Here we go again
After a few days on the rollercoaster I decided to step off and just focus. I refused to allow myself on that ride again! My focus had to become so centered and so present. PRESENT… I never believed I could live there yet the last almost four weeks I have been no place but the present. Actually I lie…fast forward to this week… I was at the bank and I saw a precious little girl with deep brown eyes like Ella, she was probably around seven years old and as she looked at me with those eyes I felt like I was looking at Ella. Will she ever be that age? Will I ever see her grow up? Will she go to the prom? Will she ever have a first kiss? The questions kept going until the tears started and I had to force myself to just STOP!!! No one is guaranteed tomorrow. Not even very healthy people…anything can happen. My grandparents who were two of the most important people of my life would always use the phrase “God willing” I would say “Nana, can you come over next week?” She would say “God willing” AMEN!! NO ONE IS GUARANTEED ANYTHING and we have to remember that. Yes it is more prevalent to someone like me with a “sick child” but we should all remember that.
Rewind to a week and a half ago…The dreaded day was here… I had to get my other kids tested for MLD. I had wrestled with this decision for at least a week and just decided there is some kind of comfort in knowing; whether good or bad at least there was an answer. The kids took the day off from school and we all went to CHOP. We should have been there maybe an hour but it turned into a four-hour trip. Needless to say it was not my day! After we finally saw the doctor and got all the blood work and urine done on the rest of the kids we were finally on our way home. (oh, almost forgot, they took even more blood work on Eli to test to see if any one of his siblings would be a good match for bone marrow) Driving home I got a phone call about Eli’s urine (the true diagnostic test in determining if your child has MLD) They test the urine for sulfatides and if there is sulfatides then it is a pretty open and shut diagnosis of MLD. YES Eli’s urine had sulfatides…Wow! ,That’s it…the last hope I had, was now washed away. Part of me would have sworn that there was no way he had MLD. Not because I am like “this could not happen to me” because that is not me, I just did not think he matched the disease. I was numb yet again… I could not take much more.
God bless friends because I went straight to a friends and downed a glass or two of wine before heading home to make sure Hut knew the reality of the situation.He was one who kept the hope until the very end…he refused to believe until every single test was back. I did txt him earlier but I assumed he did not read it as he seemed ok when I walked in the door. Well, I told him and he was shocked…mabe not shocked but any hope he had, was now gone with mine.
As we went about our weekend we thought it would be a week till the other results on the kids came back so we just tried to be “normal.: Baseball games, party at a friends, and more baseball. Life was good this weekend! Monday came and normalcy continued…it was nice to not have a doctor appt and to not answer the phone when Duke or Pitt called. I just needed a break!! That break ended quickly as I walked in the door Tuesday afternoon. The phone rang and Eric answered it. As he handed me the phone he told me it was CHOP. “No, the results can’t be back yet” “don’t give me the phone… I don’t want to know” As I got the phone everything slowed down once again. I could see Eric in the dining room, Evan doing homework at the table & Eli & Ella running around. I heard “Mrs. Vivian” I could tell immediately I was on speaker phone which I did not like. Like they needed others there to witness giving me the bad news…did others need to hear my reaction…did they want to hear the teats and the anguish in my voice? I will never understand that phone call. She said “we got the results back of your children and we wanted to let you know that your Eric & Evan are carriers of the disease” That’s all I needed to hear… I think I fell to the floor as I knew what was coming next. “I’m sorry Mrs. Vivian but Ella also has it” I just remember almost passing out, getting back up then falling back down. I could not imagine this would ever really happen. Not one but now two kids with this horrific disease. As I felt like I was hyperventilating I went outside into my garage and called my cousin. I could not speak… I just said “Jenn” and cried. Then I proceeded to kick everything in my garage and break a few things that I don’t even remember breaking. Not but a minute later my poor friend showed up. I can only imagine what she was thinking when she walked in on such a life changing moment. I actually felt bad for the people in my life who loved us so much…they were so sad for the kids/us and it broke my heart.
Fortunately or unfortunately I did not allow myself much time to feel sad as I needed to refocus and come up with a plan!!
