My name is Becky, I am mummy to our beautiful twins Violet and Henry. Our babies are true miracles, born after years of heartache and loss, with a little help from science (IVF). Violet and Henry are now fully into their “terrible twos” phase being 2.5 years old. We are a very happy, although not average family of four.
Violet is an incredibly brave, determined and amazing little girl. She blows me away everyday. She is certainly just as cheeky and naughty as her twin brother, if not more so! Although currently non verbal, Violet communicates really well through expressions and little vocal noises to emphasise choices. She is incredibly expressive and has the most beautiful big eyes and infectious smile.
We share Violets journey in a number of ways. Mummy has a blog called Rain Makes The Flowers Grow. A Facebook page called rainmakestheflowersgrow and an Instagram page called @cpwarriorprincess. Violet has featured for a charity called Unique and also in posts for Firefly by Leckey on FB and IG. We love their GoTo seat and Splashy bath seat.
Welcome Becky & Violet
Natalie: How did your journey begin with Violet?
Becky: Violet was born without the suckle reflex and we had severe difficulties getting her to feed. Violet then developed silent reflux and spent months in agony, not gaining weight. It was a terrible time for us all.
Once a solution to Violets cows milk protein allergy and silent reflux was found in a new hypoallergenic formula milk we noticed developmental delays.
Up until seven months of age Violet had spent most of her days arching her back and crying/screaming. Once this decreased and eventually stopped, the differences between Violet and her twin brother in their abilities hit us full force.
I had that mothers instinct that something was wrong. I acted on that feeling and persevered until we got some answers.
Natalie: What is the name of the condition(s) that Violet has? Can you share with us a little more about it?
Becky: Violet suffered HIE (hypoxic ischemic encephalopathy) brain damage around the time of birth. We only discovered this when she had an MRI at 21 months old. HIE has a lot of associated medical conditions.
We have been advised by neurologists that we will not know the full extent of the damage caused by HIE until Violet is around 4 years old. So more conditions and health issues could pop up.
As a result of Violets brain damage she also has Quadriplegic Dystonic Cerebral Palsy. This is the most severe type of cerebral palsy, affecting all 4 limbs. Violet has dystonia, this means she has frequent involuntary movements, these mainly affect Violets arms and legs.
Violet has severe hypotonia (low tone) in her trunk (tummy/chest) so is unable to sit up unaided. Violet has lots of specialist equipment so that she can be as independent as possible. This includes a seating system, standing frame, walker, specialist trike, specialist buggy and a specialist bath seat.
Violet has been lucky to avoid a NG tube for feeding. She is on a diet of puréed foods and thickened liquids. We are working on her oral skills as she has limited control of her tongue currently, this affects swallowing and moving her food around her mouth.
She is a fiend for cheese puff crisps (chips in the US) – these dissolve quickly and are helping Violet learn to eat foods with texture as well as helping her make her way up the milk ladder. For those not familiar with that term, it’s basically introducing milk back in to their diet gradually and building up a tolerance for it over time. We have a very long way to go until Violet is back on dairy but it’s amazing that she is tolerating it so far!
During the diagnostic tests we discovered Violet also has a rare chromosome disorder called 15q 13.3 micro duplication. This can cause a number of associated issues such as epilepsy, insomnia, feeding problems, communication and developmental issues.
Natalie: What are some words to describe Violet? What do you love about her?
Becky: Fearless, Brave and Cheeky. She is the bravest and happiest person I know. Her smile lights up the room and everyone she meets falls in love with her. She LOVES anything even slightly dangerous, definitely an adrenaline junky! And she has the best sense of humour!
Natalie: What are your worries and wishes for Violet?
Becky: I have no doubt our courageous and determined girl will be as fiercely independent as she can but she will still need our support.
The thing that has me awake at night is the thought of what will happen when we get too old to care for Violet. That’s my biggest worry. I also worry about placing too much responsibility on her twin brothers shoulders.
My selfish wish is that we get to hear her beautiful voice and have conversations about all manner of things. That would be incredible.
My biggest wish for Violet is that she has the happiest life, however that may turn out. That she experiences the love of a partner and the many joys the world has to offer her.
Natalie: I’m passionate about the special needs and self care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how do you cope? Are there any self care practices that helped you on your journey?
Becky: In all honesty, this journey has been incredibly hard and lonely. You feel so isolated from the “ordinary” world of mothers. I’m still struggling with aspects of Violets diagnosis but what helps me the most is connecting with other mothers in similar situations. Woman that can understand everything you are going through and will go through.
Finding “my tribe” has been key to me getting through this so far.
So I would say support groups, Counselling, time out for yourself to be you again – not just Violets mummy and quality time with your husband/partner are all essential. As is spending time as a family doing “normal” things like going to the park or beach. Don’t become hermits! Get out in the world.
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Becky: Find fellow mums that are in the same or similar situation to yourself. Whether that’s via FB groups or pages, Instagram accounts, blogs or even via charities. A great support group is essential to keep you going and also you find out a huge wealth of information about your children’s conditions that the medical professionals won’t and can’t tell you. To hear other mums experiences gives you a much better understanding and comfort in knowing you are not alone.
If you feel comfortable, share information and include your families as much as possible. Again to get that extra support you may need.
Don’t feel ashamed or embarrassed to ask for help if you need it. I have contacted numerous charities and support groups over the last couple of years for help and support.
I have also asked for help from my GP in maintaining a healthy mental state. It’s draining, exhausting and so full, on you can forget to take care of yourself. You must take care of yourself as you need to be fit and well to care for your little ones that rely on you.
Natalie: What are some lessons and blessings you have learnt since becoming Violets mum? How has it changed you as a person?
Becky: A huge lesson for me was how uneducated we are as a society about disabilities. It has been a massive learning curve for myself and my husband as well as our family and friends.
That’s what prompted me to create the social media outlets to share Violets journey. Awareness needs to be promoted and encouraged as much as possible.
I have realised how amazing my family and friends are. Their love and support has been awe inspiring. They have been exactly what we have needed. Of course I have lost many “friends” along the way too, those that just don’t understand or are tired of me pulling out of social events last minute. You definitely find out who your true friends are along the way.
We have been so fortunate to live in a country where there is such fantastic support and therapies available. Yes, I have had to fight tooth and nail for most of them but they are available to fight for. I am so thankful for that. I cannot imagine not being that lucky and having to struggle as thousands do without these.
I have discovered I am much stronger, resilient and patient that I ever imagined. But I have also discovered that I’m poor at communicating my feelings, bottling those feelings up and leaving it a little late to ask for help. I’m working on it!
I’m not the same person I was a few years ago. Our journey has shaped us into different versions of ourselves, stronger (most of the time), more tolerant and real champions of our children’s accomplishments whether inchstones or milestones.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Becky: These are my favourite quotes;
“A smooth sea never made a skilled sailor” ~ English proverb
“You will not always be strong, but you can always be brave” ~ Beau Taplin
“We have this hope as an anchor for the soul. A hope both sure and steadfast” ~ Hebrews 6:19
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