When you don’t (want to)see what’s right in front of your face 

•October 7, 2016 • 2 Comments

Maybe it’s by choice or maybe not… Maybe it’s out of fear or maybe you simply have learned to block things out and only see what you want to see. If one day you see the thing you are most afraid of , then what’s next? To truly open my eyes I have to prepare myself for the reality that might be right in front of me… staring at me… Trying to break me down with every single step.

This week I was playing football with Eli in the backyard and of course he likes to win so that means he has to score… In comes Mom as the steady QB and as Ella quit before we could get the first pass off, Eli was the man! Getting every single handoff or short pass there was. As I Watched him run I felt as though my eyes were being opened for the first time in a while… I could see it all and my heart sank. The yard is not long but Eli would have to run from one end to the other to score and sometimes he would breakaway from me and go the whole length of the yard. On this day he could not make it one time from one end to the other without falling. We kept playing but now each pass or handoff became a check for me to watch every move he was making. Was it his ankles or legs causing this? Was it his muscles becoming weaker or does he just seem to not have that much control over his legs anymore?   I didn’t and still don’t have the answer but I do know that something is different and it’s not what I ever wanted to believe. 

The next day my phone rang at work and it was the nurse…something was wrong with Eli but they couldn’t quite explain it. A teacher saw him having a staring spell then his balance was off and he was stumbling more than ever. This was followed by some confusing statements at recess. Obviously Eli needed to be picked up and checked on. He seemed ok… Maybe a bit slow and his legs were not great but maybe he was just tired. Our minds raced…. What is going on? 

If anyone has been around any of us they hear us tell Eli “Stand up.” It is a statement that repeated maybe 20-30 times a day and it’s a simple reminder for him to straighten his legs as much as he can. I want to scream “Don’t let this disease win!!!” Like he/we/anyone can do anything about it anyway but his legs being bent is something that will continue to make his muscles tighter which will make him bend more…. It is a vicious cycle. The fact is, they hurt…his muscles are tight. He try’s to hard to do everything “right” but It’s not easy and us”willing” this disease to not get any worse is not working. 

So now that I am looking with my eyes wide open, I am questioning everything . One of the biggest things being this “miracle” that we asked for and prayed for. Is it still a miracle if they continue to progress… If Eli can no longer walk will I still believe this is our miracle? Can I get past the anger and sadness of what MLD has already taken and what it might continue to take? And Ella… My precious daughter that I thought we would surely save from this disease… If the disease is progressing in Eli, surely there is a good chance it will in Ella. Her stamina is already worse, her left foot turning in, her hip pain…but I have chosen to believe these things were before GT took over.

Maybe I am a fool… maybe I just can’t bare to see what is really going on or maybe I just wish to continue to believe that MLD will not win against these two! I just know every ankle turn, every hip pain, and every trip and fall makes me question everything…what’s next. 
Everyone says “just live” I get it … I am… We are and they are. I just pray that God gives us the strength to deal with whatever comes next. 

Eli is obsessed with snapchat filters:)

Please pray for his legs… Strength and for us to be doing all we can for him.

Ella running at a fundraiser at school! She did awesome!

The best dog/pillow Ozzy and Eli 

Ella’s 2nd grade school pic

The sacrifice of Thanks 

•March 8, 2016 • Leave a Comment

Two weeks ago I was having a talk with God…trying to figure stuff out that just isn’t meant to be figured out. I was contemplating life, the kids and what I could do for God to let him know that I want to live the plan he has for me. Not my plan but his. Some days this is harder than others but the foundation is the same… My life is not my own.

I picked up my bible ; which was a bit dusty and as I opened it I remembered the question I asked “what sacrifice can I show you that I want you to guide my life?”sure enough the answer was right in front of me… Right on the page I opened …Psalm 50 “the one who offers thanksgiving as a sacrifice glorifies me” I had my answer and I promised myself I would change my thinking to be thankful for as much as I possibly can in my life… Even the bad, sad and things that made me angry I would TRY to be thankful for. 

This has not been easy but the truth is the more you acknowledge and are thankful for the little things, the more things you will notice to be thankful for. Some days I feel so thankful that emotion takes over and I simply can’t believe how many people love these kids. It’s hard to be the recipient of so much goodness and it’s hard to need it. The beauty of it though is simply that… It is a beautiful thing and there will never be an adequate way of expressing how thankful I feel. 

