Hitting the reset button

•August 15, 2017 • Leave a Comment

I have gotten more used to the unpredictability of life… the not knowing what tomorrow will bring and the idea of "trying " to live more in the moment. It's taught me some amazing lessons but it's also revealed some incredible anxieties within.

It's been a long time since diagnosis… almost five years, which seems so long that you almost forget your life "before". Somedays I welcome that forgetfulness because the pain of "before" can smother me like a blanket; making it hard to breathe or think of anything thing else. It's not healthy and thankfully I know that so it's not too often I allow it.

Today I needed to try to hit the reset button…

Life is overwhelming… Eric is leaving soon for college, the kids are struggling more and some days life just seems to be spinning out of control. The lack of control I seem to have lately is not a good thing, so today for one day or even for an hour I tried to let the lack of control go and I woke the kids and made them all go to church with me. Now of course nothing is that easy at 9 am on a Sunday morning when everyone wants to sleep, but my soul needed my church and I needed my lovely happy children with me. As I was determined to make it on time to get the kids in with their age group we pulled up and I was shocked that it seemed we were late. Well I find out that it must have been awhile since I have been there so now there are only two services on Sunday!! Great… so I make my happy kids wait 45 min with me and to pass time we get some munchkins (because breakfast was promised afterward so we don't want to eat too much). Anyway church was awesome … powerful message that we (Eric and I) needed to hear and Eli and Ella had a blast with their peers while Evan volunteered with the young ones. We went on to have our breakfast and I felt blessed.

During breakfast it was hard to not think About MLD and what it has done to these kids. Eli was so happy because the kids in his group played FIFA with him and per Eli "they were so nice mom… they helped me and they went easy on me this time" I think we heard the same sentence 50-100 times during the hour long breakfast. I don't think he said anything else and I could feel his joy with every word. The frustration builds in the other kids as they are tired of the story and they are annoyed at my overwhelming joy every time he tells me. (Picture 50 First Dates ; which I will add is one of Elis favorite movies) It has to be like the first time he told me. He has some major memory loss issues…sometimes I think just short term but when he still can't tell cousins apart I'm not sure. Ella on the other hand seems to have different issues that bring their own set of challenges. She is 9 going on 7… her temper is terrible… she goes from 0-100 in a few seconds. The envy she has of Eli is extremely apparent and also heartbreaking at times. She wants to be like him, she wants to be as challenged as him so maybe I will care more about her (in her words)

How does one balance life when it becomes so unpredictable? I do my best but it will never be enough… so what is there left to do but try to hit the reset button once in a while and just go with it!

Rare Disease Day

•February 28, 2017 • Leave a Comment

Today is Rare Disease Day.

I read something today on a blog… it was a question asking what we would like someone to know about our rare disease. I find this a very hard question and almost impossible to answer. What could I want you to know when it’s still impossible for me to know everything I would like? What WOULD I want you to know about the rare disease MLD? It’s simple yet could never be understood…. MLD is life changing and that is the only way to put it.

Ella is getting older and wiser… she knows what’s coming now and it’s not always good. The day of her MRI they decided to give her a mask of laughing gas to put her to sleep then put the pic line in to save her from some extra pain. Although this sounded good, it proved otherwise. Ella fought me the whole way down to MRI and when we got there she continued her fight. As I sat down with her on the gurney while the doctors were waiting she was flailing and kicking me to the point I could barely hold her down. She ripped my earings out of my ears and could not control her fear or anger. I had to place my body across her and look away while they put the mask over her face. As she continued to scream until the gas set in, I layed on her lap sobbing almost uncontrollably. She finally fell asleep and I ran as quickly as I could for fresh air; wishing I could keep running away from it all! I hate you MLD. This is rare disease.

By Thursday last week the kids had two tests remaining … We walked down to the cardiologist and Ella hopped up on the table . She had to take off her shirt to get her exam and as she did I was taken back by her precious little body. The first thing I noticed was a bruise on her spine from her lumbar puncture… then I saw the (lead) sticker marks on her chest from her last EKG and EEG, both hands had bruises on them from the blood-work and  gall bladder MRI (where she needed contrast and she had another bruise by her hip from her bone marrow aspiration. Wow! My baby girl … looking like a human pin cushion and the sad thing is this has become so normal and accepted for them/us. This is rare disease.

Eli’s walking is getting worse . Some days it is like watching a train accident occurring in very slow motion. You watch and you know it’s so hard to see what’s happening but you can do NOTHING about it. Imagine that for one second … watching your child lose abilities in slow motion… watching them drag their foot or feet more and more… you can see the marks on their shoe that were never there before as proof that things are not the same but slowly changing. Thankfully the doctors in Italy are trying to figure out if we can do anything for Eli and his legs,  so they suggested a nerve conduction test. Just a few shocks 2-5  or as many as he could stand to help us get some answers. The doctors said it would be up to Eli so I pulled him aside to explain to him what they wanted to do. Eli said “ok mom I will do it”. We met the doctors down stairs and as they put the leads on him my heart started beating faster. My precious Eli is allowing them to shock him to see if he has any conduction in his nerves in his foot or leg. I layed across his body and told him exactly what they were doing. A moment later the first shock… he jumped and after a moment the doctor asked him if we could continue… he said yes. They went down his leg a bit and shocked him again. This one was a bit worse but after a brief rest he said they could go on. After the third or fourth shock he was crying very hard so he decided that would be the last one. Fortunately they got the information that they needed and Eli  would soon move on to a Yahtzee game with Mom-mom; seemingly forgetting about what just happened. Me on the other hand; it’s almost impossible to ever forget. This is rare disease.

They don’t have a “normal” life anymore… Boston and Milan aren’t even questioned …their bodies are violated with needles and testing and you can’t save them. You can’t even really explain it to them because YOU don’t even understand. You can’t explain why Eli can’t run anymore or why he can’t shoot the ball like His friends or why he will never play basketball like his brothers. You can’t explain why he can’t ride his bike or button his pants pr why EVERYTHING in life is just so much harder for him!! You can’t explain why Ella doesn’t want to play sports because she is not “good like her friends” or why she can’t roller skate or dance anymore…. why her numbers and letters are backwards. You can’t explain why she gets so frustrated every time her foot trips over the other one and why her hip hurts. You can’t explain why you want them to never ever give up because they don’t even see that as a possibility. They are fighters and they just keep going. All these things can’t be explained to them because they could never understand. I don’t even understand… except for the fact the MLD has slowly robbed them of things that I would give anything to get back… even for a day.

 

This is rare disease.
Life changing ….That is all that really needs to be known. Having a rare disease will change your life. 

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”