I’d like to start this out the same way I’d like to end this: There is so much power in something as simple as a smile. It shuts out the fear, uplifts spirits, erases the pain and emits so much love and pure happiness. Let your smile change the world.
When we first found out that we were going to have a baby, all I could see were visions of this perfect little being looking like a combination of my husband, Charles and myself. A beautiful baby girl sleeping in my arms, crawling around our home and running around in our backyard. And when she did arrive, sweet Olivia was perfect in every way. A tiny little smirk and her daddy’s feet.
Except for what the doctors told us. Your baby is jaundice.
Hmm…ok. Isn’t every baby a bit jaundiced?
Yes, but your baby is very jaundiced.
So under the lights she went, looking quite ridiculous in a blue blanket with her tummy exposed and black eye covers. Not the peaceful atmosphere you picture when your baby is 20 hours old. But that’ll cure it, right? Nope. The visions and plans that I had built in my head suddenly halted and were replaced with so much confusion. It never crossed my mind in the dreams of starting our little family that after 24 hours after taking her home from the hospital, would we have to pack our bags and spend five days at Children’s Hospital.
Charles and I were terrified. So many X-rays, ultrasounds, needles, an EKG, a horribly awful eye exam, all this pricking and prodding at our four day old girl and so many tears from little O and us. I felt so helpless – wishing so badly that I could bring her the comfort and solitude that she had in my belly and in our arms for those first few days. But this girl was already so resilient. I swear that after each of the tests had finished and the tears dried up and the calm set in, O would peacefully sleep – from exhaustion I’m sure – with a little smile on her face.
Sitting here now, writing this with my 6 month old daughter next to me, I feel my chest tighten thinking back on the time where there were so many unknowns. After too many trips to Children’s for blood work, a liver biopsy, and an attempted Kasai surgery, we found out that Olivia has a rare form of Biliary Atresia. Biliary Atresia affects 1 in 12,000 babies. The form she has is Biliary Agenesis – affecting roughly 1 in 12 million. We’ve tried Googling her specific condition but there isn’t enough research out there. Maybe 5 other cases in the US? She has no gallbladder and no bile ducts in her liver so there is no way to filter out the bile and other toxins out of her body. She’s slowly getting sicker and sicker. The only ‘cure’ is a liver transplant.
A liver transplant. And although the transplant will cure her of Biliary Agenesis, it will then be replaced with another disease that she’ll have for the rest of her life – lifelong medication for immunosuppression and followup.
Terrified doesn’t begin to explain the fear I have, knowing what pain she will have to go through.
But what I do know more than anything is how grateful I am. How thankful and blessed I am to know that Charles and I were chosen to be the parents of O, to help her stay strong. To give her courage. To hold her close, so tight, and be strong for her when she is so confused from the pain in her tummy. I’m so thankful for the doctors and staff at Children’s Hospital for their care and knowledge and educating us. I feel endless amounts of gratitude and love for our support system. Our family and friends for their constant love and positivity. People we haven’t talked to in years, people we haven’t met at all and churches literally around the world are sending prayers for Olivia. Thousands of people are praying for her health, healing and happiness.
It’s easy to be angry. And I could go on and on about the struggles we’ve had these past couple months. About how many days when I’ve cried just as much as her, if not more. About how many medications and vitamins she’s on. My vision of only breastfeeding my daughter to now having a strict diet through bottles, her feeding tube and a syringe. I sometimes ask why this happened to Olivia, but never once have I asked ‘why me’. Charles and I were given O for a reason. To be strong with her and be beside her on this journey. Each and every single one of us were brought on this earth for a reason. Our reason is to be her momma and daddy, and her our baby.
Olivia was given her beautifully bright smile for a reason and Lord knows she uses it. Her smile brings me back to reality, a good reality. She reminds me to live for today and enjoy every moment. That with every bad thing that we go through, it fades away and helps to appreciate all the beautiful moments. Her smile reminds me that we are all here for each other. Through all the pain she has endured and what she will go through, this girl is still able to smile and laugh and look at Charles and I with such LOVE!
On May 11th she will officially be listed on the transplant list for a new liver. Waiting will be hard. It’s such a surreal feeling to know that through someone else’s death, Olivia will be given a future. A long breathe of relief for science and technology which is still fairly recent – the first liver transplant was in 1963 – otherwise little O would have maybe one more year with us on this earth. The last 6 months have been quite the whirlwind but we are so ready for the adventure ahead.
Thank you for reading Olivia’s story. I hope her journey so far is an inspiration and reminds people that no matter the circumstance, keep your head up and keep smiling. Smile through the hurt and the tears because someday when you’re smiling out of just pure happiness, somebody will notice that out of a room full of somber faces and turn their day around. If anything, be there for somebody in any way possible.
I pray that you will forever know how strong and brave you are. The scar on your tummy is something to be proud of. You have a story of courage and winning over something that tried to hurt you. Your bright smile stops my heart and captures my whole being. When your daddy and I were fearful and stressed about your condition and what lies ahead – what you don’t realize is that even with everything that you are going through, you’re the one giving us strength. Every time you bless us with your smile you help us forget that fear. You’re the one reminding us that everything will be alright.
I love you with a love I never imagined possible. The adventures that we will have together makes me so excited. I can’t wait to continue to grow with you and discover who you will become. I hope you will forever enter a room and any situation with your head up, bright eyes and of course – that smile. You can and you will do wonders in this life. Let your smile change the world.
“Show me the path where I should walk, O Lord; point out the right road for me to follow. Lead me by your truth and teach me, for You are the God who saves me. All day long I put my hope in You” Psalm 25: 4-5