A week and a half ago I was going to my new job at Gymboree which I am so grateful for as I love kids so much and I had about ten minutes till my class started. I got a picture sent to me of the staff of Oaks elementary (Eli and Ella’s school) they had worn their warrior shirts or their Go Shout Love shirts. Now I’m emotional as it is and as the pic came across I lost it. The simplicity of a single picture and what it can mean to someone is just indescribable until you can comprehend the meaning behind it. 

This year is Eli’s last year at Oaks and I could get teary eyed every day I walk into the school. Eli was diagnosed two weeks into first grade and from day one the support and love has been overwhelming from everyone. Really, there are no words just a feeling of  THANKFULLNESS… 

My sacrifice right now is just that… A way to show that I can find somethingto be thankful for even in the midst of sadness and anger… In the middle of terrible anxiety and the face of the unknown. I will be thankful because that is a sacrifice I am choosing to make to show God I want him to guide me. 

When life is so uncertain and you truly live day by day, sometimes it’s hard to find things to get you through. Yet, if you look hard enough at the amazing things that people all around you are doing it makes it all seem worth it. There are some pretty awesome people out there and I am blessed to know a ton. 

When Go Shout Love decided they needed to take a break to regroup, they changed their cover photo for Facebook. Basically with this cover they wanted people to know that #goshoutlove is not a company or an organization it is a MOVEMENT. A movement of shouting love to those who need it… 

Giving thanks and shouting love… What could be more important??

Thank you Oaks for giving us so much to be thankful for and for shouting love for Eli and Ella from day one!! We are so blessed!!!

  

Happiness may not always be a choice but laughter and love can be

•December 29, 2015 • Leave a Comment

I always get annoyed when I read the statement “happiness is a choice” I say BS! I want to be happy … I really do but sometimes I’m not… Sometimes I am sad, angry or just not happy. For the people that can turn their happiness on with a choice even in the midst of the storm around them I say “more power to you”! I may not be great at turning the happiness meter on long term but I do know how to choose laughter and sometimes that is good enough!

 As I am sure it is with everyone, the Holiday can pose more issues than not and we can lose the reason for the season. It saddens me that it becomes about things and not people. It saddens me that every year I say I want to do things different and I don’t. Soon kids will be off to college and my lessons to teach will become less and less. Time goes too fast and we move on to the next thing, event or thing on our list … When we do look back it tends to be the things that don’t always go as planned that we remember the most. 

When you suffer from anxiety you tend to get caught in the past or the future, losing sight of the present moment. Thank goodness for the good things that came from MLD…one being enjoying more of what is in front of me at any given time. Although I still have not perfected this, the kids tend to pull  my focus back to where it should be… Sometimes this may happen in the most unexpected ways like last night.

We were so lucky last night as I got tickets to Disney on Ice for Eli, Ella and I. We were sitting with some teachers from Oaks and I knew this would make them happy! Well, it was a fun night but not quite Eli’s cup of tea… He thought the Flyers were going to come out… He said he would have even been happy with the Sixers! Many times over the two hours we were there he said things that made absolutely no sense. Things I hear every day and just push them aside because I know his brain just works differently than others. He says things that are completely untru yet somewhere in his mind he believes them. It’s sad but I have to push it away and gently bring him back to what really is reality. Thanks to Mrs. Carr (for her gloves) at least his frigid hands warmed up!! He was super happy when it was over ! Ella and I had a really nice time and it will just be the two of us next year;)

