Fear Not

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

~ by Rebecca on September 3, 2013.

Posted in Diagnosed