We had planned to have a fun day, maybe a trip into town for coffee and cake then a proper celebration on Saturday when we intended to take her to deep sea world with her sisters, cousins, aunties and grandma. Unfortunately most of the Wyllie household has covid so we’re isolating in the house all week instead!
It’s not all bad though. We’ve got cake, we’ve got ice cream and we’ve got endless episodes of Hey Duggee to watch.
As with any milestone in Runa’s life, this is another reflective time for me. I think back to the day she was born and how quickly she arrived (I was in labour for about 20 minutes). I think of the little signs that something wasn’t quite right, but there wasn’t enough evidence that anything was really wrong. I think about the 17 weeks of blissful ignorance before the seizures started…
I think about how I spent the first two years of her life not knowing what to expect, researching best case scenarios with Aicardi Syndrome and just willing her to be on the “good” side of things.
I think about the past two years and the level of acceptance of where she is and understanding of where she is going to be and what we can expect for her for the future.
I think about the guilt I feel when I’m overwhelmed with sadness that she can’t walk or talk or understand things the same as other children her age. I think about the weight of responsibility I have as a carer and how heavy it can be for me and her dad.
Then I think about how magical she is. How all of the heartache melts away when she gives us one of her cheeky laughs. I think about the affection and love she shows to the people she cares about. I think about how every single difficult moment is totally worth it because she is the most warm and wonderful human; full of personality, cheekiness, beauty and love. I love her more than words can ever convey.
So happy 4th birthday to our amazing girl. Despite our plague-ridden state I will make it as happy, fun and cuddly as I possibly can
2021 was a year of ups and downs, highs and lows and the usual seesaw of emotion that comes with every year.
As a family, we moved from our first home to our last one (I’m never leaving). We managed to see a lot more of our friends and family than the previous year (remember 2020? that was rough). And we have made significant progress with the adaptations that we need to make our house perfect for everyone who lives in it.
Runa has her new bed, we are learning to use her hoist, we have architectural drawings completed for her wet room and we are hopefully going to get her new walker very soon. Her walker will be used primarily as a standing frame, but you never know! The desire to see what happens if she pushes forward on her legs may be there.
Ru also got her new wheelchair this year and she looks so big and grown up in it. We’ve noticed her getting a little more grabby with her left hand and she continues to be the most wonderfully interactive and beautiful human. 2022 will bring big changes for our strong girl as she will be starting primary school! Watch this space for insanely emotional parents.
Everyone else is doing good. Three quarters of a year in this house and it definitely feels like home. Unpacking is not complete and decorating is hardly started, but what do you expect? We’re lazy and have too many children.
I ended 2021 on a good note. My children are thriving, my husband is wonderful and my cat is adorable when he’s not being a dick. there have been so many horrible stories and sad situations in the world this year, it makes me particularly grateful for my beautiful Wyllie bubble.
To everyone who still perseveres with reading my little blog, thank you.
I remember a few years ago, I was listening to the radio and an advert came on about Ronald McDonald House Charities. I quickly switched off the radio and wept all the way home. I then sat in the drive way and continued to sob my heart out. We never used Ronald McDonald House when Ru was in hospital, but it was mentioned as an option several times for Stewart and Nina. Hearing the name used to trigger my trauma.
I remember sitting in the cinema on two different occasions; once with my best friend and once with Nina and my sister in law, and an advert for Medicinema charity came on. I silently sat in the dark, tears streaming down my face waiting for the advert to end. Even though I never used the Medicinema during Runa’s stay in hospital, I walked past it most days. Hearing about it used to trigger my trauma.
I remember walking under an underpass with Runa and an ambulance roaring across the top of us. I stomped quickly towards a bus stop, sat down and cried my eyes out. During diagnosis me and Runa took an ambulance from Forth Valley to Glasgow Children’s Hospital. They put on the blue lights occasionally to get us through traffic. I asked the nurse traveling with us if my daughter was going to die. She wouldn’t answer, she could only say “she’s going to the best place right now”. Hearing ambulances used to trigger my trauma.
I still find it hard to hear about hospitals. I recently was reading a book, and for two chapters one of the characters was in hospital and it was a long slog. But I didn’t cry. I got through it by taking regular breaks when it started feeling overwhelming. I didn’t panic and I finished the book.
At Runa’s last hospital visit I was very anxious about being in the hospital and very uncomfortable on the drive there. But I got through it without breaking down and spiraling into a trauma response.
I think, after trauma councilling and the passage of time (time heals all wounds, as they say), I had an unrealistic expectation on myself that I would be totally fine with everything hospital related. That I would be blazé and unaffected because “I’m better now”. Because I don’t cry or have panic attacks anymore, I have felt that I shouldn’t have any negative associations with hospitals and ambulances.
