Hello, I’m Lauren. My husband Ben and I are lucky enough to be parents to our beautiful children Evie (4yrs) and Blake (almost 2yrs). We live in our ‘treehouse’ on Sydney’s Northern Beaches and we all love outdoor adventures.
Our life was turned upside down when Blake was diagnosed with multiple rare and complex medical conditions. But through the emotional ups and downs Blake’s sunshiny smile always lets us know ‘every little thing’s gonna be alright’ (cue Bob Marley’s ‘Three Little Birds’).
Natalie: How did your journey begin with Blake?
Lauren: Blake was born at full term, after a complication-free pregnancy and a super quick (55minute) labour. He let out the faintest little cry and as the midwife placed him in my arms he looked beautifully peaceful and perfect. Healthy weight (3.5kgs); 10 fingers, 10 toes; breathing well; strong heart. Everything had gone to plan. My husband and I cuddled him in the delivery room while I ate vegemite toast and we made phone calls to our eagerly awaiting families. We were so excited to introduce our new baby boy to them and especially to his big sister, Evie.
In those first few hours the only concern anyone had was that Blake was not at all interested in feeding. He simply just wanted to sleep. And when he wasn’t sleeping he was vomiting. At first these things were thought to be the result of his crazy rushed delivery. The vomit was thought to be purging of amniotic fluid (something newborns commonly do) and the sleepiness was, well, because being birthed is tiring!
As the hours ticked by and we tried breastfeeding and bottle feeding to no avail, Blake’s blood-sugar levels dropped to a dangerous level, a NG tube was inserted for enteral feeds, we were transferred to the Grace Neonatal ICU at The Children’s Hospital Westmead and so began our crazy journey with rare medical conditions.
Natalie: What is the name of the condition(s) that Blake has?
Lauren: Receiving Blake’s multiple medical diagnoses has been like slowly acquiring tiny puzzle pieces over the past 2 years. There are still many pieces missing, but what we do know is that Blake has an extremely rare de novo variant on the gene CUL4B. As a result of this, when the cerebral cortex in his brain was forming, it formed in an atypical pattern with too many tiny folds.
This condition is known as Polymicrogyria (PMG). In addition to that, and for reasons unknown, Blake also suffered a hemmorhagic stroke in-utero, sometime between week 35 of the pregnancy and his birth at 40 weeks + 4 days.
With these things going on inside his brain and his body, Blake has generalised hypotonia, feeding delays, speech and language delays, gross and fine motor delays, febrile seizures and multiple other things doctors like to label
Natalie: What are some words to describe Blake? What do you love about him?
Lauren: The thing I love most about Blake is his cheeky, belly laugh, which always comes out when his big sister is around. It’s my favourite sound in the world! I’m probably slightly biased here, but Blake really is the coolest little dude ever. His smile is like sunshine and he flashes it at everyone.
He loves being out and about, and is always happy whether we’re on family adventures at the beach, camping or hiking, or even just doing grocery shopping and daily activities, he loves it all! Plus he survived multiple things that can kill grown adults before he was even BORN! The kid’s a freakin superhero… What more can I say?!
Natalie: What are your worries and wishes for Blake?
Lauren: This will probably seem strange, but I’m not worried about Blake. He’s got this. We, as a family, have got this. Yes, there are many unknowns in his future and we don’t know if he will ever walk, or talk, or process information or achieve independence, but I know that we can deal with those things if or when they arise.
What does worry me is the world’s lack of understanding about people with neurological disorders. I’m worried that Blake might be bullied or that people will avoid us because they feel too confronted by Blake’s differences. I’m worried that his opportunity for adventure might be restricted by physical limitations in infrastructure because society thinks that simply having disabled parking and a ramp makes somewhere accessible.
I’m worried that people will see his worth as ‘less’ because human value, in many people’s view, is measured more by success in academics or sports or career achievements than by a person’s ability to bring happiness to those around them. I wish the world would know that different is not less, creating a world that is truly accessible to all will only benefit everyone and embracing those with differences will enlighten you in unimaginable ways.
Natalie: I’m passionate about the (special needs/medical 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? How do you get through the tough days?
Lauren: If it wasn’t for my amazing husband and family I wouldn’t have made it through those first six months. Emotionally it was a daily cycle of holding it together to get all the things that needed to be done, done… then completely falling apart.
Crying in my husband’s arms in the hospital halls, crying into my pillow, crying while expressing and feeding Blake by NG tube, crying in the shower, crying into the steering wheel of my parked car after medical appointments, crying on the phone to friends and family, crying while trying not to let Evie see me because then I would feel guilty for making her sad because I was sad… There was a lot of fucking crying, believe me. I let it out. It’s therapeutic. Thankfully it doesn’t happen as often these days.
About a year ago I joined a team in a local netball comp and we play 2 nights a week. Apart from the obvious physical and social benefits, on days when I’m frustrated by being unable to help Blake make progress in more tangible ways, playing netball reminds me that at least there’s something I can do fairly well. I don’t think my team realise how much these simple little games of netball save my sanity, but they honestly do.
So, to sum up my response… Cry and play netball!
Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?
Lauren: Hmmm… Cry and play netball?! The cry part yes, but netball’s not for everyone and actually maybe that’s the point I would want to make. Everyone copes in different ways, so do literally whatever works for you! Don’t feel as though you ‘should’ be feeling/doing/thinking a certain thing, just allow yourself to feel whatever you feel. Talk things through with your loved ones. When your child is diagnosed with a rare or complex medical condition it is a huge emotional burden to bare. Sharing your feelings will lighten your load.
Research stuff about your child’s rare condition (medical science journals are your new light reading material) – knowledge is always power in my opinion. You will find yourself in appointments with neurologists, geneticists, surgeons and many other highly educated medical specialists. It will always be helpful if you have some kind of understanding of what they’re talking about. But also don’t drive yourself crazy looking for answers that just aren’t there.
Last piece of advice – Read the poem ‘Welcome to Holland’. My beautiful friend gave it to me early in our journey with Blake and it helped me gain perspective when everything seemed way too overwhelming.
Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Lauren: We live by the sea so I always love a good sailing analogy. One of my favorite’s is “You can’t change the direction of the wind, but you can adjust your sails”. I love this, because there is so much in life that is simply beyond our control. The only way you will get anywhere is to embrace it all and adjust your attitude accordingly.
Also I have ‘theme songs’ for both of my children… songs I sing to them as lullaby’s. Blake’s is ‘Three Little Birds’ by Bob Marley.
Thank you so much Lauren for sharing your incredible journey with us. Feel free to leave Lauren a comment below.
If you would like to share your miracle moments and special needs journey, please get in touch here.
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