It’s ironic because in 20 days we will “celebrate” D day. Celebrate because Eli and Ella are here living their best life possible. September starts Leukodystrophy awareness month, and it’s the month that we first heard the dreadful words Metachromatic Leukodystrophy. This moment I have to say, is the best way to start the month. Seeing our son on this stage smiling for his senior pictures.
Almost 11 years ago we walked into a hospital for an MRI, never imagining that when we walked out, our life would NEVER be the same.
That night of diagnosis, after trying to remember everything that the doctor told us, we went to bed in silence, looking at each other wondering what to say. We never thought we would ever smile or laugh again, let alone sleep through the night.
The most important thing we (thought) we knew, was that we were faced with the fact that there were no real treatments for MLD and definitely no cure. She warned us that without a viable treatment, he would be lucky to see 13.
At 7 years of age we thought we might have 6 years left with Eli, if we were lucky.
A few days later, a chance encounter searching MLD, had me finding a video of Amazing Sam on you tube, who was almost Eli’s age and just diagnosed with MLD. From this video, I found Sam’s mom Jolene, who introduced me on Facebook to a mom who had two kids with MLD, one who recently finished treatment. Amy and her encouragement helped to change my belief about the doctors words that their was nothing we could do to save Eli (and soon enough Ella)
So, today as the tears flowed watching him sit for his senior photos, I couldn’t help but think of the people that played a part in this moment. So many to think of, and be grateful for.
So often, I am reminded of Eli singing while we were in the hospital about never giving up. This song will never leave me, and it has become the song about our journey… their journey. While I sat there today, I heard him in my mind, singing about never giving up, and closed my eyes at the miracle that I was witnessing.
11 years later and none of us ever gave up! We thank God every day for this gift of life!
When a special needs parent thinks of the beginning of the school year, those thoughts can be filled with great anxiety, even more so then typically developing kid parents. Will my child make friends, will my child have anyone to sit with at lunch, will they get made fun of or get laughed at for something they say or do? These things can be normal worries, but for those of us with “special” kids, or kids that struggle with these things, it can be a very nerve wracking time of year. To hear that your child has had a good day or week, to hear that someone was kind, or didn’t laugh when they did something that was embarrassing, this has become my simple wish this year, not just for my kids but all kids.
Don’t just preach the golden rule, live it
Don’t expect your kids to be kind when you are a keyboard warrior talking about other people or making fun of people on social media.
Don’t talk about inclusion, but not teach your children how important it is to those that are NOT included.
Don’t think that just because others walk different, look different or aren’t on your level that they are not worthy of you, your kindness or friendship. (most special kids have gifts that can change your life if you welcome it)
A smile goes a long way to someone who doesn’t have many friends, so does a kind word.
It doesn’t cost anything to be kind.
If you are the planner for activities or spirit weeks at school, try not to pick things that can leave kids out who don’t have friends.
How about using the “buddies” at school a bit further, and have some sign up for lunch duty (for those that are alone) or other places where kids get left out.
My wish is to not hear about my kid or my friends kid sitting alone at lunch… how does that even happen?
I have so many wishes and hopes for this year (as I have every year) and I hope so many of them come to fruition. Funny thing is, they aren’t big, and they don’t take much, but I wonder how many of them will happen.
Please, if you are one of those keyboard warriors making fun of others, please stop.
Live in such a way that all the things you preach are not just words, follow them up with action, and teach your children to do the same.
There can be life benefits for those who choose to see beyond the disability of a child. Benefits that can help you or your child be more understanding of others, learn the power of compassion, and what truly matters. There is value in understanding others, no matter their differences.
I can’t express enough how hard it is to have special needs children. If you have never experienced the anguish of these simple wishes, count yourself lucky. One day it could be you, or someone you love, and then maybe you would understand how something so simple could change the life of a special needs child.
Thanks to Mr. Kinch for the great picture 😍Ella and Chooch
Today I am reminded, just like every other day, that no matter how hard I want something to be different, I can’t wish it that way. I can’t use positive thoughts to make something better, like many think. Some days, when I am feeling like I just can’t control anything anymore, there is nothing to do but let go.
