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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Everyday life – post transplant.

•October 20, 2014 • 1 Comment

At almost 17 months post transplant for Eli and almost 9 months for Ella we are getting used to life back home and as normal as it can be.

With Ella being the less affected one before transplant she is definitely the one with the least amount of MLD symptoms. Before heading to Italy we never noticed anything wrong with her and as she was in Pre-school she seemed to be thriving… And as normal as other little kids her age. Now almost 9 months later and here is pretty much a day in the life of Ella.

Ella wakes up pretty moody and we don’t ever know what to expect from her. She eats well which is a huge plus compared to Eli! She absolutely loves Kindergarten and looks forward to school every single day! She has the best teacher… Mrs. Grube …the same one Evan and Eli had. The only thing she wishes she could do is sit crisis cross applesauce…it really bothers her that her legs can’t do that. Right now the only PT Ella is getting is when her legs are rubbed and stretched at home. She is taking lots of vitamins and luckily she has been very healthy post transplant. It’s time for flu shots but she can’t get one until she is at least one year post transplant.

Ella loves to read, do art, and she loves her stuffed animals. She seems to be enjoying life as much as any 6 year old and for that we are very grateful!!! She wants her hair back but soon enough. Eagerly anticipating her one year checkup in Jan to see what her MRI looks like!

Eli is 16 and a half months post transplant! What a blessing to be this far out and to see him running, walking, playing and trying to be as “normal” as he possibly can!

Eli is struggling …things are not easy for him. When we were last in Milan he was falling a lot but I attributed it to the uneven sidewalks in Milan. All the way to the hospital there were many bumps along the way and I had to believe that was the reason for his unattractive bloody knees. I was eagerly anticipating getting home so I could see how he was at home. Thankfully his knees are healed and maybe only a few falls in the last couple of months.

Eli struggles with personal hygiene issues, buttoning his jeans, holding a spoon without spilling his milk…. His temper is not normal for a 9 year old and his emotions are very up and down. The worst part of MLD is Eli realizing that there is something wrong with his brain. I can’t begin to explain how it feels when your son looks at you and says “my brain just doesn’t work like it used to” ” why doesn’t my brain tell me everything anymore?” “Everything is all jumbled up” This is heartbreaking to say the least, especially when there is nothing that can be done.

Eli gets lots of PT and OT, he has an amazing group of teachers and staff at Oaks who are there for him whatever he may need. Eli gets massage two to three times a day with special oil. He gets his skin brushed to help with his nerves and stretching is a must. His heel cords feel much more relaxed than I ever remember. Thank goodness he really has been healthy since transplant and that is such a blessing!!

Focus needs to be kept on the fact that he can still do so much despite his struggles… That we are oh so grateful for Milan and the team of amazing doctors who have taken such good care of us…for Telethon who without them we would never have gotten this opportunity.

The anticipation about waiting for Jan/Feb is hard to contain sometimes. Eli’s 18 month post transplant check up and Ella’s one year! They say hopefully between 6-18 months is when we should see the disease slow down or prayerfully stop! Until then we will keep them as busy as possible and hopefully enjoying life will make the time go fast so not to worry about Milan in Jan!!

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When looking backward gets you nowhere fast

•October 12, 2014 • 2 Comments

They say it all the time… Don’t look back, you can’t change the past, you can only learn from it. I can only hope that one day I can stop looking back, wondering what life would look like if it just kept going as it was.

It’s something that happens often when I see kids Eli or Ella’s age out and about.. Whether in Kohl’s or Wegmans or just at a park with their mom. The sadness that still comes over me is enough to make me frustrated, sorrowful and angry… And it’s been two years!!!

It’s something that happens every time I watch Eli walk down steps …. Watching his little legs wobble wondering how long they will continue to hold him up… Will it be forever or do we have a year?? Why is this even a question that has to be asked or thought of?!! This is when my mind goes back to where it doesn’t belong…. The past, when there was never a question about life and death…. Not a fear of wobbly legs or the trembling of a hand.

I believe everyone deals with things at different times and acceptance comes sooner for some than others. For me… I don’t know if it will ever come. Just typing these words makes me cry because I want to be like the other people I know…. Why can’t I be like them. They seems happy, accepting and have learned to move on and find a balance. Me, not so much.

When all I ever wanted in life was to be a mom it’s hard! Raising kids differently than I was raised, making them never question being loved… Being there for them and loving them unconditionally while helping them to become strong, compassionate caring individuals… This was what I wanted in life. Now it is a struggle to accomplish these things along side of doing everything I can to help prevent disease progression, to try and make every moment memorable and to focus on the present and not the future.

The present is a moment between the past and the future…a place between that not so healthy place to dwell and that place where you can only imagine what will happen next. Every day is an experience to try to learn to stay in that in-between state …may the only time I look back be to continue to help propel me forward.

It’s a sad feeling when there is not much you can do for your child who has a rare disease such as MLD. When you are forced to watch the realities of what the disease can start to do to your child and you are helpless to stop it… This is what real pain is like…a helplessness like no other.

So maybe someday I will accept what is happening to these precious babies and their body…. Maybe I will be able to let go of the dream that I held for so long about what I thought my life would be like and maybe just maybe if I am lucky today will be the worst the disease will get and looking forward will be something to get excited about again!

Learning along the way… One obstacle at a time

•September 24, 2014 • 6 Comments

One month ago today I was in a bad place… My anxiety at an all time high and not feeling it would ever get any better. When would this ever get better? WOULD it ever get better? That night my answer to myself was a resounding NO! No amount of begging, pleading and crying to God was going to make any bit of difference. So I decided to do something way out of the box for me… Something I never thought I could do.

