The unknown is a scary thing.

Blogging for a group like 5MFSN is scary. Putting my words, my thoughts, my child’s story out there for others to read is scary. But I do it because others have done it and their thoughts and their stories have comforted me. I also know that this will challenge me and become the outlet I need right now.

This time last year my head was swirling with the unknown. The little we knew about our daughter’s diagnosis was from an ultrasound on her head that revealed white matter damage in the brain. We’d have to wait until after the holidays to have an MRI and consult with a neurologist.

I spent those few weeks of the scary unknown reading and researching. I took the details I knew about my child and searched every single one on the web. The brain damage, her  hand always held in a fist, her stiff legs, inability to sit, obsession with lights, and the list went on. I had a list of possibilities that I carried around for those long couple of weeks.

Finally, I stopped going through all the medical information and turned to real moms and their stories. What a blessing to read that you aren’t alone and that others have come out the other side to find happiness and joy amongst and despite doctors, therapies, and missed milestones.

When my husband and I finally sat down with the neurologist and he explained spastic diplegic cerebral palsy caused by periventricular leukomalacia (PVL), I didn’t feel upset, I felt relief. Relieved to have a known instead of an unknown, to have a name for what we are facing. Now I could begin providing my baby with the support she needs.

Sure there is still a list of unknowns: possible vision and hearing impairments, where will she be cognitively, will she ever walk, will she face behavioral challenges, and will she speak? I’ve accepted that these answers may come slowly. So in the mean time I know there are inspiring moms, dads, and grandparents out there who have faced everyone of these questions. I’ll continue to be comforted by our shared experiences. I’ll provide my baby girl with the tools she needs, in similar ways to many of you, and step back to watch her thrive!

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