As we were leaving, my mind was wondering to Eli; what goes on in his mind, does he know what he doesn’t know, wondering where the things came from that he said while we were watching the show. We get in the car buckle up and start on our way out of the parking lot. Eli is telling me he can’t wait to take his braces off and of course my mind wanders again to his future and things unknown. Within a minute Eli says he has to pee and it brings my attention back to the NOW. Of course he had to pee after I just asked both of them if they had to go before we walked out! I’m stuck In-between cars and can go no where! Now when Eli has to go he means right then. I see a cup and before I grab it I try to help him get his pants down… They were semi nice pants so they were a bit harder to get down and it’s hard for Eli with normal pants. I get one side down with one hand and he is trying so hard to get the other side down. I have one hand on the wheel while I am now hysterical laughing at our predicament knowing what’s coming! You guessed it, I could not pull over in time and he could not get his pants down enough for the cup so he proceeded to pee everywhere. It doesn’t sound pretty but boy was it funny… He got barely any in the cup but he didn’t miss me , the front of the car, the console and of course himself. At the point I could pull over, he was finished and the three of us were in hysterics!! I think we laughed until we got past Manayunk. What a way to get brought back to the present moment and boy did it make me forget about all the things I was thinking about. It also made me realize that Love is more important than happiness… Eli makes me love easier, more and better than I could imagine. He helps me love things that I would never have imagined loving before. I love that I could laugh last night and not be angry or frustrated! All because of him. 

So for me I don’t think it’s as important to always be able to choose happiness as it is to choose love!

I came across this story long before Eli and Ella were even born but it resurfaced recently and I’m glad it did. I will share it here.

Dr. Frank Oski who was the former head of pediatrics at Johns Hopkins for over 30 years, had an experience when he was a resident … He was taking care of a child that was sick and he could do nothing to help the child. He went to bed pondering why this child was going to die. He woke an hour later to a light that was bright like the sun and there was a woman in the light… This is what she told him…(in his words)

“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.”

He went on to say “I will make no attempt to convince you as to the reality of my story. But I would merely ask that you keep an open mind on the mysteries of life which occur to you on a daily basis”

I highlighted what I think is the most important thing for all of us to learn. Learning how to love. 

I am not always happy and I don’t feel I can choose to be happy as much as I would like to but I can choose to love and with love can come laughter even in the midst of the storm. 

 

Life as I know it three years later 

•September 19, 2015 • 6 Comments

“As long as it’s nothing degenerative everything should be fine” these were words I heard from my dear cousin as I was about to drift off to sleep in eager anticipation of Eli’s MRI the next day. This conversation happened three years ago tonight. 

There are certain things you will never foget in life and the next hours fall into that category.

As I woke on the morning of Sept 20th it was with a start from a dream that I just had. Dreams are nothing new or surprising to me because it has always been my bridge between myself and My God. Now this dream was a bit concerning and somewhere in me I knew it carried a message. The dream was simple and quick yet powerful enough and I had a feeling I was being prepared for something, unfortunately it was something that I could have never imagined.

A cross… Up in the corner of where I was looking… A cross but not your typical cross. It was beautiful and made of light just as I believe many spiritual things are. It was not firm and rigid but soft around the edges. This cross was not made of anything but words. Faith, hope, love, promise, life, believe, God, trust, prayer, the list goes on. This cross had words going up and down and left and right… Made of light and almost alive. As I looked at the cross I could see every word individually and in my dream I knew this meant something. When I awoke I knew it was even bigger than what I thought as I was sleeping. As much as I felt prepared that God was in control I could never be completely ready for what lay ahead the rest of the day. 

Everything was normal as Eli was being put to sleep for his MRI. Off to the waiting room we went but all of a sudden the nurses that had been so friendly slowly stopped making eye contact in the waiting room… After two hours they slowly stopped even looking our way as they passed us. These are things I will never forget. I ran outside knowing something must be wrong calling everyone I could to ask them to pray. I was in the middle of a panic attack… Heart rate probably 200 and feeling I would not make it back to the waiting room. Well I did and Hut was much calmer than I was.  As I went to call the doctors office to say I wanted answers before we left she said that the Doctor would be down to talk in just a few minutes. Holy shit! Omg this is effing horrible!! In a few minutes we went back and Eli was still sleeping but there was the poor doctor. A look of “omg how am I going to tell them what I have to tell them?!” She took us in her room and shut the door…. I thought for sure it was a brain tumor but she shook her head no. Then the last words I spoke to my cousin came rushing back…” As long as it’s nothing degenerative” she could barely get it out but eventually said Metachromatic Leukodystrophy. Wtf is that?!!!! All I heard were three things; terminal, no treatment and genetic! There was nothing else to tell us at this point so we went back to Eli who was smiling by now with another nurse and eager to leave. There were no tears to be shed at this point so it was off to the car to head home.  This was just the beginning.
Lots of work would lead us to where we are today… Lots of work and lots of amazing peoole. 

