New parents are innately on high alert and worried by every change in appearance, behavior and routine. Constantly consulting doctor Google and parent boards making sure that the change is "normal" or if someone else's baby has experienced it too. The mommy blogs and parent groups on social media offer a wealth of individualized experiences to help put new parents minds at ease or at least give them a sense of security that they aren't alone. Babies cry, they have sleep regression, they make unusual noises, and sometimes refuse to nap but raising a baby with a "life long" disability changes everything.
The hardest part I've found when it comes to being a new mom of a baby with a diagnosis, with a disability, is always thinking of complications or symptoms of the disability first instead of just the typical needs of a new baby.
When you spend the beginning of your baby's life in the NICU, where they report on changes and symptoms every 3 hours...it becomes second nature to think symptom of complications first when changes or new things pop up.
Brynnleigh is what her surgeon considers a unicorn, she is a Myleo baby without a shunt. When we were in the NICU her head circumference was taken daily and her soft spot was checked every time a nurse came into the room. Naturally once we were home it became second nature to feel her head multiple times a day, and I have since stopped obsessing over it but in the back of my mind the worry of hydrocephalus is still there. With every fussy moment where it feels like she is inconsolable my first thought doesn't go to gas pains or her being tired it automatically goes to is she in pain from Spina bifida or is this an indication she is having a complication.
I guess what I am trying to convey In this post is when you have a kiddo with a NICU start and/or a diagnosis you lose sight of the typical baby ebbs and flows of development and think worst case scenario first. And relying on doctor Google and the typical mommy blogs typically amplifies the worry. That's why I do this, why I share the ins and outs of our journey because if I can help one new mom or dad feel seen, then I have been successful.
Being a new parent is hard, isolating, but oh so rewarding, adding in a unique diagnosis, simply makes each and every milestone met no matter how small that much remarkable. Being Brynnleigh's mom is the greatest accomplishment of my life.
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