Today as I took the kids out, I couldn’t help but watch Ella walk. Like I have said before, it’s something you can’t help but look at. One foot, then another, her pink sneakers slowly hitting the ground harder than you can imagine. With each step, her toes on one foot barely miss clipping the other foot as she lifts her leg for each step. The anxiety watching every step takes over my body and I go to reach for her hand to give her a safety net as she pulls away.
She is 15, of course she doesn’t want to hold my hand, but it’s the only control I have trying to help her in case she trips. I pulled out my phone to take a short clip of how bad her feet are turning, so I can show the doctor to get ideas to help her. A few seconds in, the front of her feet clip one another, but thankfully she keeps going. It’s become a regular occurrence now unfortunately, even with new shoes, high tops, and of course the dreaded flip flops.
Today was no different than the last weeks have been.
Walking through the outlets this week, we made it about five minutes before the tripping started. The high tops, which were once the best shoes for her, now have become too heavy for her feet and they hit more often than not. After about the fifth time, the tears came, the eye makeup that she barely wears was streaming down her face. As she screamed out, all I could do was pull her close and hug her. I hugged her as she cried and screamed how much she hates herself. Screamed how much she hates her body and what “MLD” has done to her. A hug was all I had in me. I agreed with her and just told her how sorry I was. I wanted to disappear with her and make it all go away but it’s impossible.
I wiped her face, and grabbed her hand. She wasn’t happy but it was the only way I agreed to finish our outlet visit. After the next few clips of her sneakers, the anger and frustration became too much, and it was evident that it was time to go.
Her body is strong and she is fierce, but MLD doesn’t care… it doesn’t go away, or get better as some have asked. It will be here until I no longer am, and it has more control over her body than I care to admit.
When we were recently in Charleston visiting Eric, most days started good, but slowly her body tired. Walking somewhere was on the agenda every day, and although it may not have been far, it didn’t seem to matter much. One block was ok, but anything more than that and her hips would start to hurt. This in turn went to her legs hurting and of course her feet. The anger and frustration came next, which led to my anger and frustration building. It unfortunately affects everyone and before you know it, the day becomes about her struggles.
“At least Eli doesn’t have to walk” is something that she says more often now. Although it’s a sad statement and also can make us anger quickly, to her I believe it means, “ Eli doesn’t complain, because you are pushing him in a wheelchair, there is nothing for him to complain about.” I can now understand why some days she says she wishes she was in a wheelchair, no pushing her to do more, no sneakers crossing over and less uncomfortable.
People think gene therapy is the answer and tell me how lucky we are, but there is more to the story. Gene therapy is what I believe to be a cure, when you have no symptoms, unfortunately this was not OUR story. Now Eli AND Ella will be trapped in their less than perfect body AND mind. I am so sorry this is their story. Every day I am sorry!
I’m not sure what the future holds, but none of us do. What I do know is that I think it’s time to start letting go as best as I can. Jesus (for me) is the only way I can let go, and let him take over because I simply can’t keep fighting against a battle that I will never win.
Relaxing, swimming, playing basketball in the pool and just being together, that was the gist of our Fourth of July this year. Waiting for the sun to set to enjoy the fireworks, knowing that it is a gift that we are all home together today. As the games and sun tired you out, along with the long week of emotions, as family gathered to wish you good luck on your new adventure, you took a break and laid down. A few minutes later I peeked over the sofa and you were peacefully sleeping. A tear came to my eyes and the peacefulness took me back in time, as you lie sleeping.
Time flies they say, and we all know it to be true. We do our best to savor the moments that will soon turn into memories. Good memories that were made from good moments. Some memories we don’t like to think about too often, or talk about, but they come from a place that lies deep within all of us, and affects us differently. Then, we have the core memories that seem to be made from the good, the bad, and also the unspoken; the moments that we could never fully express, because they could only be lived.