Obviously a lot has happened over the last three years ….. Another diagnosis….marital problems…lost relationships…. Balancing Eric and Evan along the way…Disease Progression ….appointment after appointment… Leg braces….temper problems….numerous trips to Milan…. What seems like struggle after struggle. YET there have been numerous trips to Milan, new relationships, new friendships, laughter, lessons learned, the gift of the present moment and all of these last things mentioned are really the most important. Yes Milan is mentioned twice because it was a challenge for 9 long months living there but it has been a gift that will hopefully keep on giving….. Giving the gift of life to Eli and Ella. 

The reality of where life has gone the last three years, many don’t want to hear…. It’s not fun. Changes in so many areas of life that were never imagined…. But…. More importantly there is also good and I will end on this note ….

I was looking at pictures this past week on my computer I saw a common theme over the last three years. Smiles…. And lots of them. Even in the midst of chemo, the sickness, the time away from family, the isolation days, the lonely days in a hotel room on a 97 degree day where you couldn’t leave, the struggles with school, disease progression, lots of appointments… The list goes on but one thing I saw throughout was joy! Both Eli and Ella smiled, laughed, loved and were loved… They found happiness or joy in the midst of the unthinkable… They found smiles in the simplest of things. This has been a game changer and a life changer from the beginning.  To follow their lead and to try to understand  what they feel has been challenging to say the least but it has been a gift. 

As I was at Evans open house the other night I ran into the Mullens and Jim happen to have a Warrior shirt on…. I could not be more grateful to those that have not forgotten… To those who continue to realize this is a never ending journey… To those who still put their shirt on and even for a second think of Eli or Ella… I can’t thank you enough. This “fight” or “journey” will never end. Eli’s journey in this life is not easy and that is the hardest thing to accept, but with so many people who love him I know he will continue to smile and laugh no matter what comes his way!   

  Three years later ! 
In two short hours after this pic was taken I would learn what true pain was. The innocence of life was stolen … Yet the smiles remain… And  even though some days are tougher than others Eli continues to show the way! 

Breaking the cycle… The relationship between my mom and I and the acceptance that has finally freed me and allowed me to change things for my own kids. 

•July 21, 2015 • 6 Comments

 They say the definition of insanity is doing the same thing over and over expecting different results.  

If that’s the case I am guilty as charged. Guilty of doing the same thing believing the results will… Hmm…let’s see…. Maybe just one time be different. After many many years I have never been correct in my thinking, so I must be insane! After much contemplation I have finally made the decision to break the cycle…. The cycle of insanity! (At lease the part that I can control) 

Mental illness is such a taboo subject yet something that seems to be more and more prevelant every time I turn around. What is mental illness? Is it anxiety? Is it depression? I’m not a doctor so I have no idea but what I do know is it has been a part of my life for what seems like forever! Unfortunately  being who I am I have many times believed that I have been responsible for the issues that I later learned were not really my fault. The pain endured over this has been one of the hardest things in my life to deal with. When someone who is the biggest part of your life growing up says things you tend to believe them… You tend to take it in and start to question what is real and what is not. You beat yourself up thinking you are the worst daughter possible, thinking you have somehow failed, questioning everything you do and wondering if it really IS your fault. It took me a long 42 years …really more likely 20 to finally realize I have to STOP and break the cycle before it repeats itself with my kids…. Which undoubtedly it will.

I have been called everything  you could imagine, I have been told what a horrible person I am and more recently it has continued all the way down to my kids. Now, it doesn’t seem to matter that two of my kids have a terminal illness or that I am barely hanging on by a string in the journey that I am on. None of it matters, nothing changes and no one can change it…. But ME!

If you are  anything like me you might live by guilt… Not wanting to hurt anyone… Making decisions based on what will please others and not you… Let me stop here and say it always catches up to you. 

My decisions seemed to catch up to me after diagnosis…. Ah the wonderful things that can come from the terrible. I became strong(er) I became tough (er) and most importantly I became (am becoming) a woman who can not live a certain way just because of guilt. 

I think because of my relationship with Jesus I have always had this feeling of maybe I don’t forgive enough or maybe I can just keep going and it will get better… How do you quit on family??  

