Is God good all of the time or only when we get what we pray for?

•May 5, 2021 • 1 Comment

Tonight I read a post about a child who was going through a surgery and the author of the post (assuming it was a parent) said their faith has been tested through all of this but thankfully the surgery was a success and God is so so good.

My question is this, is God good because the surgery was a success and life will move on like you expect. Is God good because nothing happened to your child and there were no complications? How often do I read God is so good after a not so good situation, or an ending that is less that we desired? Is God only worthy of praise and being “good” when we get the outcome that we have been on our knees praying for?

In my 48 years on this earth a lot has not gone my way. From as early as I remember I have prayed to be relieved of so many things. Some of course were answered but many are still being prayed for today. That is why that statement has always bothered me – If I only thought God was good when I got what I wanted, then I most likely wouldn’t have a relationship with my God today. People get cured from cancer and God is good, kids recover from the unthinkable and God is so good. I don’t hear too often (although there are some times) how good God (still) is when they lose a child, or when their cancer isn’t gone, what about when their baby is born less than perfect or they are given a life that they just can’t handle? Is God still good or only when the end result suits us?

As I watch Eli lose the ability to hold himself up and walk, as I see Ella’s feet continue to turn in, I know some dark days lie ahead. I know that the light at the end of the tunnel is not a good light but a train coming at us. I know that my tears will continue to be plenty in the future BUT despite this, I also know that God is good!

I remember after the kids were diagnosed I chose to get baptized one day at church. This was before we even knew Milan would see us for an evaluation. I remember sitting in church crying during some sappy song as I did every week, then thinking about my relationship with God. I wondered how I would feel if we would lose both of our kids to this disease and how I would feel about God then. The day I chose to get baptized I chose to believe in God’s plan no matter what. I didn’t want to think God was only good if they would be saved and lived. God was good and this was my way to show not necessarily him but me that I believed in his plan and not just because of what he did or what he was going to do for my family.

I will never understand the why to so many things in life and just this morning I cried to Hut about watching Eli struggle and the pain of helplessness I feel. The knowledge that I will never understand “why” is hard but without a doubt I do believe that there is a bigger plan and purpose that I am just not privy to. More importantly I believe that God is STILL good despite the tears, anguish and pain of watching two of my kids be robbed of the simplest of things.

Maybe you have never needed God like I have. Maybe you have never needed him to help you get through another day just so “hopefully” tomorrow is a better day than the day before. Maybe you have only needed to be on your knees in prayer minimally in the course of your life. If that is the case, count yourself lucky they might say but for me God draws me close through my pain. He knows my heart and has blessed me with so much. I’m not sure if I would see all the blessings without all the pain. I do know that God works through Eli in such a way that I am given what I need and it comes at the perfect time.

For me, God IS good and it’s not contingent on what I am given. I may not understand his ways but I trust in the goodness that I witness on a daily basis, most of which has come from my darkest days.

Surrendering – the greatest gift I can give myself

•February 16, 2021 • 2 Comments

Letting go of my desire to change Eli and Ella or THEIR story has been a struggle that has now spanned years. Trying to fit a square peg into a round hole won’t work no matter how many times you try but the ego tells you to keep trying, keep pushing, until one day you realize that holding on can do more harm than letting go.

Letting go doesn’t mean giving up or giving in. Letting go means surrendering. Surrendering to the unknown and accepting the powerlessness that I have in so many areas of my life. That statement is healing in itself. Surrendering is brave but is something that has scared me for so very long. I have always believed that if I surrendered to what is, that it equated to quitting on them or giving up. In reality, Surrendering only means giving up a power that I thought I had…the power of control. It means giving IN to a life that I was not ready to accept. To accept life on life’s terms and not my own! This is not easy!! To surrender shows strength, bravery and acceptance to live life as it unfolds on life’s terms, despite the pain along the way.

Yet my pain is not What God intended –

Embracing the life in front of me is not easy, even though I am reminded daily of why I MUST continue to accept what IS on a daily basis. Life doesn’t really give us what we want but it finds ways of showing us what we need. This journey is not what I envisioned or thought I NEEDED but I am reminded so often that I don’t have all the answers. The lessons learned and love felt along the way have been priceless!

