We kept Liviana's decline, and our realization of what was happening somewhat to ourselves. I think the announcement on that September morning caught many by surprise. I felt myself close down (more than usual) on our family unit during her last week...wanting to soak up every minute without worry of updating on what was going on with her condition.
It was the beginning of September when the fears I had since diagnosis seemed to be becoming a reality. Liviana, who always had a bright smile, was smiling less. The last real smile I got from her was at the end of August when I returned after a quick weekend down to Arkansas to see my brother, sister-in-law and niece off to their new life in Brazil. I walked over to her bed, bent down and she gave me the brightest, biggest smile. I still see it in my mind...I cling to it. At the time I didn't know it would mean so much...it would be the last. That's why I hang on the little things each day with my kids. Brad, G and Miles went to Italy for G's follow up trip at the beginning of September. Evenings has gotten progressively worse for Liviana. We usually had a great routine and she dozed off peacefully while holding mine or daddy's hand. The evenings instead involved extra doses of medicine to calm her tight limbs and cries. It ripped my heart out each night. It was worse on any day she was moved too much. I had to start getting her up less to change her bed out. The times I did often required me to leave the room afterwards and cry. She had gotten so fragile, she was uncomfortable having her clothes taken on and off. We were now cutting her dresses so we could put them on her. She loved her pretty dresses, as I have mentioned before, so I just rotated three dresses so I didn't have to cut them all...that would make her sad. I gently rubbed lotion on her and dabbed lavender oil on her boney hips where she was susceptible to sores. The smell of lavender oil reminds me of Liviana. I could always tell she loved when she had her little "spa treatments" as I called them, even if she couldn't tell me so. She looked at me less and I had begun to suspect she was rapidly losing her sight. It seemed that she startled easily when I would reach out and touch her and sometimes it made her cry...this made me believe her hearing was weakening too. The last week of her life she started having random periods of apnea. I had to step away from the constant monitoring of her on the oximeter. Her doctor came to see her the Sunday before we lost her. She confirmed what we thought...that we were getting closer to that time. I kept feeling like there was something I could be doing differently, that I could save her somehow. That moment, when as a parent you realize you can do nothing but hold and love, is difficult...it is helpless and it hurts. That week felt strange. Brad had taken off work, we had a different routine and different mood in the house. Things seemed quieter and calmer. I look back at this as a blessing. Livi was so peaceful. She never seemed in pain. I think I was somewhat in denial because she was so peaceful..still thinking there was something, anything I could do. I was up with her in her bed until 3:30am that morning. She had a perfect heart rate, calm breathing and I went up to bed because Adelina was having blood sugar checks and was restless. Brad stayed downstairs with Livi in what had become the place he slept the past year and a half. I remember laying in bed wide awake, occasionally patting Adelina back to sleep. It was windy and I had the window at the foot of the bed open. I remember the curtains blowing straight up for what seemed like an hour or so. I was checking Adelina's blood sugar and getting ready to get up at 6:30. Miles came upstairs and told me that Brad needed me downstairs. As I walked down he called my name from the porch and I went out. He took me by the hand, I saw tears in his eyes and he said, "I don't think you are ready for this". I turned quickly and ran to Livi's bed. I put my arms around her and he came up behind me...."She's gone?" He squeezed my shoulders and cried, I cried. I wasn't with her. I wasn't with her. I wasn't with her. I am sobbing typing this. How could I not have been with my baby on her last breath? How? I was with her every single day of her life except when I was with her G for his treatment and check ups. I cared for her, I sang the ABC's with her, let her play with my hair, laughed at her humor, lingered over the perfection of her face, held her in my arms for hours while she struggled to settle her disease ravaged body. She had my heart, she was my life every.single.day.
My Liviana is gone. My life, my breath, my mind are never the same. Forever changed, forever sad, forever hiding tears that most won't see. Why was this angel given to us to lose? Why...I will never understand.
This is Liviana. Please, please...don't ever forget her!
Liviana knew what our lives had ahead of us as she prepared for her final days. I believe in my heart, she knew before we even found out. On August 13th we went to a doctor's appointment for what was our very unplanned 6th pregnancy. We left that appointment in a bit of a daze (the daze may still be present) with the knowledge that I was carrying 3 babies....a 1 in 8,100 chance of spontaneous fraternal triplets. We welcomed them into this world, at 38 weeks gestation on February 13, 2014. Roman, Cecilia and Cristiano.
I can't even describe the emotions of losing Liviana when I was 18 weeks pregnant with her 3 siblings...followed by the emotions of looking into their eyes knowing they will never be able to look into hers. They have given us all a gift. I still look at them, at nearly 5 months old, in awe that they are in our lives. They are miracles to me. Sadly, we learned around 2 months old, that Cecilia has MLD, just as Liviana and Giovanni. Our world seemed to crash again . We desperately wanted to have some normalcy...although things will never be normal. We will fight, as we have for Liviana and G. We will be going to Italy with Cecilia to go through the same gene therapy treatment her big brother had. Our plan is to leave at the end of August and remain for 4-6 months. The thought of this makes me sick to my stomach. It is going to separate our family, strain our family and put my sweet baby girl through pain that she can't understand. Please pray for Cecilia and all of my kids as we embark on this next journey that I would give anything to not have them endure.
Hug Your Babies!
Hug Your Babies!
Amy
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