February 26, 2019.
I had no clue what was to come. Felicity was born fast and furious. She came out an odd shade of blue and was whisked away quickly. This was normal, all of my babies came out quiet. What wasn’t normal was the sounds I heard when I was finally able to hold her. Her breathing was so fast. Loud. This began our story and I didn’t even know it.
I kept asking the pediatrician, why does she sound like this. A cold. Fluid in her lungs from fast delivery. Reflux. The explanations made sense but the fix never worked.
I had no clue that one year ago today my life, my story, the story of my family and other children would change forever.
Issues piled on. Development never happened. She just wasn’t like my other babies. Small. Struggled with nursing. Never smiled. Never hit the expected milestones.
Here we are one year later. Her birthday. A day I wasn’t even sure would come. A birthday I’m not sure she’ll ever see again.
She weighs less than her sister did at birth. 9 pounds 4 ounces. What she lacks in size she makes up for in strength. Despite her severe limitations, she is the strongest person I know. The things she has endured would reduce a grown man to his knees. She fights, daily.
We still haven’t hit those milestones. She does smile. Her smile is everything to me. I came to a place where sitting didn’t matter, smiling did. It lights up the room. It brightens my day. It’s the sweetest smile I’ve ever seen.
Felicity still doesn’t have a firm diagnosis. I pray daily that she will soon. I fight for her. I need her to keep fighting until we can figure it out.
This year has taught me more than I ever knew possible. It taught me things I didn’t know I needed to learn. It has changed me. For the good, and the bad. I am fierce. I advocate daily. I say no. I disagree with the doctors who are trusted with her care. I fight for what I think she needs. I relentlessly seek out help, guidance, and resources.
I am also afraid. Afraid she won’t see 2. Afraid this birthday will be the only one we mark. Afraid that if she does make it, her life will be impossibly hard. Afraid of the unknown. Afraid of all of things we’ve been told. Afraid of making the wrong choice, fighting the wrong fight. Afraid that my beautiful family of 6 will become a family of 5. I can’t imagine life without her.
You see, as hard as this year as been o wouldn’t trade her for any other version of her. I believe the spirit she possesses is because of her challenges. I believe her spark and charm is a result of her lack of physical strength. I believe she was sent to me, to the world, to teach us lessons we need to learn. I can say, with confidence, that no matter what happens Felicity has taught everyone who’s life she’s touched some lesson. Some truth about life that they needed to see.
Life isn’t about the length of time we have. No one really knows how long that will be. Life is about the way you live. And this child has lived. She has gone places, met people, seen things, been loved every second of her life. She has been held by her loving family through every test, every procedure, every ounce of pain. She has never been alone. Countless nights spent up because the hospital won’t let you sleep with your baby. So I stay awake, so she can sleep. Never alone.
She is so very loved.
So while Felicity may not be hitting milestones. Her medical problems may be mounting. Her physical strength may be absent. Her life has meaning. It has weight. It has purpose.
This has been the hardest year of my life. But it’s been a year to celebrate. The victory. The pain. The smiles. The joy. The tears. It’s all lead us to this place.
Happy Birthday Felicity Christina. You are so loved. So treasured. So wanted. You will change the world. Your one year of life has had a bigger impact than some 50 years of life. You are to be celebrated.
Here’s hoping, praying, wishing, and fighting to make it to 2, 3, and beyond.