Fear Not

I remember when I was younger and I would be visiting my Nana and Poppop…as it was time to go I would often say “ok, so I will see you at this or that” and my Nana would reply “Lord Willing”. Now as a young adult I would just smile and feel how cool it was that they really thought that way. They never seemed to plan much but would always believe if it was in their plan then they would be there. I never really appreciated the truth to their words until I got older and realized that there are no givens in life. Planning is great yet sometimes the plan will take a different form than the one you had in your mind.

Today I learned that my mom will not be going to Milan with me. It was sad to hear this yet I know it is for good reasons so I have to just go with the flow. My mom needs surgery ASAP to fix an obstructive hernia (post whipple). All the planning she did for the last two months to prepare is now unnecessary. The lists for the lists and the phone calls to make sure she has the right things for Milan mean nothing now. There is another plan…not the one we thought but if we can believe there is a BIG plan then there is something else at work. Thankfully I have the best Mother-In-law who is ready to go…no questions asked.
Ultimately everything that happens in life has a plan surrounding it and I know at the moment it is hard to see but somehow, some way we eventually can look back and see it unfold.

As I started 8th grade it was also the start of school number 8. I remember the fear and anxiety that came with it and the idea of meeting new friends again seemed a daunting task. I think at this point in my life I was my own worst enemy. Only now can I have compassion for that young girl who beat herself up daily not thinking she was good enough to make new friends or not believing she was worthy. It is amazing how I never thought I could get through those tough times and yet somehow I did. Thank God I did not believe the things I told myself and just kept going. There had to be a reason and a plan for me.

When I felt the pain in my chest and my heart racing like I just ran a race I knew something was wrong…after a trip to the ER I learned I had a panic attack. NOT FUN and not something I would wish on my worst enemy. After spending the next 6 months trying to figure out how to get through this nightmare (without drugs) I finally figured it out. I once again was torturing myself. I had beat myself up and told myself I could never get through this and that I was so messed up (putting it kindly) . All negative self-talk…and to anyone who has had anxiety they know EXACTLY what I am talking about. I did not want to go through this…it was not fair and I did not know how I would ever come out of it. 18 months later Eric was born and my SLOW journey to believing something good would come out of this started to unfold.

Almost 15 years since Eric was born and probably 7 since conquering my anxiety on my own…problems come and go lessons are learned and self-acceptance is becoming more a part of my life. The older I get the more I see that all of my life is un-plan able. Flash back to Jan of 2012…finding out my dad had lung cancer and losing him a month later. Just as I am dealing with losing my dad, the biggest blow of my life is right around the corner…Sept 2012 Eli was diagnosed and we were told he will not live long. I vividly remember thinking “there is no way I am going to get through this” This is every parent’s worst nightmare …and me “I’m not strong “ I would tell myself. “There is no way I can do this… I’ll just quit” “Yeah right. How could there possibly be a plan in all of this”

All I can say today… a year and almost four months into this journey… is I truly believe that there IS a reason and a plan for all of this. For everything good that has come from this and everything that is not so good coming from this situation… there is something in the works that we just might not see today. We might not realize it until much later on but I believe the good things will far outweigh the bad and continue longer than I realize. The only reason I believe this is because I know God has a plan for me.

I have been given a gift of raising four awesome kids. It may not be the plan that I had thought of when I was a young mom but I am going to try to learn not to question it. It is a true blessing to not be so set on what I thought my life should be like but to be open to what might lie ahead.

Posted in Diagnosed

Have you ever thought that life is a set of choices? I don’t mean choices about college, love, where to work and so on. I mean choices about either choosing the high road or the low road…the wide or the narrow way. I think many if not all of us go through life and barely give it a second thought because we just REACT.