The funny thing about memories, is sometimes they feel like yesterday, and other times they feel like years ago. Today it was like a flashback to everything. I closed my eyes and in my minds eye, the man who was on the sofa right now, was suddenly the 10 month old drinking a bottle with his Eagles outfit on as we rooted on our Birds. The little boy I strapped to me, as I walked circles in the living room listening to Michael Buble trying to get him to go to sleep. The memories flooded me of endless readings of Goodnight Moon, pausing after each page waiting for him to say what was next. The overwhelming feeling of love that I had watching him learn and grow, under this roof we have remained under for his whole life… PRICELESS!!!
I felt like this flashback lasted forever but I’m sure it was only momentary. Looking at him, feeling sad that he had to grow up quicker than most, missing out on the “typical” teenage years, adjusting to his “new”relationship with Eli and Ella. Being thrust into becoming more resilient, more reliant on himself during the months and years where it should have been different. Somehow I have blamed myself for many of the things that changed in his life after that dreaded diagnosis day, but as my dad used to say “kids don’t come with instructions” and I’m sure as hell positive that parenting four kids, (two who are living with a disease such as MLD) didn’t come with instructions either.
Eric held it all together for years, he did good in school, had nice friends, graduated Spring-Ford making us proud. He continued his education at West Chester where he suffered a great loss of a dear friend, saw all the changes that were happening with Eli and still graduated from college on time! He somehow did it all, and always made us proud.
During Covid, he came home and did college remotely as to help protect Eli and Ella from getting sick. He knew what was best for our family, and didn’t complain. We had some amazing and memorable days, weeks and months together. Moments that have become part of my core memories that I will cherish forever, and I hope they have done the same for him.
I could go on and on about our son Eric, because there are so many things that I am proud of, but I will finish with the type of brother he is to Eli and Ella.
Branded with the title of a special needs sibling, must carry a lot of added weight. Possible Guilt of being healthy, feeling sad for them, maybe envy of all the time and attention they got. I’m sure many moments sucked! The list could go on because none of it has been easy, yet you would never know that with Eric. He has treated Eli and Ella as typically as he has treated Evan over the years. The wresting, video games, and wiffle ball games. The nicknames that we all have. (Eric is the best at picking nick names) Eric has treated them better than I could have ever hoped, and they surely are better people for having him as a brother.
As Eric is leaving Sunday to embark on a new chapter of his life, (Act 2 I will call it) he will be moving 11 hours away, and I can’t help but feel sad. He will be missed more than any of us could imagine at this moment. There is no good time to say farewell, but the joy of being able to watch him spread his wings, brings a smile to my face. Being proud of him for LIVING his life, is an understatement! LIVING is a gift that not everyone receives, and I hope and pray that he lives his life to the fullest. Somehow, I know he will!
The gift of him taking that nap on the sofa, has brought back to me so many memories to be thankful for, and I will draw on them in the upcoming days and weeks without him, thanking God for the gift of Eric!
It was never WHAT he did, but HOW he did it, that makes me the most proud!
“ I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be. “ – Robert Munch
I have been a mom for 24 years now and for most of those years I have believed that being their mom was my greatest accomplishment. The dream of becoming a mom was something that I envisioned for a long time before they were born. The love that I had to share with a child, my child, that would always be a part of me, was something that no one could take away. I have been blessed.
Life happens, things change… those things then change YOU! After Eli and Ella were diagnosed, I changed. How could I not? The woman who was 39 at the time of diagnosis would soon turn 48 and wonder where that carefree woman was before diagnosis. How did these last few years pass in a blink with me just “existing”, or not FEELING? The only answer I had was ME!
Simply existing had to stop, and next week, on July 4, it will be two and a half years celebrating a different kind of life lived. The cessation of using using alcohol to cope with my feelings, my sorrow and my sadness.
Some people would say that they drank what I drank. A few glasses of wine at night, maybe more on the weekend. It’s a common thing. Have a glass of wine on a lunch date, maybe another while you are making dinner. It’s easy to finish a small bottle in a day. No big deal right? A lot of people do it right? It may have taken me a while to learn and accept, but it’s not about anyone else but ME!