The night started like any other… A glass of wine while I was making dinner and then another small one with dinner. I then had to run to Target to grab something for school. While I was there I started having anxiety and I don’t even know what it was about… Maybe just too much on my mind. It’s a hard thing to explain to anyone who has never been there before because some might say “oh just stop thinking like that” or ” just breathe.” God do I wish it was that easy! This night was bad and only getting worse. The thoughts come and they just keep coming until I have completely made myself nuts. So I came home and poured a half a glass of red and hoped it would go away. It didn’t so I just snuggled with Eli praying to fall asleep and it would be over in the morning. That never happened and I was up all night… Fast heartbeat, skipped beats, dizzy, not being able to focus on anything… The list goes on. After hours of bartering with the God that I was slowly losing faith in, I decided that I needed to be the one who made a change and I decided that night that I would not take a drink for a month.

Now as you can imagine this was a huge promise that I made to myself… One that I tried before but always found an excuse to have just one. I love my red wine and I enjoy two glasses a night before going to bed. This became even a bigger habit in Italy… For obvious reasons:) I never realized that it was a habit that was becoming very hard to break. Now luckily I never had too much where it interfered with my kids or my daily duties… I just enjoyed that bit of relaxation at the end of EVERY day!

The day I chose to stop for a month I really didn’t know if I could do it…and it’s funny because a lot had happened this month. One being my bursa sac in my knee popped and put me out of commission for a while with what I could and could not do. I just tried to take it as a sign to slow down and I did! I knew temptation would be there during the month but I hoped I could rally and say no:) I am here today to say I made it … One month today… Four weeks!

Now I wish I could say life has been great and perfect this last month… Or that I have had no anxiety and sad feelings… Well, I can’t!!! Life is life with or without alcohol and MLD is not going anywhere.

What I can say is I go to bed feeling good,I wake up feeling good, I have been more present, less anxious, more determined and most importantly I believe in myself more now than ever. My kids see it, where before they saw me reach for the wine every night… Or they got it for me:)

I look forward to having a glass of wine soon but I know that things will be different now… I learned I don’t NEED it and I learned how good I can feel both physically and emotionally without.

My job is the hardest and best in the world right now…. Being a mom and teaching my kids about life and about what they can do if they want to. I don’t want to screw it up any more than I already have (in the most loving way of course) I need to help raise four Warriors, four fighters and four kids that know they can do anything they put their mind to! What better way to teach them but to show them!!

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Happy 9th Birthday Eli…my fighter…my hero!

•September 2, 2014 • 5 Comments

Sitting in the Toys R Us parking lot this morning, I was one of four cars and before I realized it I think I had been sitting there for almost a half hour. It’s funny how you can get taken back to a moment in time and get lost in it. Today I went back to where I probably should not go and as I learn every time, it’s not a place you want to get lost for too long.

One day shortly after Eli’s diagnosis we went to CHOP to see a metabolic doctor… we needed confirmation of the diagnosis we received at DuPont. As you can imagine the emotions were high and nerves were shot. After seeing one of the better doctors we were told that most likely Eli did not have MLD. His symptoms did not match what MLD symptoms should be at this point. “There are many other lysosomal storage disorders that it could be.” Off to the lab we went for 11 more vials of blood to find out what disease Eli had since MLD was pretty much ruled out in her mind.

With my nerves a bit calmer and the thoughts that Eli might not be dying from this horrific disease running through my head we were finished up and headed to Toys R Us. This kid definitely deserved a toy!

Those thoughts were short lived as we came out from the store and I hopped into the back seat with Eli…just being closer to him made me feel better. My cell phone rang and it was Dr. Brogan…the blood test they did at DuPont came back and it was most definitely MLD. CRUSHED…. There were no other words to describe as I listened to him on the other line…just an hour earlier they were so confident it was not MLD and now here we were, reality smacking us right in the face. I remember opening up the bag and then his new wrestler…handing it to him as he was just so happy to have a new toy and here I was …his mother …devastated, heartbroken and forever changed…in the Toys R Us parking lot.

It’s not often I go back to this moment but maybe in anticipation of Eli’s Birthday tomorrow I am feeling a bit more emotional…knowing that every single birthday will be just as special as it ever was but now I have learned to cherish it just a bit more.

As my relationship with Eli started rocky (no need for all my Eli supports to chime in here) I would tell anyone and everyone how challenging he was…yup…you were screwed if I ran into you anywhere the first three years of Eli’s life and happen to ask me how he was doing. Most times I am sure I would end up crying and I am sure people learned to go the other way when they would see me in the future. It was not until he was around three that things starting changing and we both began really liking each other. It was great!! The child who I could not figure out was now turning into a kid that had the most contagious laugh, loved to snuggle, and always wanted to pray for people who needed it.

Today things are a lot different with Eli. He is the kid who does things when asked just once …he complains about nothing…works hard for most things that are simple to others…goes with the flow and the list goes on and on. If you know him you know these things are true and more. As his mother I have watched him struggle with so many things and it is not easy. Last week I was looking for a water bottle for school and the first three we found were too hard for him to open. Every new bottle we would try I would watch him to see how he handled it… he never would get upset just realize that he couldn’t do it and he would try his next favorite. No moaning or complaining about not being able to do it or not getting his favorite one…yet there I am hiding the tears in my eyes because my baby boy can’t open a water bottle…IT SUCKS! Yet, he is stronger mentally than I could ever imagine. It’s not fair but this is his life and thank goodness he does not know any different…I do though and boy does it hurt. I never realized that I could feel such a pain without being able to do anything about it.

Tonight I will put any sadness out of my mind when it comes to Eli because tomorrow is his birthday and because today I watched him run off of the bus… into the house, give me a kiss and get himself a snack. What a gift that he is still able to do these things. He is a fighter, a gift, a miracle and he is MY HERO!