Picture this… Everything in life happens for a reason…every person you meet, place you go, or situation that arises is meant for you. You are given so many different opportunities to see what you are made of and who you are. How will you choose or respond? What road will you take? I am not going to sit here and say we all need to be perfect because there is no such thing. What I am saying is have you ever contemplated life and how the decisions you make affect others? Have you ever thought that the typical way we respond to people most of the time comes from our ego…from our fear of being vulnerable?

If God allows certain things to happen to us or certain situations into our life it may not always be about “us” it may partly be about all the other people surrounding us. How will they respond? What if with every situation we have 10 different ways to react…1 being the most selfishly and 10 being the most “Christ like”. What if this time here on earth is truly a school to learn lessons and do the best we can…how will you fare? Now that is not for me to judge but what I want to share is this…It is OK to be vulnerable, it is o.k. to say I am sorry, it is o.k. to be wrong and it is o.k. to express these things. What are we hiding behind? How many times have you done something where you think you may have reacted too quickly…then you feel bad or act like “oh well it was their fault anyway” then blow it off. Why oh why is it so easy for so many of us to keep that guard up…the guard of “well I am not giving in, or it’s not all me so I am not worrying about it” I wonder this so often … I also wonder if every one of us had one day where we could see how our actions or reactions to people affected others. If you could see how the quick smart comment you just spewed out of your mouth (or in this day and age a txt or email) changed that other persons day would you still say it? Or would you think how you could have approached it differently? Go back to yesterday or the day before and find something that you are not happy about how you reacted…how do you think that may have affected the other person? Maybe your reaction was a 4 out of 10 and you learned something from the issue but if you would have chosen a different reaction you could have learned even more. We all have so many opportunities to act more “Christ like” and let that guard down, forgive, or maybe just to think before we act.

I have to say it is not much fun needing people…I never thought in a million years that I would have to rely on people or need people for help as much as I do. Although if I look at it differently, instead of being sad about all the help we need maybe I should look at it like this. Our crazy, unique and sad situation has brought out so much good in so many people that we know and even more that we don’t know …and maybe just maybe that is all part of the plan. Maybe it’s not just about MLD and Milan… there is so much more and I witness it every day! The amazing things that people have done for us, the love that so many show toward us and the people that are there through it all.

I hope not one of you ever feels helpless like we have…I hope not one of you needs the support from people that we have needed and if you have made it through life so far without needing others count yourself blessed.

As I was on the phone yesterday, I was speaking of a sadness that is deep inside of me…a sadness that just seems to come from the sensitive, emotional person that I am. I was focused on all the wrong things at that moment …just then there was a knock at my door. It was my friend Laura…she knows I love her cookies and she stopped by with a card and cookies just to brighten our day. To me that was a big slap in the face from God…”look Becky, don’t focus on the ones who miss the opportunities, who fail to see life outside of their own little box” “focus on the ones that are right in front of you and have been from the beginning.” I learned a valuable lesson yesterday and it has changed my thinking. The thing with lessons is you have to be open to them… try it…it just may change your life…or maybe you can change someone else’s life.

Posted in Diagnosed

The excitement in Eli seemed to mirror the excitement I was feeling. As I watched him with a Little Smiles Stars Ball book opening it to the page with his picture, getting ready to sign his first autograph of the evening I watched as he opened his sharpie and put a big E over his picture. I watched him and fought back the tears that wanted to flow freely about so many things but at this particular moment it was from watching his little hand shake as he held the pen. The whole reason I/we believed something was not right in the beginning has now become even more prominent and a reminder of this horrible disease that we are fighting. IT SUCKS!!!!

As we finished a wonderful evening to honor some amazing children we knew we had to get some sleep for the MAW walk this morning. What a wonderful showing by some of our amazing family and friends. To be there to walk with us as we try to give something back to a wonderful organization that has given us so much…so many memories that hopefully will live on for a very long time. A young adult wish recipient spoke about what MAW means to her and her family…how she is so grateful and how she will work volunteering for MAW as long as she can! I really hope someday Eli AND Ella can share their experience of what their wish was and how MAW made that come true. The truth is we just don’t know and we might never know so it is just another opportunity to live in the present moment and try not to think of the future.