Eli will most likely never drive or go to college, I don’t know if he will ever feel the excitement of a first kiss or the anticipation of moving out and having a life of his own. Witnessing the changes in his body over the years and knowing it will continue is so crushing. Thankfully, Ella’s future is still up in the air and although we really don’t know what lies ahead for her, we do know as of now she is 12 going on 8. The friendships are almost non existent (so incredibly grateful for what has remained) and watching her slowly progress with this disease is torture. My heart hurts every day!

Watching other parents of special needs kids do it all seemingly with a smile and acceptance makes it hard for me to share my truth and my feelings but I can’t live like that anymore. I love my kids and the gift of life. I cherish all aspects, yet All these things hurt because it’s not what I ever envisioned. It never crossed my mind that I wouldn’t have healthy kids or that they wouldn’t live the typical life that we all don’t give much thought to. You don’t know what you don’t know! I look back now and realize it was a gift to not think my kids would have anything other than a typical life. What do they say? Ignorance is bliss right? Now, every single moment means more than it ever would have meant back then. Once again, not my plans but his.

God had other plans and I love learning to embrace these plans as I grow into the person who is finally letting go of her idea of what life should be like.

I’m so grateful for music as it soothes my soul, reaching a part of me that only music can. This song does just that…taking me to places where I am able to let go of what I thought my ideal life would look like and help me accept the beauty of what is!

Philly for the day and another lesson in never giving up – Jan 10

•January 11, 2021 • Leave a Comment

Today is Sunday and a day with pretty much the same plans as every Sunday lately, which isn’t much!! Since we spend way too much time in the house and Eric and Evan are out till this evening we decided to take a ride!

The original plan that started as a ride to Philly quickly grew to a trip by the Linc, Citizens Bank Park and The Wells Fargo Center. Followed by lunch at Pat’s. As our bellies were now full Eli said it was time to go to the Rocky Steps!! One thing I know is when he wants to do something he will find a way!!!

Not but 10 minutes later our hazards were on as we were parked out in front of the steps. He was eager to get out and as we didn’t plan for this we had no jackets or wheelchair. He grabbed his dads hand and Ella and I were right behind them. He was on a mission and there was no stopping him. I turned on the camera and watched him go. He never stopped and to the contrary he couldn’t wait to get to the top.

Every step…foot by foot, sometimes inch by inch but always forward. At one point the hop in his step was surreal. I never saw such determination in my life. When he got to the top I could see him trying to pull his hand away from his dad. He wanted to shake his fists in the air just like Rocky! He wanted to be like every other person at the top of those steps and feel the excitement of making the “run” all the way to the top!! He did it and he did it with more joy than I imagine most people have!

This is a day I will never forget… his desire and determination from the start, his feet that never gave up and his fists in the air when he made it to the top!

Thank you God for this moment! Some days I wonder what I did to deserve all these beautiful moments and memories to last a lifetime.

Day by day in every way I’m getting better and better – Emile Coue – Jan 6-Jan 9th

•January 11, 2021 • Leave a Comment

I have always loved that quote. I remember saying this over and over, time and again as I went for walks during my horrible days of anxiety. Wanting to believe so much that the next day would be better and so would I. Wanting to be better and be who I feel I was born to be has not been easy, but improving myself is something that has been a desire of mine as long as I can remember. This is the year for that in many different ways.

The last few days have been much of the same which is definitely not bad. Eli and Ella are used to being back at school, I have been working and so has Hut. The big kids are in college virtually and working . They have been so awesome putting up with my Covid craziness of staying home and staying safe. I am so blessed.

Friday we had some visitors… outside of course. Two teachers that Eli was lucky to get to know in 7th grade stopped to give him a present. Ms. C had shirts made for Mr. Dorazio and Eli – “Elif Peanut Butter” which was a name that they made up during lunch due to the fact that it was all Eli ate;) They have their inside jokes which makes everyone around them giggle and Mr. Dorazio has been a part of Eli’s life ever since these fun lunch days in 7th grade. I am reminded so very often of the kindness of people. Kindness doesn’t necessarily mean gift giving but more importantly time, words and love which can be more memorable than things anyway. Our life since diagnosis has been filled with so much of the later that it is indescribable.

