Disability & Parenthood

It is an honor to welcome and introduce you to our beautiful friend, Elizabeth Watch: A wife, mother of two, and one of the most joyful and resilient humans that we know.  Lizzie and her partner, James, met in London, fell deeply in love with one another, and welcomed their daughter, Mara, into the world just one year later.  Mara was born with Hemiplegia, which is a type of Cerebral Palsy.  Lizzie has been honest and transparent in sharing Mara's story through her social media @maralily_hemi_therapy and their journey as a family in supporting Mara through treatment.  Happiness and joy is absolutely at the center of this family, and we are so happy that they have chosen to share that with our community.

Q:  Mara was born with right-sided Hemiplegia, which involves paralysis on the right side of the body— Would you share more about Mara’s diagnosis? 

A: Mara had a stroke or bleed to the brain most likely during labour, it was a very difficult birth and start for Mara into the world. Hemiplegia refers to one whole side of the body being affected by Cerebral Palsy (Hemi is Greek for half) Although there are more side effects that can come with the diagnosis, too. Because every brain is different, Hemiplegia can present differently for people with the same diagnosis. In Mara’s case, she has ‘increased tone’ in muscles on her right side, hindering her walk and especially the function in her right hand. Mara’s speech and communication is also delayed, which we undergo therapy with her as well.

Q:  When did you notice Mara was favoring one side of her body more than the other? Can you tell us how she came to be diagnosed and around what age?

A:  We didn’t realize until after roughly three months onwards when she started favoring her left side and would keep her right hand tightly fisted. This continued and worsened, and when more physical milestones were delayed, we started investigating more seriously. Between six months to a year, we had an unofficial diagnosis followed by an official diagnosis with an MRI scan. We started physiotherapy from around 6 months, as we knew the earlier we started the better.

Q:  Mara is courageously active in her therapy and treatment.  For readers who aren’t familiar, what is CIMT and the casting process like? 

A: CIMT is constraint induced movement therapy and promotes the use of the hemiplegic hand/arm through constraining the other side. This can sound so cruel but it is made to be really fun! The idea is to re-wire the part of the brain that has been damaged to other parts of the brain and with enough practice, make new permanent pathways that enable function in the hemiplegic hand. It’s just like a cast you’d get if you broke your wrist or arm. It’s a very intensive type of therapy but with incredible results! It has been instrumental in making sure Mara has some function in her right hand, and she now has grasp and release, whereas before she wouldn’t have even been able to open her hand from a fist.

Q:  You’ve also mentioned the term AFO on Mara’s therapy page. Can you tell us what that stands for and how often/long she’ll be using it for?

A:  An AFO is a type of orthotic that Mara wears on her foot and ankle. Her foot also has the ‘increased tone’ and her ankle can roll.  Her orthotic is like a brace that keeps her foot and ankle in line, so that she is able to walk. Luckily, we get Mara’s made in leopard print!  She has been wearing it since around 18 months, so it’s part of her fabulous wardrobe and normal for her!

Q:  Does Mara have activities that she enjoys most, in and out of therapy?

A:  Mara will only partake in fun and quite active therapy, and we are lucky that we have engaging and kind therapists that she loves! We also do therapy at her nursery. Sometimes her friends even help her and cheer her on! Mara is a very visual, artsy and musical girl, so we enjoy lots of painting, crafts, music and wiggling around. And the TV, let’s not forget the TV.

Q:  What are some of the biggest challenges you’ve faced as a family? 

A:  Mara’s disability is the biggest challenge by far, of course.  We are dealing with a sort of loss whilst also accepting and helping our child shine.  It's a very tough journey and one that we are still taking. We have definitely come a very long way and will continue to do so as a family.

Q:  And what are some of your greatest moments as a family? 

A:  The same as the challenges! One of the greatest moments was definitely when Mara started to walk around two years and three months old (just four months ago!) Also, every time we pile onto the bed together and have cuddles...these are my favorite moments.

Q:  Do you have any routines or systems in place that help you stay balanced when things get extra tough at home? 

A:  I learnt early on that Mara could tell when I was stressed or upset.  It had a very detrimental effect, so my main practice as a mum is to not be too hard or strict on myself. I’m not exactly slow living, but I try not to make too many plans that would make me anxious. I am more than happy to have films, snacks and cuddles on hand if any one of us hits a rough patch. Self care all round!

Q:  Have you encountered situations where kids (or parents) have asked about Mara’s AFO or how she might be different from them? And if so, how have you engaged in these scenarios? 

 A:  At nursery, a lot of parents have spoken to me about Mara.  So far, no one has said anything uncomfortable, and long may it continue. The other kids want to help her and see her shine, too. My main concern is how we will approach this kind of situation with Mara, as she gets older and more aware of her differences and struggles. I think about this a lot, it’s my main worry as her mum.

Q:  Are there ways that you encourage and support diversity and embrace our differences as humans  in your home?  (Or plan to as your children grow) 

A:  This is especially important in our family and not only because of Mara’s disability or differences. Nursery is a huge part of supporting diversity for Mara, growing up alongside children of different races and abilities. There is another girl in her group who also has hemiplegia! We especially try to buy books that uphold characters who are different to her.  The online community has been huge for us as well. There are groups of parents online who all want to share information and experiences of which we benefit from massively. When we did CIMT, we did a therapy fundraiser online and the support was overwhelming. I want to use technology and communication to better things for my kids.  I want Mara to feel confident despite her struggles and to find her own way. This is impossible without educating her about other peoples differences and struggles.

Q:  Lastly, if there was one thing you wish you had learned at a young age, that might have helped you in adulthood, what would it be? 

 A:  That helping others can feel better than just helping yourself!