While I try to live in the present moment there are many reminders in the present moment of things Eli just can’t do like kids his age. After the walk I dropped Evan at baseball practice. When I pulled in we went past Elis age group and I can’t help but wish he was out there playing. Fact is, he is just not strong enough…truth again is I don’t know if he will ever play again. Maybe he will be the kid that parents feel sorry for …maybe he will think he is better than he is because he gets treated differently or maybe he will realize that he just can’t keep up with everyone else. Sometimes he asks me but mostly Hut “Will I be on the All Star Team like Eric and Evan” What we both say is “work hard and keep getting stronger” …we have to believe WITH him…no matter how hard of a stretch it is TO believe.

There is a song by Pink…Beam Me Up… I am sure most people have heard of it. It is a great song that I love but there are a few lines that really move me. “Beam me up, let me be lighter, I’m tired of being a fighter, I think a minute’s enough, just beam me up” This line particularly speaks volumes. It can be so tiring being a fighter…fighting the disease, fighting my emotions, more importantly fighting to try to find peace, joy and light on the days when darkness seems to overpower everything. Maybe that minute…if it could ever happen, would be enough to recharge to just keep on keeping on…or as my brothers and I used to say as my dad was dying …Just keep swimming (in our best Dory voice)

So today we got really great news…finding out when Ella will be treated!! We also found out that Elis marrow looks good and the enzyme that he was lacking is now in his body at almost 3x the amount of normal! Simply wonderful news!! It is just so nice to have a plan. As I have had the day now to think about the news and feel everything that comes with it I can honestly say that the feelings are so mixed. There are good and bad things about knowing what to expect when we go back …I think they both are obvious what they are but some are worse than others. The thought of Ella turning into a semi monster from anti-seizure drugs just makes me sick to my stomach and the picture that is in my mind of her little bald head is just something I almost can’t fathom. Sometimes I beat myself up thinking these things are trivial but I will acknowledge how I feel and try not to fight it.

Maybe one day God will beam me up, give me a minute and I will ask him why…then maybe he will give me the strength I need to keep going because I am sure I could never understand his answer anyway. Until that day I will just have faith that SOMEDAY …YES SOMEDAY I will know why and this will all make sense.

Elisabeth Kubler-Ross …”People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in; their true beauty is revealed only if there is a light from within.”

Posted in Diagnosed

It seems like yesterday when I called home to tell Eli’s dad and brothers that he was “the best one yet!” As he was laying across me as calm as could be and nursed like it was nothing new I truly felt like the world was his. I remember calling Aunt Jennifer and Nana saying “He is so pretty…not cute or handsome but such a pretty baby” These blissful feelings did not last long because before I knew it we were home and he was a handful (putting it nicely) “I wonder if there is something wrong with him”

You may have heard this before but Eli and I did not seem to “like” each other much in the beginning months. He always seemed to be uncomfortable or just not happy. Now of course I loved him but boy oh boy did my friends and family hear my every complaint about him. Thank God for him, most of them were on his side;) It’s funny because out of all the moms I knew, I never really heard them complain like this but I guess you could say wearing my feelings on my sleeve has always been my way of living. I always thought to embrace it all. Whether the truth was not the “typical” thing or not… it was what it was. I remember many different times running into people in random places like the grocery store, or a restaurant and as they would say how is Eli doing I would lose it! I would completely understand if people would walk the other way when they saw me because I would have too…maybe. “ I really think something is just not right but what could it be?”

As Eli turned three, things really turned around for us. We started to have this cool bond and we both seemed to really love each other:) He did not seem as frustrated as he once did but nonetheless that feeling of questioning grew and I could never quite pinpoint why. “I know something is wrong…this is crazy!”