Fear Not 
Sending you all the strength and prayers that I can…..:-)
Thank you so much! Xoxo
Becky, your writing is beautiful. So real and heart wrenching. You are doing something so amazing for your family, putting yourself out there, raising awareness…it’s incredible how many people know your story now. I hope it gives you some peace and hope. We all believe!!!
It does give me peace now. Every message gives me a bit of peace and/or comfort. Thank you for believing along with me! Xoxo
God Bless you and your family. You will remain in my daily thoughts and prayers….
Thank you Sue! We appreciate it! Xoxo
Becky your family is always on my thoughts and prayers. Your strength amazes me, this is what heros are made of…You have become one of mine!
How kind of you! Thank you for the thoughts and prayers. God is giving me my strength hour by hour …and all the emails, texts and posts have been a huge support, thanks! Xoxo
Becky I would hit the like button but it would just seem like the wrong thing to hit! How on earth could anyone “like” what you and Hut are going through!!! As the mother of a downs child (okay she’s 37…but she’ll always be my ”baby”) I can understand some of what you are going through. I almost lost her 7 years ago to Nocardia of the heart. She is fighting another infection and her memory is really starting to decline. It is heart breaking to look at our beautiful children, knowing there is something wrong and as hard as we try we can’t “fix” them. Your story is an inspiration to all of us that none of us are guaranteed health, not even those who think they are healthy. I pray for you and Hut to find strength in each other, your friends (yes even us on FaceBook) family and never forget the strength you will find in your faith in God. I hope you continue to write your story so we can all help you deal with the events that you are facing. God bless all of you.
Thank you Joan… God is definitely my biggest strength right now and I cannot imagine getting through this without him. I will NEVER stop with their story & hope it goes for a long long time!! Thanks again! Xoxo
from one UPLL family to another, your family is always in our thoughts and prayers
Thank you Lisa! Xoxo
I read your words, think about, and pray for you all daily. Even before this news I always thought of you as a one of a kind family. I hope you can continue to find the strength in others to help you along the way. You’re an awe inspiring mom.
Thank you so much Mrs. Carr! I really appreciate it! Hope those babies are doing well! Xoxo
Becky, you and your family are in our daily thoughts and prayers! Angelina came home from school yesterday and said “mom, I asked my teacher and class to pray for little Eli and Ella”. We are all pulling for the Vivian family!! Hugs to all of you!
Thank you so much Tricia!! We really appreciate it!! Xoxo
Praying for you and my church and bible study friends are praying as well.
Let me know if there is anything more we can do. Reading the Psalms is comforting to me as it reminds me of who God is. My favorite is Psalm 139 which talks about God’s presence with us always, and his complete knowledge of us and the days he has ordained for us from before we were even born.
Lauren Leisner
Hut and Becky – I got chills reading this….Eli and Ella will always remain in our prayers. My mom, Kay, added them to the prayers at church. The Vivian family is always in our prayers. Big hug around all of you! Love you all!
Becky, You are in my thoughts and prayers. God is with you and your family. Remember the footprints poem,God is carrying you through this difficult time in your life. I felt exactly like you when I found out kayle had a devastating heart defect. I continued to pray harder than I ever did and knew it was in Gods hands. God chose you and Steve to go through this because he knew you were believers and this happening has caused thousands to pray. I trust this will all be ok,I see it no other way. Your children will be cured! Have you ever heard of Padre Pio? He was a saint a healer in his time. I believe through padre Pio’s intercession Kayle was healed. If you would like to find out more,let me know and I will share my story about it. There is also a Padre pio center in Barto if your interested in going,I would love to take you. God Bless -Michele
Becky, reading this brought tears to my eyes. Your family is in our thoughts and prayers daily. You are an amazing and strong woman with a great family. We have never meet but my son Blake plays baseball with Eric. My son wears this Warriors jersey with such pride and support of your children. Not a day goes by that we do not say a prayer for Eli and Ella. We believe that miracles do and will happen for your family.- Mandy Strain
That was really tough to read. Thank you for sharing your story. My niece was diagnosed with MLD about two weeks before your son was. It’s the only thing that’s mattered in my life for the past month and a half. As much as relating to people is comforting, it is terrible to hear of any other child with the disease. I hope your kids get into Milan and somehow get free of this disease. I will read every update in your blog and think of your family often.