The early morning 3 am rousing from sleep because alcohol refused to let me sleep through the night, the promises to myself that tomorrow would be different… until it wasn’t. The scary thoughts that ran through my head during those middle of the night minutes that eventually turned into hours. The fears that I wouldn’t make it much longer if I kept on this path. The pain that the glass or two of wine helped mask, soon escalated and eventually nothing would stop the inner critic telling me that “I suck” “you will never change” “the pain will never go away” “you deserve this” “it’s not worth it.” I could write a book about these 3 am thoughts! The thoughts would then linger in my head during the day. The intrusiveness was so evident, and life altering that it was hard to stop. It started to become a regular game that I would play with myself. Putting a smile on my face, but underneath I was slowly dying. Wondering how long I could go on like this.
Personally, I never hit a “rock bottom” or had that defining moment to say “What the hell are you doing ?” For me it was never about getting a DUI, drinking in the morning or drinking and driving, because I never did those things. For me it was what alcohol did TO me when no one was looking.
It’s hard to change, but it’s necessary for growth. No one said it would be easy, and I know firsthand that life is not easy. To quit numbing my sorrow was hard. FEELING is hard! So many emotions to deal with, but soon I would grow to be proud of how far I had come and my newfound freedom from alcohol would slowly become my greatest accomplishment. My superpower!
Two and a half years without stuffing my feelingsso deep inside like they didn’t exist. Yes, I am proud of me and it’s a great feat, especially in a world where alcohol is a part of everything we do, but I am not here to judge anyone or their journey. I am grateful to have changed, but the pain and sorrow are still there. In fact, maybe more so now they seem to be front and center. There is no hiding it anymore. I fight through many sad moments but, I cherish every day and thank God for his protection and lessons along the way.
Today when I wake up and the inner critics voice is getting softer, I can’t help but acknowledge that not giving up or giving in when you want nothing more than that, is the most beautiful gift you can give yourself and those that love you.
Not numbing with alcohol has changed me! I never imagined getting stronger, but stronger I am, every single day that I choose not to drink.
I know that I am not alone, but most people don’t like to talk about it. I am NOT most people. I have shared since the beginning of this journey and it helps me stay accountable.
As a new part of my journey will be starting soon as Eric moves away to start his own life, I can’t help but think of all the time we have had the last two and a half years. All the nights where we stayed up playing games, laughing, watching tv and just being present. I may have had all these incredible moments with my kids while I was still having my nightly wine, but I may have fallen asleep early, or forgotten what we talked about. I may have chosen to say things that could be hurtful, or I could have continued to choose to drink to not feel. I didn’t!
When I reflect on these months and now years, I am in awe of what I have accomplished. It has been HARD, but it has been so incredibly worth it!
Laying my head down to go to bed looks different these days. I can write or watch tv, I can stay up late and watch a movie or listen to a meditation. Regardless of what I do, I am living in the moment, and know that nothing will take away this feeling of accomplishment!
“I understood myself only after I destroyed myself. And only in the process of fixing myself, did I know who I really was “ – Sade Andria Zabala
The last week of school we were driving to school and Eli was expressing to Ella how different he felt compared to his peers. God bless Ella, and I can still see her little finger waving in the air as she stated to Eli “don’t ever call us different, MLD doesn’t make us different, we are UNIQUE!! “ Then she proceeded to shush him saying anything other then that the rest of the ride. I was so proud of her and drove to school quietly with a smile across my face.
Ella recently went to Dorney Park on her end of the year 8th grade field trip. I met her and her small group there to spend the day together. As we started deciding what rides were first, we saw many of the 8th graders running around with their friends as we stayed with Ella’s learning support friends/class. It was a day that started with me wondering if she would want to be with her other peers that she saw freely running from ride to ride, to a day of me being so incredibly thankful to have been with the group we were with.
