Willow's CP Journey

Instagram has introduced us to some of the greatest people.  It's such a great way to target your searches by use of hashtags and find people you instantly feel a connection to. One of those Moms for me is @willows_cpjourney.  Highly recommend following them, she posts beautiful pictures and gears her posts to be productive and inspires her followers with different Therapy-related ideas and activities. I always find myself commenting aloud with, "Now, THAT is clever!"

Willow's Mama, Tara,  was so kind to email back and forth with me, because life is cray.  I'm excited to share this with our devoted Fifi and Mo followers.  While we offer fashion tips and share aspects of our journey, Tara provides useful tips that every Mama of a CP warrior should see! She's collaborated on a great Ebook and we cannot wait to download it! 



How was Willow diagnosed?

"Willow came into the world a little too early, at 29 weeks, and spent her first 6 weeks in the NICU. Routine scans showed that she had damage to the brain, this is when we were confronted with a never ending list of complications and disabilities that she could [potentially] have, one of which included Cerebral Palsy. She [later had an MRI that resulted in confirmation of brain damage.] She was 7 months old when she was officially diagnosed with, "Right-Side Hemiplegia." We weren’t surprised, but it was still a huge shock - which left us feeling a mixture of many emotions.  When she was around 14 months old, her diagnosis changed to "Dystonic and Spastic Triplegic Cerebral Palsy."


What made you decide to do this book?

"When Willow was 10 months old, I decided to document her journey in a private instagram account that only my husband knew about. I documented the therapy and physio activities we did at home, along with the good and the bad days. Doing this helped my husband have more understanding about Willow's disability and it turned into a therapeutic way for me to cope with the emotions l had in regards to her new diagnosis of Cerebral Palsy. A few months later i decided to change the account to a public setting. I did this for a couple of reasons.  In hopes of connecting with other cp families, to give my own family and friends the opportunity to learn more about Willow's diagnosis, and most importantly to share our therapy ideas and also find new ones.  

My background is as an Early Childhood Educator and love nothing more than getting to create activities for children, so coming up with ideas to combine physio and therapy into play came easily and naturally.  To be able to share this with other families, who perhaps are struggling with this side of their journey has been the most fulfilling experience, and has become a great passion. I never in my wildest dreams thought that we would connect with so many people and everyday was so humbled by the msgs of support we received and to have strangers all over the world thanking me for sharing our ideas is incredible.

After a couple months of being on Public- l was approached by a physiotherapist, named Margaret, who owns the therapy resource site (www.yourtherapysource.com). She was interested in working together to come up with a resource for special needs families to assist in their own home therapy programs. This just seemed like the next natural step and l am thrilled to be a part of it."

Who inspires you?

"I have been fortunate enough to have many inspiring people in my life, but during the last couple of years the people that inspire me most are other special needs families. They give me so much courage and strength.  They inspire me to keep going and stay positive on those really hard days.  The days where you are angry, upset, and frustrated. Becoming a special needs mumma has been a hard, scary and isolating journey- which l really struggled with at the start. While the hard days are still there, they have become easier to deal with. I believe this is due to our connections with other CP families. It always puts things into perspective and I am inspired everyday by these families!"

The Star of the Book:

"Willow is a feisty, determined and cheeky 2 year old, she has proved the doctors wrong from the start and continues to do so. It was thought that she would never crawl and at 20 months she DID, and hasn’t stopped since. We have been told that she won’t be able to walk independently and will need mobility equipment such as wheelchairs and walkers as her means of moving. She recently took a few independent steps!  What l have learned from this journey so far, is to NEVER say, "never". Do not underestimate the power of determination, love, and positivity."

So, head on over to their instagram- give them a warm greeting- and tell em we sent ya!