The fluid in Meara's head has gotten bigger and therefore tighter. Megan took Meara down to Childrens this afternoon for a fast MRI and consult with neurosurgery. The surgeon decided she needs a shunt due to the fluid building back up and the fact that it still hasn't dissipated since her November surgery. Meara will be admitted to the hospital on Friday at 10:00am and the surgery will be at 1:00pm. The surgery will last two hours and she'll be in the hospital for twenty-four hours so she can receive her four doses of required IV antibiotics. She will have the shunt for the rest of her life. The valve is installed between her scalp and the bone flap. The catheter will be inserted through the bone flap and dropped down through Meara's brain, down (inside) the neck and end at her peritoneal cavity. The catheter will extend as Meara grows, meaning there is enough catheter rolled up to adapt to her changing body.
Meara is full of beauty. She sits with a heart full of imagination and innocence. When she curls up to you and you feel the wonder…the curiosity and light that she brings. It is as if we inherit something unique and special by enveloping her soul. It provides shelter…and warmth.
It also ironically hurts. Thinking about what she has been through. Thinking about the challenges she has had to face. Thinking of the brain surgeries and the times we've had to leave her in the operating room on the surgical bed kissing her right after she's been put to sleep. Knowing that as we sit in the waiting room that we've just made such a insanely difficult decision to put her there…
And there it is…the incredible forest that is expected to be navigated. Because we have to find our way out. She still has her entire life ahead of her She's so beautiful. And so far, her life has been filled with so much vulnerability and depth…such complexity.
At some point I bet I should actually talk with someone who can help me sort all of these feelings and hopefully move a few steps forward. Time…where is the time.
Making these difficult decisions hasn't made us stronger. It's empty to think so and you cannot offer us evidence to convince me of it. It has made us more aware…perhaps more conscious and present. It has made us see the life that still awaits us moment to moment knee deep in…intense meaning. And it doesn't make us stronger…just more aware.
It's alright…but it also intensifies the love so much that it hurts. That when you hold your daughter's hand as she falls asleep you can't help but think of her journey through hope. It's so intense and it really just makes you want to embrace her and never let go. Ever.
All our love,
Aaron & Megan