After many doctor visits and more questions about why he could not figure out how to ride a bike or why things seemed so challenging to him we finally got our answer…MLD. Now obviously a lot more happened in between the age of three and diagnosis but the most important thing is we finally had an answer. I finally felt that everything I had felt for all those years, all the questions I had asked myself over and over were finally answered. Not quite in the way that I had hoped but at least there was an answer.

As I have been thinking of Eli’s upcoming Birthday during the last week my emotions have been a bit more intense than normal. Any picture PRE-MLD has almost torn me apart. The kids that I see in Target or really anywhere who are the same age of Eli or Ella just throw me into sadness. Although the only difference is I know that I don’t know their story I only know what I think I know. Meaning I don’t judge that this is a “healthy” child anymore because you just don’t know. I try to remember that and move on.

There are times I wish Eli was older so he could understand the depths of my love for him and how he truly is my hero. It’s a great thing that he cannot fully grasp the severity of MLD but some days I wish he understood how truly amazing he is. Someday maybe he can look back and see how he changed me and my view of what a TRUE HERO really is.

Eli…As our journey together seemed to start a bit on the challenging side the love was always there. Somehow God gave me the ability to be intuitive to you, your body and some of the things that were going on with you. I have cried many times in the last 8 years for different reasons about you but today I am thankful for those tears. Those tears led me to trust in myself, trust in you and to push for where we are today. Every time I start to think of the last year and what you have been through I have to stop and fight away the tears. No child should have to go through what you have gone through yet someday you will understand how lucky you are to have had this opportunity.

When I thing back a few short months to our time in Milan I want you to know as your mom that it was the most painful thing I watched you go through. From needles, port needle changes, minor surgeries, heavy dose chemotherapy, the anti-seizure drugs which I won’t even approach the sadness that came from those drugs, all the other meds you had to take, 45 days in the “BOX”…the days of mucositis where you could not eat or swallow and really all you could do was drool. This is a pain I hope you will never remember. Honestly I think that one thing that never caused you any physical pain but caused me pain for you was the fact that you were so compliant! You were so amazing and for the most part never gave the doctors or nurses any problems and you were so sweet that the majority of them really fell in love with you. I remember many moments when your personal privacy was not yours anymore and you just went along with it all so well. During some of these of these moments I would quietly hide a tear or two because, well… I just felt sad for this. That was not the only time that I hid tears as it became quite common as you had to have your needle changed, when you would yell at me that this was my entire fault or when it took me two hours to get you to take your meds. Many tears were hidden but if you caught me crying that compassionate side of you would come out and you might give me a hug or even just a smile would make it all better. Not to mention all the hugs I got from the various amazing doctors and nurses who would come in and tell me that this is all normal and it will all be ok. It will be O.K. Eli…no matter what because you are amazing and I could have never have imagined showing so much bravery in such a challenging situation. You are a true hero!!!

So on the eve of your Birthday as I type this you are snuggled up falling asleep watching Sponge Bob (Sorry Federica…LOL!) counting down the hours of when you turn 8 EXACTLY which makes me smile! This last year has been a true challenge but you rose to the occasion and kept pushing. I have great faith in you Eli that in the next year we will learn how to ride that bike that you have always wanted to ride and swim in the deep end all by yourself but most importantly we will LIVE and live life to the fullest because that is what you taught me!

This is my promise to you Eli… I promise to NEVER forget your struggles, I promise I will try to let the past and what you have been through help shape who I am today but not define what I am about. I promise to strive to not live an angry life or to be envious of others. You have taught me to be true to myself and I promise that I will ALWAYS help you remember to be true to who you are because this is so important. I will smile, laugh, have fun, and enjoy life…not taking many things for granted like I once did. I will pay it forward Eli as much as I can in honor of you and what you have taught me.

These are my promises to you Eli and I hope and pray that one day you will be able to watch me see all these promises through… to remind me of these words that I wrote to you so long ago. So don’t look back Eli…only to see how far you have come…look forward to the future and all you can do with your new life!

Happy Birthday Eli

Posted in Diagnosed