Saturday we did our normal cleaning and I have my regular guilt surrounding that as the kids don’t do too much during those hours. Eli cant really walk so we don’t ask him to help much and Ella does her share but that ends fairly quickly. Thankfully for them, the older two are busy with work and such so they are not here this weekend during the day. Sat evening we broke out Monopoly and instead of teams it was all for one! Once again somehow Ella and I were the first ones out… hmm…seems like this is a plan for the boys. After work, Evan joined in the game and got frustrated as Eli and his dad started to kick his ass!! What a great game to teach Eli and Ella about money, to practice reading and the lesson you win some you lose some, although it is always us losing. Ha ha! Eli ended up winning after a three hour round ended after 11:30, but I think his dad was being a bit generous. So much for you win some you lose some. Maybe next time!

All in all a few good days with not many issues. Maybe if I keep trying to focus on the positive it will become what I see more of!

I pray because I simply can’t go on living the life I was. Too much sorrow and sadness, too much numbing and not enough living! We are given this one life as who we are and I surely don’t want to waste any more of it.

Jan 5th – Signs?

•January 6, 2021 • 2 Comments

I suffer from anxiety and more recently also depression. Not sure if one breeds the other or if it’s situational but does it really matter? I will answer with a no, but either way it’s sucks.

To put it plain and simple, it takes you dark places and while you are there it becomes hard to see through that darkness. It makes it hard to see the things you might notice if your weren’t in your own way. Things like signs!

I have spent days and weeks over my lifetime talking to God, looking for signs. When my Nana died, I thought she would be there when I needed her after she was gone. We were so close and for sure she would let me know that all is right in the world. I would beg, Send me signs!! My dad died a few years later and once again I don’t know what I expected but I was hopeful that I would feel him when I needed him. Maybe a sign here and there. I don’t know what I thought as he WAS dead but I had hope. A sign is something that can go a long way to someone with anxiety.

When you get wrapped up in your own anxiousness it’s hard to see much else. Self focus becomes hyper self focus to someone like me. This year will be different I am telling myself! I will work hard and be grateful, I will not beat myself up or believe my own negative self talk. Most importantly I will TRUST! Well, I will TRY to trust. Let’s just say I will trust more than I have. Trust what? Trust in Goodness!

Today was a good day… lots of goodness and a few signs along the way. Not sure what made today any different except my decision to let go, believe and trust in goodness. It’s funny how that’s when the signs came.

I was checking out in Lowe’s ( woo hoo! Lysol jackpot also) after grabbing a lightbulb for Ella’s lava lamp. It was under 10$, I only had cash (one of the kids had my debit card) which is a rarity so I put the $10 in and out came my coins then the register broke. As I had to wait for someone to come help me I had time to look at the coins and the first thing I noticed was I got a bicentennial quarter. I just smiled. I had about five minutes to reflect on my Nana and what those quarters meant to her, how she collected them and how we always would make a big deal out of getting them while she was alive. It was a joy to get one and to feel like she was sending me a sign that I always seem to be looking for. Thanks Nana

Around dinner I had to go to Wegmams and get some food as I do so often. As I was paying, the girl couldn’t scan something so I had to wait a moment which gave me time to stand there while she figured it out. All of the sudden all I could hear was Cat’s in the Cradle over the intercom by Harry Chapin. Now his was my first concert I had ever been to with my dad. Harry Chapin was his favorite and we would listen from the time we were born till the time he died. Another smile grew across my face at the thought of the good times with my dad, the things I miss and the joy of having these two things happen in one day. I walked out to my car with a smile that would carry me through the evening.

Two of my favorite people who are no longer here and two “signs” in a matter of hours. I’d like to believe they were signs so that’s what I will believe.

I will chose to believe that they see me and see my heart. They know my desire to be more than what I am and to turn my mess into my message. So, tonight I am grateful for signs, for my heart is full.

“We don’t see things as they are; we see them as we are.” Anaïs Nin

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!!