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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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!