Good Morning Fellow CVI Families and the TVI who love us (okay – put up with us),
This week’s Mom on Monday is Lauren, mother to 20-month-old Emma.
Lauren started a blog about her experience at Emma’s mother, Emma Bear’s Journey. Their unfolding story can be found at https://emmabear.org.
From the blog:
About me and Emma
I am a full time stay at home mom of an absolutely beautiful and amazing 13 month old girl named Emma. She was born with hydrocephalus and later developed craniosynostosis during her first few months of life. She’s been through more in her brief time here than most people will experience in a lifetime. I admire her strength, resilience and fighting spirit. This is her journey as well as mine.
Like a lot of children with CVI, Emma faces significant medical issues. Their successes and challenges are very familiar to my experience as E’s mom. She openly discusses many of the issues mothers of children with complicated medical diagnoses face – seizures, medical procedures, sleep deprivation, and the roller coaster of emotions that go along with all of this.
She has posted about a lot of CVI DIY projects that have helped Emma begin to use her vision. The lighted tray and her method of simplifying board books are a couple of helpful strategies.
Lauren also moderates the closed Facebook group, Parents of Kids with Developmental Delays. It is a great resource for parents to share and to ask questions.
Thank you Lauren and Emma!