Happy Birthday Ella!!!!
Jeremiah 1:5 – Before I formed you in the womb I knew you
On the Eve of Ella’s 5th Birthday I think of these words and I ponder on that notion that God knew exactly what her life would be like and the struggles she would go through at such a young age. I can’t help but feeling a bit sad at the idea that this time last year I was so excited that my baby girl was turning four years old…excited that as she becomes another year older it means we get closer to the place where we can enjoy doing more and more things together. I would have never imagined that a few short months after turning four I would get the worst phone call of my life confirming that Ella too had MLD.
My relationship with Ella seemed to start even before she was born and there was no doubt in my mind that she was truly a gift I would treasure. At five weeks pregnant I had an ultrasound and was told that I should go home and put my feet up because I was going to lose the baby. I had a sub chorionic bleed all around my uterus and there was nothing they could do. I went home and cried at the thought of having another miscarriage. I went back to the doctor three days later and the baby was still there and the bleed was smaller:) After another few days things looked a bit better but they could not say if I was out of the woods yet. Christmas was coming and I wanted to tell the boys if we were having another baby but not if I was going to lose the baby so I prayed a simple prayer. Please God I said…just let me know if I can tell the boys. That’s it…simple as can be. As I fell asleep I had a dream in which my father in law came to me (he had been dead for 7 years) and told me that the baby would be fine and that I was having a girl. He then turned around and left. I knew then that everything would be ok. As my pregnancy progressed and it was confirmed through ultrasound that I was indeed having a girl I had another dream. My daughter came to me and she was about 20-30 years old. I remember it like it was yesterday and she was so excited to see me. She hugged me and said she was so excited to be with me again. We hugged and I tried to get a good look at her. She was a bit shorter than me with golden hair and it was curly like mine. When she was born she looked nothing like my dream but now she has the beautiful golden hair and I wonder now if her hair will get curly after chemotherapy. I felt like I had a bond with Ella long before she joined this world.
When we were at CHOP getting the kids tested for MLD I remember how horrible Ella was about getting her blood drawn and going potty in a cup. I remember sweating as she was getting the blood drawn while she was screaming so bad thinking there was no way she will have this. God only gives you what you can handle and there is no way Ella could handle this. That day was Friday and the doctor at CHOP said they would have the results in a week. On Wed October 10th I came home from the store and everyone was home in the dining room for some reason. The phone rang and when Eric handed the phone to me and said it’s CHOP I knew it was bad. I heard that I was on speaker phone and my heart sank. There must have been more than one doctor in the room. She started with the boys…Eric and Evan are healthy but they are carriers….OK, I said as my heart started to beat faster…I am so sorry Mrs. Vivian but Ella also has MLD. I remember she wanted to talk and I just kept saying ok, ok, ok I have to go and I just dropped the phone and fell to the floor. I remember running out front screaming and crying… I could not believe it. My poor friend Kelli just happened to stop to bring me wine and I am sure regretted that stop! WOW!! What bad luck for her… I was a wreck. I remember calling my cousin Jennifer and all I could say was ELLA!!!!!!!!!!!! Boy, I have not thought about that day in a while (thank goodness because I feel like I need a glass of wine just re-living it:) I remember giving myself time to be sad, angry and frustrated but then I knew we had to get a plan in action for both kids.
Today I am feeling grateful for how far we have come in the last almost ten months although there are days like today, knowing Ella will be five tomorrow that I question life and why things happen. I am so sad that my precious baby girl has this disease BUT and it is a big one….She hopefully saved her big brothers life! WOW!!!! That gives me the chills. Eli was turned down immediately when we contacted Dr. Biffi and her staff in Milan. We were told he was too old and his MRI looked too bad. Along comes Ella…SO many emotions but to remain positive, she will be our little miracle by having this disease…PERIOD!!!!!
All my children are my heroes for different reasons but today it is Ella that I want to acknowledge and thank for being my hero. She has rolled with all the punches that have been thrown at her and she keeps smiling through it all. Times like these I wonder what God is thinking as he looks down on her and this situation. I believe that he is thinking that this is unfolding just as it was planned before I even knew her. I believe she was born for great things and this is just the beginning.