Acceptance does not mean quitting … 

Accepting that it may not all be mental illness…. Maybe it’s just being mean…. Maybe it’s narsacisim at its finest… Who knows. When I see the affects on my kids, I realized that they are not little anymore…. They see it all and they see how I respond. For years I responded the wrong way and I am sure it has done some damage. This solely lies on my shoulders.

I have chosen to finally break the cycle… The cycle of believing things will change and making my kids realize whether there is mental illness or not, there is a line that should not be crossed. They deserve more and so do I. 

“When everything feels like an uphill battle just think of the view from the top”

  

Finding purpose in pain 

•April 7, 2015 • 4 Comments

 

“Mom, I wish I was older than Ethan… Because he says that the older you are the quicker you die and that would mean I can go to heaven” “I want to go to heaven mom to be with Jesus”

The pain of this journey has surpassed anything I could have ever imagined. I have gotten so used to pain and sorrow being a part of my every day that I don’t remember them NOT being there. I know this journey is not about me…I’m just a lucky one who who gets to help help guide them. It’s about these precious kids who deserve life and a life that is lived with joy, happiness and laughter!

How are these things to be maintained when there are so many questions, so much heartache and so many unanswered questions. To hear your child say things such as this is almost unbearable …how it penetrates your soul is unexplainable. Yet when I truly listen, his words can be filled with such depth beauty and wonder.

Since diagnosis I have tried like hell to make the most of the days… Or more importantly the moments in the days… The big and small,  maybe a bit too much. I have become one of those moms you read blogs about and hear yourself say “I will NEVER be like that” “I will not fill their every moment with something to do, and try to make everything special and memorable” the mom that wants to make cookies at every play-date and wants a bucket list for every summer just to “make memories.”

Hearing your son say he wants to die and go to heaven is almost unbearable…so what is there to do but to make life as memorable and enjoyable for him.

Nothing will take the pain away and there will always be questions…. Did the treatment stop the disease? Did it stop and will he be in limbo forever…. Knowing something is wrong, knowing he does not fit in, yet not quite understanding the whys around it. I don’t have these answers and most likely never will… So I will live in limbo with him…. We all will… Praying and hoping there is more understanding as time goes on.

Until then I pray for strength to get through moments like tonight… Strength for clarity and most importantly peace to cover Eli for every question, fear and unknown that he will face throughout his life.

 

I don’t know Eli’s will or what his purpose is… I just know I will feel the pain with him and celebrate the joys. Day by day I am the one who ends up learning from him!

“There is only one thing that is fully our own and that is our will or purpose” -Epictetus 

#100happydays #day1

•February 25, 2015 • 1 Comment

There is a great challenge out there right now to see if we can be happy for 100 days. For me it’s not so much about being happy every day but finding joy and finding moments that give you happiness throughout your day. Sometimes there may be just one but I can guarantee you can find it if you are looking for it!

#day1 is snuggling and falling asleep next to these two

#100happydays 

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Living, learning and loving

•February 22, 2015 • Leave a Comment

Life can and will throw curveballs… It’s a given. Maybe yours will come early, maybe later in life …. Maybe they will be thrown at you as long as you are on this journey called life. Life is never equal or fair and once we realize and accept that we might be able to live the life WE were meant to live.

Ha ha ha … I just re read what I wrote and had to laugh. I may write these words, think them and even believe them but until I can truly accept them as truth it’s just another statement. Maybe someday I will but until then I will continue to press on and learn what I can on this journey, always hoping to improve who I am and how I deal with my own curveballs.

Recently I was in Milan with the kids and Mommom… I had the opportunity to meet so many different families who are struggling with having a child or children with MLD. I didn’t know what to think before meeting everyone… How would I feel? Would it be helpful? would it be sad? It was a lot of everything! It was a gift! MLD is a rare disease … Not cancer and not something you find many other people have. To have met others who are going through the same thing was simply wonderful. Filled with tears and laughter were our moments together.
My heart so heavy for Tyson and Rylee whose hopes were dashed for Gene Therapy and on the flip side feeling so happy to meet the Price Family and see Giovanni four years post transplant (number two in the trial.) We spent hours together …. Dinner, hours on the sofa talking and crying in the hotel and just enjoying being with others who understand. LEARNING …. If you allow yourself, you can learn from everyone that crosses your path. I find myself open to everyone I meet…. Taking it all in … Believing people are put in my life for a reason.

