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!!

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!