No one ever expects to have or plans for a sick baby. As a soon-to-be-mom I spent months buying a collection of books, daydreaming about teaching Daisy how to read. I just knew she would devour stories and language like I did as a child. She will be an extraordinary writer and avid reader, for sure. Nick and I took a sign language class over the course of 7 weeks in the hope that we would be able to teach Daisy how to communicate with us before she could even talk. She would, of course, immediately take to sign language and be able to converse with us by three months because she is brilliant. I signed up for a breastfeeding class with Philadelphia's best lactation consultant with the expectation that we would nurse for at least a year - after all, they say children who have been breastfed feel closer to their mothers and possess higher IQ than formula-fed children. Naturally we would breastfeed! I daydreamed about teaching her to swim, to ride a bike, to build a snowman, to climb trees... Because I assumed our baby would be the picture of health. A "normal" kid.
Nothing prepares you for the sudden discovery that your child may never be a "normal" kid. Over the last few months, Nick and I have had many grim conversations with physicians who want to gently prepare us for the worst outcomes for Daisy. Each doctor has been sensitive, compassionate but above all transparent. They want to make sure we understand the possible outcomes that lay ahead.
"There is a chance Daisy may not survive delivery in her current state"
"Daisy may never be able to feed normally. We may eventually have to put in a more permanent feeding solution like a G tube. We can discuss that in a few weeks"
"We are not seeing the brain activity we would like to see"
"Daisy will likely have lifelong challenges"
"Daisy is a puzzle - in all my years of practicing medicine I've never seen
this combination of symptoms"
"We are so sorry we don't have more answers.
We are trying our best but Daisy is a very unique case"
"We don't see reason to be optimistic about Daisy"
In a "doctor/family" meeting last week, the attending physician asked how we are staying so positive - she looked puzzled by our upbeat attitudes and concerned that perhaps we didn't fully understand the magnitude of Daisy's issues. I explained that while we have absorbed all the clinical information being reported to us, we are clinging to hope and taking Daisy's lead. She may appear to have low muscle tone to the doctors but we see her stretch and fight to pick her head up to see our faces when we hold her. She may have periods of "quiet" in her brain activity but when we are with her she is alert and engaged in the world around her - wide eyed at the sound of music or a new voice, reaching to touch things like mom's hair. Daisy is telling us that she is excited to be here and that she isn't going anywhere - so we are following her lead.
As her parents and biggest advocates, the best thing we can do for Daisy is hold onto hope and focus on the positive. We celebrate every seemingly miniscule milestone like rolling over or having a good bath. We pray every night as a family and ask God to protect our Daisy and help her to grow into health and strength. We thank all of the medical staff who have supported us through this journey and all of the family and friends whose prayers we believe helped bring Daisy into the world despite the odds.
We believe Daisy is a fighter and that she is full of hope. So we are too.