Most of my life I have believed myself to be a pretty strong person…maybe not as strong as some think yet strong enough. I never realized what the word strong meant until these last 3 and a half weeks of my life.

How many of us have thought in our own delusional mind every time our child got a headache that there was a possibility he/she had a brain tumor? Go ahead raise your hand… I know I have over reacted on more than one occasion when it comes to the health of my kids, yet somewhere in me I always felt they would be o.k.

Thursday Sept 27th, 2012 that all changed. I remember when I woke up that day I was so nervous…not so much about what the results of the MRI would be but how Eli would do with sedation. That was my big worry…I wonder if I will ever have such a small worry again. We got to Dupont early and checked in. Hut was with me along with Ella as I did not think we would be there all too long. As the kids colored and waited to go back into the exam room I had no real feelings about the day but I remember texting some family members asking them to say a prayer that the MRI would go o.k., that sedation would be fine and he would tolerate anesthesia well. We were called back and from this moment on I feel like I can remember everything in the last few weeks like it was hyper-reality. Now I will break off here and say this is SO NOT NORMAL for me to remember things so well. You see, for someone who has suffered from anxiety for the last 16 years off and on, living in the present moment was not one thing I was good at. Soooo back to the moment of that day…As we got into the exam room I had the nicest Nurse and the best Nurse Practitioner which eased my mind a bit. As the nurse was examining Eli I spoke to the NP and as she asked me many questions about Eli. I could tell she was truly interested and was listening to everything I had to say. After I explained all the reasons I felt something was “wrong” with Eli, even if just a vague feeling she said “all doctors need to trust a Mothers/parents intuition more.” As Eli was given his “goofy” juice to calm him down for the sedation we sat and talked and played video games on the hospitals new gaming systems that hung over the beds. About an hour passed and they came back in to say they were sorry for the delay but another child needed to get contrast so it would be a bit longer…they said “you would want the same thing done for Eli” I agreed!! The time went pretty quick because he was happy and we just played. They came in to put him to sleep and that was tough because it hurt him as the meds were going in and I don’t like to remember the tears from that moment. I went to meet Hut & Ella for a snack and before we knew it the hour was up. We went back up and after another 30 minutes of them not coming out I got nervous. I started pacing until the nurse came out. I can tell you she did not look happy and neither did everyone else who suddenly would not look at us as they walked by. She informed us that they needed to keep him under another hour to do contrast. I have to admit I lost it… I took Ella out to the playground, paced and called a few people. “what could be wrong” I think I said it 100 times over. “a brain tumor? A lesion? ” I could have never imagined in my wildest dreams what would lay before us. All I wanted to do was see Eli.  I found myself yelling at Ella to hurry off the playground because I wanted to get back in case they were done. As I walked back into the hospital time seemed to slow down and almost stop. It was then that  I realized my life was about to change, I just did not know how much. It was not long after we got back to the waiting room that I thought I should call the neurologist who ordered the MRI to say I would like the results before the weekend…and when she answered the phone before I could get anything out she said “Is this Mrs. Vivian” I thought I was going to die…How did she know it was me? Why was she waiting for me to call? She said” The doctor needs to see you before you leave” Even typing these words takes me back to that dreadful moment. I knew it was BAD! The nurse came back to get us…Eli was out and waiting to wake up. We went and sat by his bed until Dr. Hopkins came walking in to us with a face I will never forget. A face of a semi new neurologist who is getting ready to deliver some pretty bad news to some unexpecting parents. She took us to the “consult” room or as I see it “the bad news room” and before she could speak I said to her “just spit it out, is it a tumor?” She could not speak. I get it…how do you tell someone their child who no one really thought needed an MRI now has a fatal lysosomal storage disorder. So, I forced her to spit it out much quicker than she was ready to but she did. I never cried, I just listened to her tell us that our Son might have a year to live maybe more…no one could know. I walked out and went back to Eli’s bed. I could not get him out of there quick enough. The ride home we were numb…I did not know if Hut was going to have a heart attack right then on the way home but I thought he might. Somehow we made it home. By now most of my friends and family knew,  thanks to modern technology and my journey of research began immediately. Thank goodness for good friends because Eli’s buddy Ethan was there not too long after we got home and for a split second things seemed normal. Question is “Will anything ever be normal again?”


~ by Rebecca on October 16, 2012.

8 Responses to “Uncertainty”

  1. This brought back so many memories of the day we learned that Liviana had this horrible disease. Then when we found out Giovanni as well had it our world changed. I ask Amy everyday for updates with your children and I pray that Dr.Biffi takes them both. Amy and i know what you and your husband are going through and asking yourself if flying halfway around the world will save your babies. As a father it was an easy decision. Drop everything and go. Figure everything else out later. The best decision we could have made. Giovanni is doing wonderful and is a normal little sweet boy thanks to everyone there in Milan. It brings joy to our hearts to know that Giovanni is the reason why we can tell parents that there is hope when they were told there was nothing anyone could do. I told sweet Livy about your family and that you were going to Italy to get better like G and she got the biggest smile on her face. I love telling her that she saved her little brother and possible more children. We pray for you daily and want you to know that when you and Amy do talk about the treatment to let your husband know that he can call me as well as I would love to talk to him. Sorry for the long post I just feel a connection with your family and want you all to know we are here for you to call with any questions.

    • Brad, I thank you so much for reaching out! I thank Livy for being the one to pave the way by saving G’s life and maybe the life of my babies. She is a special little angel that is for sure! I know it would be a great idea for my husband to talk to you as I feel like I have support through my writing & sharing of their story. He I know would appreciate that! I, like you am ready to drop everything to go to Milan and I don’t care what the cost. I feel so blessed that I met Amy & now you on Facebook & I really look forward to talking soon! I would love to hear G’s story and how you all survived. Thank you again & I can’t wait to chat! God Bless you all. Xoxo

  2. As I sit here sobbing for you, I just want to reach out and hug you!! I’m praying so hard for both of your babies and your whole family!! If you need anything sweetie I’m here!! I still can’t believe you are going through this!! But I do BELIEVE you will get your miracle!!! Hugs and love!!!

    • Jenn, Thank you so much for caring for me & my babies! I know you are praying and that means so so much to me. Funny, I still can’t believe it either… I still feel I will wake up and this will all have been a nightmare. Thanks again Jenn & BELIEVE!! Xoxo

  3. I so agree with trusting our instincts as parents. I am so glad that you have a large support system. Let us know if there is anything we can do. Until then, we will pray.

  4. My beautiful Rebecca,
    God has been preparing you for this very moment since you were a 3 year old little girl afraid of a big storm. His words are the same. “Don’t be afraid”. While this present storm threatens and pounds with its ferocity and is frightening to your core….He is right there.
    God is doing a mighty work through your hands and words and heart, Beck. Keep fighting…….because you are the greatest warrior in this battle….and you are not fighting alone.
    I love you and I am right behind you, my sweet cousin.

  5. Your strength is amazing… As much as we can all ‘watch’ and.read about your journey from the outside, I hope you continue to find even more strength from your team of ‘warriors’ ….love you for sharing your thoughts…

  6. Tons of prayers for you and your family…..always trust your instincts and remember…. miracles do happen!

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