If you have never witnessed complete freedom in a 13-15 year old child you are missing out. Freedom from what they look like, who they are hanging out with, and freedom to be just who they are. This was my most favorite part of the day, watching these kids do things with no wonder or worry about what anyone else thought. They played in the water together like a bunch of kids without a worry. Went on rides together supporting and encouraging their classmates. They are accepted for who they are and it showed that day! No judgement! Another moment that will stand out, was watching the teachers with them. You rarely get to see the side of teachers that we saw that day, but we were lucky and were able to see their joy in helping the kids, going on the rides with them and also seeing a guard lowered, because that is what these special kids do! They help turn you into the best version of yourself if you allow them! That is what I witnessed!
So today, in an email, the school sent out pictures that were taken at the Jr. Prom. There were quite a few good ones of Eli with his friends. They gave me the biggest smile looking at him on the dance floor with no reservations or worry about what others thought. He clearly was just living in the moment, enjoying his Prom. No worries, as Eli would say.
They will always be unique as Ella put it, and I believe through their uniqueness they will continue to teach lessons about life, and love to those they have the pleasure of crossing paths with in this lifetime.
I hope that everyone gets the chance to befriend someone special or unique, and see their differences as a gift, realizing there can be so much to learn, and so many smiles waiting for you if you are only open to it.
I will never forget reading this quote from Dr. Frank Oski in a book called Parting Visions years before the kids were diagnosed. This is just part of the quote but it has always stayed with me… even more so the last eleven years.
As a medical student Oski was enthusiastic about the potential of modern medicine, but frustrated by the fact that children die of congenital defects that are beyond anyone’s control. One night he went to bed pondering the fate of a dying patient. Although he was doing his best, the child was not improving. He felt powerless to help and went to sleep wondering why this child had to die. About an hour after falling asleep Oski was awakened by a bright light, one that shone in his room like a private sun. Oski could make out the form of a woman in the glow of the intense light. She had wings on her back and was approximately twenty years old.
In a quiet and reassuring voice the woman explained to the speechless Oski why it was that children had to die: “The angel (I don’t know what else to call her) said that life is an endless cycle of improvements and that humans are not perfect yet. She said that most people have this secret revealed to them when they die, but that handicapped children often know this and endure their problems without complaining because they know that their burdens will pass. Some of these children, she said, have even been given the challenge of teaching the rest of us how to love. It stretches our own humanity to love a child who is less than perfect,” said the angel. “And that is an important lesson for us.”
I will choose to believe that this is just a part of their purpose here, and I believe that they are fulfilling that purpose in all that they do! Being UNIQUE every single day!!
“What sets you apart can sometimes feel like a burden, and it’s not. And a lot of the time, it’s what makes you great.” – Emma Stone
If I close my eyes, I can be right back to the room, laying with Eli in bed trying to calm his anger and moodiness. I can see a team of people walking in through the double doors with a briefcase in hand. A briefcase that held a large syringe filled with Eli’s new cells. A syringe that would take less than an hour to slowly empty through Eli’s port. A pizza party ensued and then the waiting began.
I’m sure Hut and I both remember the day vividly, the day that we believed Eli’s life would be spared from succumbing to the horrific disease known as MLD. Sharing laughter and tears, but most of all gratitude!
I went to bed last night pondering on the last ten years and the gift that we have received with gene therapy. Every year hits me different and this one has me thinking not just about Eli but about Eric and Evan.
As I was with Ella at her field trip to Dorney Park yesterday, it hit me that this is how old Eric was, when Eli was diagnosed and went through treatment. 8th grade! Evan was in 6th. Some of the same teachers that Ella has, Eric had as well. I can only imagine how hard it was for them watching from afar as their brother then sister went through something that we couldn’t even comprehend.
Their lives were changed in so many ways when the kids were diagnosed and as I remember back to the day we shared with them about Eli’s MLD diagnosis. I remember thinking how in the world can these boys go living a “typical” life knowing that their brother might not have many years to live… then their sister also. As hard as it must have been, they have done an incredible job, and I believe Hut and I did an amazing job being honest with them about everything, living in the moment and teaching them that today is the only day that matters.
