrassed because I was just trying to help but then when I saw her a few minutes later in the produce aisle she looked at me and said ” I need to do things on my own so I can continue to open the door for myself. It’s hard but if I let people do it then I’m afraid I won’t be able to do it anymore.” I said “thank you for saying that as it is an incredible lesson for me to learn”. She smiled and scooted away.

This lesson was brought to the forefront of my mind tonight as Eli was trying to open his Gatorade. I have spent years trying to make not only Eli’s life but all my kids lives easier by lessening the struggles that come their way, by jumping in when I see anything remotely difficult coming their way. I used to equate easy to happy but the fact is that we NEED these struggles in our life, for without them we wouldn’t know what we were truly capable of.

Think of the movie Inside Out. If you haven’t seen it, it is all about emotions but it carries a deeper message. Joy is the main character (emotion) and she tries her hardest to prevent sadness from becoming a core memory for Riley (the young teenager in the movie.) as hard as she tries to stop sadness or struggle if you may from being a part of Riley’s life, she soon learns that there really can be no joy without some sadness. Struggle or sadness; is hard as it is challenging to witness some days… we may want to do everything we can to “fix” it or take it away but the fact is there are amazing things that can come from struggle or sadness.

Without Eli’s struggle he would not be where he is today… if we did everything to make his life “easier” I would imagine his disease would have progressed more than it has. It’s a challenge to put his clothes on, to get on the kitchen chair, to climb into the car and to open a Gatorade bottle but thanks to a lesson learned at Wegmans I now see those “struggles” as opportunities. Opportunities to grow, push and transform into a strength that would not be possible without the struggle!

“Where there is no struggle, there is no strength”