I always believed that people are good! Even the not so good ones are good if they let it come out. I think it helps when you look at the world this way… Believing that if people have the right people around them and can let their guard down the good will shine and the love will be let in. When you believe this, people will show you that you are right. It’s truly what you want to see in the world. People surprise me every day with their kindness. A couple of weeks ago a young boy in Eli’s scouts (Thomas) told his dad he wanted to win a prize for Eli out of the crane game… He did and gave it to him at our Den meeting. It brought tears to my eyes. The school and staff goes above and beyond with their love, care and kindness…the neighbors (Calvarese) who make sure Eli gets across the street when the bus comes if we are not out there, our friends, doctors and nurses in Italy who love the kids and have opened their hearts to all of us. Just one instance today as I took Evan to CHOP after hours for his knee. One or two people there knew Eli and Ella and their story from all the times we have been there and a few didn’t know them yet every single one of them was so kind, caring and compassionate the whole time we were there… Going above and beyond what is expected. They are just another reason why I have so much hope for people. It turns moments into memories when you witness the goodness in people.

I really have to say thank you to those who have allowed me to feel everything I do… To those who know this is a journey and the journey is really just beginning… Eli and Ella are not free of MLD and we don’t know what lies ahead….we do have hope and I do cling to that but I am not naive. I cry, I have sorrow I have fears and I hate how much my life has changed. My faith comes and goes, relationships have been lost and some strengthened. I appreciate those who let me BE and love me anyway. It might only be a few that you realize you can truly be yourself with and I’m learning that’s all I really need!

When tomorrow comes I will try again to live, love and learn…. I will try to focus on what really matters and I will hopefully be a little better at dealing with the curveballs life keeps throwing at me. One thing is true no matter what and that is this…. I will always be grateful for it all… The good, the bad and the ugly …. Because it is here where you learn who you have the capability to become!

“When we long for life without difficulties remember that oaks grow strong in contrary winds and diamonds are made under pressure”

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Please

•February 9, 2015 • 3 Comments

As Eric just turned 16 I look back feeling melancholy. Since MLD I don’t look back too much at the life I used to have… It does no good.l… Yet the pain and sorrow is covered by love and kindness by so many. I wish that helped me as much as everyone wants it to.

I find me being so hard on myself and beating myself up every day…. The “shoulds” that are constantly forming in my mind every time I feel sorrow. I should be grateful, I should be happy, my child could be in a wheelchair already so I should be thanking God every day they are not. The list really goes on but it’s pointless to keep going. Here is the thing… I am all those things BUT I am still in pain and I still have sorrow. Acceptance has not come yet and I don’t know why… Yet I do have an inking as I search every single day to find my own personal truth.

When we are little our dreams are all different … My dream and wish was to always “just” be a mom. I wanted to simply love a child (or 4) and show them that my love was unconditional… I knew that they would be my first priority and they would always know they could count on me. I didn’t plan on MLD… I mean who does? That’s a joke… No one plans on cancer, accidents, rare diseases… We think we will have kids and the big problems will be preventing them from drinking as they get older…. Or worrying about them driving. Never did I think of the possibility that two of them might not even make it to that age. How does one even comprehend that?? It’s better off not to try.

I know today the struggles are not what some with this disease are facing but nonetheless they are struggles. Hearing your son say at least five times a week (sometimes five times a day) that he wants to go to heaven to be with God is gut-wrenching! Somedays we talk about it, somedays I know he is just sad and that is why he says it so I comfort him and other days I change the subject. It’s never easy because I don’t know what is going on in his brain… Neither does he. He says it often that his brain is messed up and doesn’t work like it used to. Just sit with that for a minute. Your son knows that something is wrong with his brain but can do NOTHING about it let alone understand it. I can do NOTHING either and it is painful.