Thankfully over the last ten years we have been able to make numerous memories, watch them ALL grow up into wonderful human beings, and the best part has been watching them treat Eli like they did before MLD. Playing sports, wrestling with him and of course getting pissed off at him. (Come on Roman Reigns, can you please lose) They have NEVER felt sorry for him more than a handful of times in the last ten years, which makes me so proud!! I believe that they have learned so much about life… pain, grief, joy and most of all never giving up!! Thankfully, I believe all these lessons will be with them forever.
Today we celebrate Eli! We celebrate the scientists, doctors, nurses who have made this second chance at life a reality. We thank them all, along with our family, friends and community of supporters for lifting us up when we simply didn’t know how to keep going. One foot in front of the other, one day at a time… it’s the only way and it’s how we got where we are today, ten years later!!!
To Eric and Evan, there are no words to ever express how sorry we are for the ways that your life has changed, but we know one thing, and that is Eli would not be who he is today without YOU!!!
Ten years of not thinking about time, when at the beginning that is all we thought about. How much time do we have left with them? Thanks to gene therapy, we don’t think about time as much anymore, at least not in the way we did back then. Eli is now a senior! God willing, next year we will watch him walk across that stage and get his diploma! A day that we never imagined happening almost 11 years ago when he was diagnosed with MLD!!
There are days you can instantly draw to the forefront of your mind, and you can remember every little detail about that day. It might be the outfit you were wearing, the weather, or maybe you can still hear the ringing of the phone. Then comes the event that changes you on a dime and suddenly you have a snapshot of everything that day… forever…It becomes etched in your mind and it becomes unforgettable!.
Ten years ago today, we were all in the house, the weather was crisp, as the sun was shining. We had only gotten their blood drawn a few days before to test the other three kids for MLD, so I was not expecting it to be CHOP when the phone rang. One of the boys answered and I saw the look of Eric’s face like “mom, it’s CHOP” I took the phone and I could tell she had me on speaker which I knew wasn’t good. She said all the testing was back and that Eric and Evan were carriers. At that moment timed slowed as I suddenly knew what was coming. She said she was sorry but Ella also had MLD. I remember hearing her continue to talk but I wasn’t interested, as my ears were full of ringing, like suddenly everything was going to go black or blank. I couldn’t think so I passed the phone off, and I walked out.
I didn’t know what I was going to do in those next few moments, everything was a blur. My heart seemed to explode with sadness at the thought of losing two of my kids.
Ella was four, so she didn’t understand, but when we did tell her later that day, she seemed excited that her and Eli both had it.
It makes me wonder if she somehow knew this was part of her plan, if she made a contract with God before coming to earth to fulfill her mission and be one of the ones to help this trial for MLD. I would like to believe that she knew this life would be a challenge, but the people she would touch and the lessons learned, by her, and through her would all be for growth, eventually working for good in the end.
Although I like to believe this, it’s hard not to be reminded daily how this disease has changed her. Her brain, her feet, her hips and her walking. Some days I feel that she has early dementia. The friendly reminders that turn into frustration, the showers that have to get re-done to fix what was missed. The list unfortunately goes on and on.
My daughter that I prayed for, that I dreamed of making things right with, being excited to teach her to drive and someday watch get married…MY DAUGHTER…although many of these things might not come to fruition, I am slowing learning to accept that, BUT will continue to pray and believe that the joy will still be there, just in different ways.
To be honest, my heart breaks every day and if you don’t know, then you could never possibly understand the feeling. I try and I try, I pray and I ask God every day to guide me. It’s hard to believe we have come so far, yet still feel the same in so many ways.
My daughter, I will love you through it all, the good and the bad, the scary and the unknown. I will thank God every day that although our journey might not be what I thought, I can promise you, that the days ahead, whether good or challenging, will be filled with unconditional love, patience and gratitude,) I am so grateful that God chose me for you… no matter what!
Cheers to 10 years of living your best life, making memories, loving hard, but most of all cheers to me being allowed to love you, to be your mom. My Ella Rose, one of my greatest joys!
Keep believing and kicking MLD to the curb! We all love you!!
