There is a song called, “My Silver Lining” by First Aid Kit that my husband introduced to me weeks after Gabriella was born and it sums up her journey.
“I don’t want to wait anymore I’m tired of looking for answers…I won’t take the easy road. There’s hope, there’s a silver lining. Show me my silver lining, I try to keep on keeping on.” This song is about how life doesn’t always pan out as we expect but there is always a positive in a bad situation. Always. There is a reason it’s always sunny above the clouds. It’s about having resilience despite life’s challenges.
So, that easy road…nope, not this girl. After a very long pregnancy, it was time to be induced and when she finally decided to grace us with her presence, that too wasn’t simple. She swallowed meconium and I got to hold her for about 30 seconds. It was the most precious and beautiful 30 seconds. Then she immediately had to go to the NICU where they gave her oxygen and she slept peacefully like a little astronaut. I loved her to the moon and back. In the days to follow, they noticed a few “markers” in which suggested that she may need genetic testing. Small head, low-set ears and a few other concerns.
Nothing was simple. Which got me thinking…to have a baby that is “normal” (side-note, I hate that word almost as much as I hate mayo) or ‘without complications’, is actually a MIRACLE when you think about it. Do you know HOW many things have to align up perfectly? Thousands, no millions of things have to come together in perfect alignment. We don’t think about these things…until we have too.
Most people take this for granted. Now that we have been to Genetics at Boston Children’s for several tests, we learn more and more about how truly complicated genes can be and if even 1 little strand is off, twisted, missing or doubled, it can cause complications. Major ones.
So much of Gabriella’s journey has been unknown- several tests have come back negative, which is a god thing- I meant to just type good right there, but god came up instead, so I’m going to keep that. Who doesn’t love a God wink every now and then?
It wasn’t until her 2 year appointment when we went in and the bump on her head (that we always felt, but never was worrisome) was larger. Our doctor sent us to see the chief of plastic surgery at Children’s and that was a hard appointment.
It looks like she has “Craniosynostosis”
I’m sorry, cranio what??
The doctor must have said the word 7 times and I felt more and more confused each time.
I looked at the doctor with a calm, understanding face, but I was anything but calm inside and had no clue what he was saying. I was still trying to remember the long, hard cranio word he kept saying so I could immediately do what I wasn’t supposed to…google. it. The inside of my stomach was in knots and I started to lose my breath. On the outside, they must have thought I was handling this so well, but on the inside, a wildfire was spreading uncontrollably…and rapidly.
In the days and weeks to follow, I was a Hot Mess. Capital H, Capital M. And I still continue to be at times. Some days, I feel confident that I can handle this and other days, I feel full of fear, thinking about an unknown future with lots of salty tears and mixed emotions. Many tears of fear. The connection I have with this baby girl is indescribable. Love at its purest form. We all feel that. Her sisters, my husband, her cousins, her Aunts and Uncles, her Nonna, Pop Pop, her Meme and Grumpy, friends, neighbors- we all feel this deep, contagious love that she dishes out.
The hardest part I deal with is that I don’t want her to suffer…in any way. My heart breaks when she gets a splinter, forget a 5 hour surgery that includes blood transfusions and a surgeon who will break her skull.
But I also want her to get this surgery because the consequences of not getting it are much worse. I feel so blessed there are people out there that can even do such a complicated surgery- it’s amazing actually and I will forever be grateful for Dr. Proctor and Dr. Meara who will have my baby in their hands.
I know that everything will be OK. It’s a knowing, deep down. It’s a feeling I get when I spend my early mornings alone at the kitchen table reading the bible by the fire and feel Gods presence. Everything will be OK. It’s the dirt roads, the ones less traveled, the ones with pot holes that lead to the most beautiful destinations. This is our road.
There’s hope. There’s a silver lining. She won’t take the easy road, and neither will we.