Today I ran into someone and she said “so, are the kids all better now?” Now I know she meant well and I don’t expect anyone to understand but boy do I wish it was that simple; cut and dry. I wish they were “fixed” . If only time could be stopped and they could be little forever…

Here is a great song and I love the lyrics by Billy Dean “let them be little”

Let them be little, ’cause they’re only that way for a while
Give them hope, give them praise, give them love everyday
Let them cry, let them giggle, let them sleep in the middle
Oh, just let them be little

I’ve never felt so much in one little tender touch
I live for those kisses, your prayers and your wishes
Now that you’re teaching me how only a child can see
Tonight while we’re on our knees, all I ask is please”

I love the verses and tonight I will just say that simple prayer…. Please… Hopefully God will know just what I need and answer my prayer.

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A note to me… For you

•November 29, 2014 • 5 Comments

It’s funny when I think back to who I used to be before diagnosis … I used to think I was so different but now it’s hard for me to remember the differences compared to who I am today.

I always thought I was a good person; caring and compassionate. I was not blind to my shortcomings and tried to work on them as often as I could.

There are things I never realized about myself “before” and it’s sad sometimes to think that I never believed in myself like I should have. It’s sad that back then, I needed approval from so many for even the smallest of decisions that I would make… Wondering what so many thought and if I would be hurting feelings along the way. So many things about my life were never really about me but that was my own lesson to learn. You see, I believe we are all here to learn lessons … Some more than others, but if we believe this we can focus on ourselves as individuals.

So before MLD I was insecure, needy of approval, afraid to be assertive and overall just too concerned what everyone thought. I remember an incident during Eli’s MRI that was so poignant to me…When they were taking so long getting back to us and the fear was growing, then eventually they came back and said they needed to do contrast, I knew they found something. I knew I had to call the Dr. Immediately and tell her that we needed to know today what they found and not have to wait. As I was calling her (upstairs in the hospital) I remember thinking that I hope I wasn’t annoying her… That I hoped she understood why I was telling her we needed to know now. I was actually worried about what she thought of me and if she would be upset. Little did I know that she was the one who was waiting to see us as soon as Eli was out.

If I could go back to the young mom (even before Eli was born), the mom who was afraid of anything ever being wrong with one of her kids, the mom who thought she could never handle anything and the mom who thought she would crumble at the slightest inkling of anything seriously being wrong with one of her babies… Actually more importantly if I could get to a mom or dad who thinks these same things today and who doesn’t know it but will face the unimaginable some day, this is what I would tell them:

Don’t believe your negative self talk …you think you know, but rest assured it is true that you are given strength you never knew you had when you need it. No matter how many times you drum up a scary scenario in your mind about your child being sick and no matter how scary that is, you can handle it! It is always worse in your head… Everything is! Don’t worry so much about pleasing people… If you do, you might miss out on something important. (If we listened to some neurologists and were afraid to piss people off Eli would have never gotten that MRI)
Trust your gut… ALWAYS… You can’t get back missed opportunities. Don’t be afraid of life, or death or sickness… It’s ok if something bad happens …good things can and will come of it. Don’t try so hard to hold on to relationships that are not meant to be… Illness or a sick child scares some people and changes some people too. It’s ok because I can tell you that many people who come into your life after a diagnose like this will be some of the best people you could ever imagine meeting. After diagnosis I would tell you to not listen to anyone! Listen to you! Fight the good fight… Just because someone is a doctor does not mean they know what is right for your child! Do your research! Sometimes quality is more important than quantity in terms of time. Accept help…. It’s ok and it does not signal weakness. People will love you harder and longer …. Let them. Don’t be afraid of change… It is inevitable … Friendships will change, you will change, everything will change… It’s ok. Windows will be opened when doors are closed so keep your eyes open and be ready. One of the last and most important things I have learned is don’t compare your child, your disease or the way you are dealing with it to anyone else. There is always going to be someone who is worse off than you or someone who’s situation is not as bad… Don’t compare and don’t feel that you have to be just as happy as them. Be patient with yourself, be patient with others and most importantly LOVE yourself. You will get through anything and everything better once you stop judging yourself and putting unrealistic expectations on yourself. One day at a time and you will be ok.

I am learning to let go of expectations with everything in life and just live… It is truly the only way.

You don’t need a “D” day to realize it’s ok to change and to be who you truly want and need to be. You don’t need something life changing to change your life! Change NOW! Be who you are NOW! Believe in you NOW! Stand up for what you believe in NOW! Life is short so make it count!

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