Imagine having a friend from the time you were born, or a friend from kindergarten that you grew up playing baseball with, did slip and slides with and spent numerous hours with doing typical friend stuff. I would imagine it’s a great feeling, at least it has been for me, as I have watched my boys as they grew up, having this throughout their life. Now imagine your best friend gets “sick”, gets diagnosed with a disease that no one knows much about. A disease that would take him out of the country for a year, and more weeks over the next ten years. During that time, your friend is going through some of the hardest days of his young life, with his mind and body. Your journey thankfully continues on the typical trajectory of growing up, trying to figure out this life and slowly maturing as you are getting closer to adulthood. You are on the path that most get to take, but unfortunately that friend who you you grew up with and made a million memories with, seems to be “stuck” at a certain point, both mentally and physically, but more mentally. I imagine that must be really hard. To watch your friend take a different path, as the distance between you two becomes greater by the months and years. I would imagine it hurts and maybe you don’t even know it hurts but it’s different, and different can be scary, it can be filed with many unanswerable questions. I personally, would like to believe the love and friendship is still there but it is different… how can it not be. It’s ok, you are not alone as we are all hurting about what once was.
A couple weeks ago I reached out to Ethan and Chase asking them if they could take Eli to school one day before the end of the school year. I mean let’s face it, it can’t be that much fun getting dropped off every day by your mom, especially when she asks annoying questions and sings off key the whole way there. The boys were very responsive and we picked today as the day that Eli would go with his friends to school!!!
I felt like a little kid this morning! I woke late and quickly remembered they were getting him! As I jumped up out of bed, I ran to tell him that he has a special ride to school today! He greeted me in typical Eli fashion, never too high or low, but he was excited. The boys were here a few minutes later and I watched them get out of their car to help Eli. I couldn’t help but smile with a tear in my eye. Something so simple as a ride to school would make Eli’s day, and mine too!!!
I imagine this is how it would be daily if he was “typical” but he’s not and that’s ok. He’s better than typical and he’s ours forever.
I recently got some good advice when none of Ella’s “friends” invited her to their house before the dance. A teacher expressed that she is loved and cared about, but there is almost no way possible for other kids her age to understand compassion and empathy at this age. (Although parents can) It opened my eyes a bit more to the truths of how their disease not only affects us, but others as well. Mr. Kinch also would go on about Eli’s friends, and expressing to me that he thought it might be harder for Eli’s friends then I realized. How did I never think of this? Maybe I was so wrapped up in my sorrow, that I never put myself I their shoes… I will try to do better.
So, today when they arrived to get Eli, I not only saw the boys that were all once really great buds, but I saw the young men, that they have grown up to become, and for a second I realized that I am not the only one who has been challenged over the years watching this diagnosis change him. I think we are more alike then I realized.
For so very long I have focused too much energy on what Eli has missed out on since MLD has changed him. It’s hard, and it feels like a weight sitting on my chest, more times then I would care to admit. I never really thought of how it affected others outside of our family. I never thought that these boys who were such a huge part of his life could have gone through their own hurt or confusion over the years about what was happening or how to treat Eli. How to move forward with their friendship, when he seems to stay still. Friends who once scootered around the block together, are now driving aroundthat same block, Eli can just watch from afar as their life goes on doing things that typical developing kids normally do. Yet, I’m sure it has affected them too! I’m sorry I didn’t recognize this sooner. I have loved one since birth and the other not long after when the boys met in kindergarten.
After school they texted to see if they could also bring him home which I was thrilled about. As they drove home listening to rap music (one of Eli’s favorites) they decided to stop at Wendy’s for a frosty, capping off the day in the best way! When I walked in the door from getting Ella, I walked right down to his room, and saw a big smile on his face. He told me that it was a great day being with his buddies and he hopes to do it again sometime. When we went to bed that night, we said a prayer of thanks to God for this special memory and a prayer of thanks for Ethan and Chase. Of course it was Eli’s idea, which is just another reason that he is so incredibly special.
