Excited to share with you just a little bit of wisdom from one of my favorite mommy-daughter duos that I follow! Tara and Willow show that cerebral palsy cannot limit creativity or the ability to play! Tara has blown my mind with her ability to create practical, yet effective ways to turn her home into the perfect therapy environment, but above all it’s all in the name of fun – which is exactly how therapy should be.
Even more impressive, Tara has not only shared her therapy tips through social media, but has published an e-book with the help of a physical therapist, which details all of the activities and their benefits! I mean, Tara is remarkable and with the help of big sister, Ava, there is no doubt that Willow is one extraordinary little girl! I could go on and on about how important this little family is and all that great things they are doing for cp families online, but let’s go ahead and hear from Tara and her perspective on cerebral palsy.
1). There is a lot of learning when you become a parent to a child with cerebral palsy. What’s one thing you have learned so far?
This special needs journey has taught me so much but if l were to narrow it down l would say patience. Skills and milestones don’t just happen a lot of work goes in to make them happen. Once l really learnt to be patient l felt that the journey became a little easier and l was able to enjoy all of the little accomplishments that came before the bigger milestones.
2). Life wouldn’t be life without its ups and downs. What have been your highs and lows in raising a child who has cerebral palsy?
Definitely a continuing roller coaster of ups and downs. If l were to narrow it down l would say the hardest parts are when l have taken Willow to places such as the park or parties. It’s always a reminder of the things Willow can’t do and guilt sets in. Guilt that things are harder for her and you just can’t fix it. Another low would be when you go to a physio or therapy appointment and leave feeling overwhelmed and stressed about fitting in everything that needs to be worked on. It’s a never ending list.
Now onto the good stuff the highs……. Definitely the top of the list is when a new skill has been mastered, little or small. It’s never taken for granted and always celebrated! Another high is when you actually go to an appointment and leave feeling positive and that gains have been made. One more just because highs are what get you through. It was recently actually, Willow was surrounded by all of her little friends and was able to walk alongside them in her new walker all by herself. Her face was priceless and she was beaming. It was a happy moment!
3). There are a lot of misconceptions about special need parents/children. What’s one thing you wish everyone knew, or something you wish people would stop asking/saying?
One that comes to mind straight away is when people see Willow and comment ‘oh look at her she just wants to walk’ or ‘she will be walking before you know it’ harmless comments that come from an encouraging place but when they are said on one of those ‘this is all too hard days’ (which is often) they just get to you. One thing l wish people knew is that being a special needs journey is actually really isolating. It doesn’t matter what your support network is like or if you are surrounded by other parents to share parenting stories. No one truly gets it and it can feel very lonely.
4). There are parents who have a child with a disability who are just starting out on this journey and are scared, feeling hopeless, and don’t know what the future holds. What’s a piece of advice you would share with them?
l have had a fair few parents ‘new’ to the special needs journey who have reached out to me and l just want to give them a big hug. I always answer anything they want to know with over the top lengthy replies. Finding out your child has special needs is one of the hardest and scariest times of your life. You try to think positive and in my case convince yourself that you are and have accepted the journey but it takes time. I honestly think l have only just started to accept Willows diagnosis.
Once you get to a place where you do start to accept it l find that things all fall into place a little more. You are stronger and are able to deal with it all a little better. Some advice is to let yourself be angry you are aloud to be. Nobody wants there child to struggle. You have every right to be angry, confused, upset…. however you feel, let yourself feel it.
Another big tip is to be kind to yourself. Some days it’s too much, if you don’t fit the therapy in one day. It’s fine. Your human. If you need a week off give yourself one. Sometimes you need to escape. This may mean you have a phsyio and therapy free week, it also might mean you dedicate some time just to yourself. Whatever it is take care of yourself. Being a parent is demanding enough being a special needs parents is extra challenging meaning you need to look after yourself.
The journey is overwhelming, scary, upsetting, tiring and exhausting BUT it is also rewarding, unique, special, beautiful and inspiring. It takes you into a whole new world where you get to witness your amazing little ones grow to be determined and strong little warriors. Everything is celebrated and that’s a pretty exciting thing to be apart of.
I cannot say enough good things about Tara, because she has been so encouraging and supportive of our journey despite the fact that we face different challenges. It’s a beautiful thing to see parents who face adversity and still choose to use their story and think of ways to help others, so I thank you Tara for the opportunity to share your story and for always being a bright light!