I vividly remember many details of this week 8 years ago. I loved being pregnant. I felt good through the entire 9 months. I loved every pregnancy moment with both of my girls. I was on my feet a lot when I was pregnant with Liv. I was a surgical tech at the time. (Loved that job!) Ironically, I was at work getting ready to scrub into a case. I received a phone call from the main OR (that’s the ironic part). They called to tell me they had a time slot open on the 6th if I wanted to come in a day early for my c-section. I didn’t even think twice and said, YES, of course! I immediately called Jake and shared the good news with him. He shared in my excitement that we were going to meet our baby girl a day earlier than expected.
The beauty of working in the OR and needing a c-section is that I was able to hand pick my OR staff for Livia’s birthday. The surgeon, scrub-tech, CRNA, anesthesiologist, they were all my friends. People I worked with. People I trusted with my vulnerable body, and of course trusted to safely remove my first born. I remember just about every single day of being on the other side of the blue curtain. I of course, remember the nerves. However, the environment that was created that day was one of excitement and celebration. It was personal for everyone in that room, and they made me feel that way. They shared in my nerves, excitement, and anticipation for our girl. Of course, I remember Jake. When he was escorted into the OR, my friend Greg who was the CRNA, brought Jake to my
CRNA extraordinaire, Greg

head. He told Jake….”Just don’t touch anything blue.” I remember Jake’s eyes over his mask. He was wide eyed, and focused on me. His hand on my shoulder and he whispered in my ear “We get to meet our baby girl. I love you so much.” When the meds hit my system, I was overwhelmed with nausea. Greg, being the amazing guy he is, came in quickly to my rescue and simply put an alcohol wipe under my nose and told me to breath deep. I did, and it was instant relief. Greg, I still love you so much for that moment. I thought, how simple, how caring, and how out of the way he went to make me feel better. It wasn’t long at all. A few tugs, a few familiar smells, and sounds. I knew exactly what they were doing on the other side of the curtain. I was so ready. I wanted her here. Jake was told to stand up to see her coming out. Greg had to kindly remind him not to jump into the sterile field. He was ready to pull Liv out himself. I heard the suction, I heard the cry. I heard my friend Renee say “she had so much dark hair!” Then the curtain dropped. This next moment is one that I pray I remember until my last. The very first moment I laid my eyes on my girl. She was so perfect. Her hands and feet were curled so tightly into her body. As if she were holding herself. Her lips were so full and so dark pink. Her hair was dark. Everyone celebrated her arrival in tears and smiles. I had no idea how in that room that day, not only was my daughter being born, but my heart was being born. My heart wasn’t just being delivered, it was being transformed. Like a re birth of my heart through the birth of my daughter.

It’s no secret that Livia’s birthday has an undertone of sadness for me. How can it not? It’s a “mask” moment for me. I go on with planning a party, inviting, cooking, baking, present buying, all while wearing a mask. Her birthday is a reminder that she has a death sentence, and time is not on her side. I do all these typical birthday things while wearing my mask. Shielding the feelings of fear, anger, sadness, and all the emotions that should NEVER be tied to a birthday. It’s unfair, but I’ll be damned if I’m going to let it steal my joy. You see, Sanfilippo Syndrome and I have it out…..a lot. And I always win. I’m no rookie at this birthday thing, so I’ve had time to prepare this year. In years past, I’d be in a brawl with SS and my thoughts would be…she’s going to be 5, and then 6, and then 7. What’s going to happen then??? This year, I’m embracing that she’s 8 years old. She gets to be an 8 year old. I have an 8 year old!!!! And that’s it. I want to celebrate her life and that she’s here. I get to wake up to her tomorrow, hold her, sing happy birthday to her, and celebrate with those that love her the most in this life. She is more beautiful today than I could have ever hoped for. She is the most calm, laid back, pure little person that I’ve ever known. She has taught me more of how I should be as a human than any other person. How powerful is that, when she has no words to teach such things.
As far as my heart, I’ve learned that my heart is on loan to me. That’s one big fat pill to swallow, but because of the opportunity that Jake and I have been given since that blue curtain has dropped has been a true experience of re birth. What we have taken so far is that if we are able to nurture that heart, fill it with as much love as humanly possible, share that heart with others, it will truly be ours forever. 
Happy 8th Birthday, my beautiful and perfect Livia Grace. May this 8th year of your life be the best one yet. I’m so thankful for you, every single day. You’ve grown me into my best. xoxo