I thank Mr. Kinch and Ash for helping me to see things a bit different, for helping me realize that this journey of life we are on is about learning and loving it all. For growth doesn’t happen when things are always as we want them to be, but in those moments that we are challenged to change and grow THROUGH them.
I believe that life doesn’t happen to us, but for us. It’s what we do with it that matters.
Sunday morning pancakes were what was on the menu today. I don’t always make breakfast, but it was a day where we had some time before the kids were off to youth group and the others were headed out to golf, so pancakes it was.
Sometimes you have a moment that takes you back to a memory from your past. Today it was pancakes. Only one kind of pancakes will do though, as it’s all I have ever known. Aunt Jemima pancakes. Not the “complete” ones where you just add water, but the ones where you add the egg, oil and milk. Actually growing up it was often the frozen 12 Oz box of pre made Aunt Jemima pancakes. When I was with my dad on the weekend, this was often a staple. He was single for years and this was the breakfast of choice most weekends. A little thawing, shake of the box, and simply pour, cook and eat. They were delicious, or maybe they weren’t but it’s all we knew so it worked!!
It’s been almost 12 years since my dad has been gone, and I often think back to those last weeks with him. We found out he had lung cancer in mid Jan of 2012 and he passed Feb 10 the same year. A few short weeks we had to make memories, say what we needed, and try to heal any hurts that we might have been living with. I truly believed that in this time, we would make amends for anything left out in limbo and end things on a positive if that was possible.
Unfortunately things don’t always turn out like we hope, and this was one of those situations. I remember a lot in those three weeks we had before he passed away, and one in particular, I’m sure will stay with me for a lifetime.
My dad moved to hospice about a week before he passed and it was a great place, filled with his friends coming and going, along with my step-mom who never left his side. They had been married for 27 years then, and had a strong and beautiful relationship. He was lucky to have found her all those years ago.
In the evening of Feb 6th, I was in my dads room and it had been just the two of us. I was talking about life and savoring every minute. He was getting uncomfortable and had asked me to go get him a pillow out of the car, but before I did, I wanted to finish the conversation we were having. We had been talking about how we were all going to move on without him. How would it feel and would he let us know he was with us when he was gone. He really thought we would all be sad for a bit but “you will be ok” (his words) I will never forget the next thing he said when he looked at me, “you know who I am really worried about?” I said “who dad?” He then said my stepsister. I couldn’t believe those words came out of his mouth and clearly I was taken back and upset, so I walked out to get the pillow. When I came back in, a friend was now there, so we didn’t talk much, but I asked if I could have a minute of his time. I expressed how much that hurt me, whether right or wrong and he went on to give the reason or excuse that he said it. It was in these moments that I knew I had to get a flight home the next day to surprise Eric for his birthday. You see my dad lived in Florida and I had spent the last three weeks flying back and forth with my brothers and stepsister to spend time together. That night, I called Hut and asked him to book me a flight home in the morning. Not knowing how long he had, but knowing it was time for me to be with my family, he booked the flight. That would be the last time that I saw my dad alive and able to talk with me. I went home in the morning to see Eric, and later that day my dad slipped into a coma for the next two and a half days before passing away. We did thankfully make it back on Feb 9th before he left for his next journey in the wee morning hours of Feb 10th.
I have thought about that a lot over the years, wondering why this would be this way we would end things face to face. Of course when I left, I love yous were said and there was no bad blood, not knowing if I would ever see him again, but damn did it hurt. I think unfortunately that is just part of the price we pay sometimes when we come from a divorced family, but hell, it is what it is.
I find that this moment is also one of the reasons why I choose to work on my marriage, talk to my kids as much as I do, and always let them know just how important they are, because you just never know when it could be too late.
Some memories can haunt you, but they don’t have to. You can revisit them, but i think if it’s a tough memory, it’s only important to do so, when you are trying to use it as a catalyst for change.
My life is full of those moments that have propelled me into growth and change. I believe power and strength has come from those moments that I once thought would break me. Emotional wounds just like physical wounds, can leave their own type of scar tissue, BUT just as scar tissue is stronger than regular tissue, I am stronger as well!!!
Fear Not 