But just because I’m in a better place with my trauma doesn’t mean that it isn’t triggered. It’s probably always going to be there. Maybe I need to accept that hearing sirens now only muddles me for a minute or so rather than inducing full on panic. Maybe I need to recognise that breathing deeply and steeling myself before a hospital appointment is a huge step forward from actively switching off before the appointment and crying my eyes out afterwards. Maybe I need to be satisfied with the fact that I can get through book chapters and TV episodes set in hospitals without having a complete melt down.
I also have to remind myself of why I was so traumatised in the first place. It wasn’t just about Runa getting a life altering diagnosis. It wasn’t about having a completely different future written out for me and my husband. It was plainly that I thought I was going to lose the most important thing in my life.
The bond between a mother and her child is so innate, so visceral, so instinctual and so deep that the thought of losing her child is insanity inducing.
I thought my baby was going to die, and I need to remind myself that I am justified in my trauma.
Today is Aicardi syndrome awareness day and that is why I’m sharing this with you. Aicardi Syndrome may define so much about my daughter; her abilities, limitations and medical needs. But it also defines so much about me; my identity as her mother. Living with the trauma of not knowing if my precious, beautiful three month old baby would be leaving hospital with me has left a deep and ugly scar that I have to live with every day of my life. I’m not traumatised by having a disabled child; of course my life now and forever is defined by it (my role with Ru will always have a huge element of “carer” to it). But I am so lucky to have such a beautiful, cheeky and healthy girl. I am so in love with her, inspired by her and in awe of her. But I will always be traumatised by the memories of thinking I was going to lose her.
This is the reality for parents of children with an Aicardi syndrome diagnosis and that is why I’m sharing it with you on this awareness day.
We’ve been in our new home for six months now and it has been a lovely time. Have we completely unpacked? Heavens no! Do we feel at home? Absolutely. Now we just need to wait patiently for the adaptations for Runa to start.
Now Ru has passed a specific weight marker, it is pertinent that she have appropriate equipment to keep her (and us) safe whilst being lifted, moved, changed and so on. She has been measured for a sling which will go into a hoist; that hoist will be used to move her from her bed to her chair, from her chair to her other chair, and eventually from her chair to a shower seat. We are patiently waiting for a hoist to become available to us.
Runa’s bed is becoming less appropriate now that she’s older. Years ago we bought her a low down bed so that if she rolls out of it (which she does regularly) she’s close enough to the floor to be safe. But now that she’s getting too big for us to safely lift her from the floor, it’s time she gets a bed that will keep her safe whilst not snapping our weary spines. Runa needs a “community bed” with barriers and has been approved for this by a complex needs nurse. We are now waiting patiently for a bed to become available to us.
Ru is too heavy to be safely lifted up and down stairs and in and out of the bath, so a wetroom will be designed and created using space in our garage. The big drive for us moving house six months ago was to ensure we had adequate downstairs space so that Runa can have complete ground floor living… We are patiently waiting for the architect to come round and get that ball rolling.
Runa is too big for her adapted pram and has been fitted for a new “big girl” wheel chair. The frame will be pale blue, the wheels with have planets on them, it’ll be very pretty and cool and sophisticated… And we’re patiently waiting for that.
As I have said many times, we are exceptionally lucky to live in a country that facilitates adaptive equipment and living without the need to fight with insurance companies. But the waiting game is a bit tedious. However, we will continue to wait (and occasionally kick up a fuss), because there’s nothing else for it. We need to balance our expections of time frames with our sanity, because this scenario is going to repeat itself continuously for the rest of our lives.
Other than being a gargantuan lump who refuses to stop growing, Runa is doing really quite well.
She still loves nursery and is thriving there. She loves it so much that when the buzzer goes off to announce parents arriving she starts crying. Because she doesn’t want to leave. Which is lovely, but also like an arrow to the heart!
Runa is now in her preschool year. Needless to say I’m a bit emotional! It won’t be long until she attends the local special education school. The school has a hydrotherapy pool, two Sensory rooms and a trampoline room. How awesome does that sound?
In other news with Runa, she’s seems to understand the instruction “up” when we want her to weight bear and she has also become more grabby with her left hand. She is happy, snuggly, beautiful and endlessly inspiring.
hopefully before the next blog post some of our waiting list will have been ticked off. I’d love to send an update with photos of Runa’s beautiful new wheelchair, a helpful new hoist, a cozy new bed and a kick ass new wet room. But hey! If not: Runa is worth every moment we have to wait.
I read it with a knot in my stomach and a tear in my eye. So little has changed and it stings.
It’s been a poor couple of weeks mental health wise. I don’t know what is wrong with me, but my chest has been tight, my skin has been crawling and my mood has been low.
I’m fairly good at plastering the “I’m ok” mask on. On better days I can see how strong I am, how determined I am and how capable I am.
But being a parent of a child with complex needs can’t be perpetual high fives and pats on the back. Sometimes it needs to be a bit of anguish and realistic reflection.
This journey is hard. It’s ok to let the mask fall.
I love Runa so much and I am so very proud of her. She is doing exactly what she should be doing (she has multiple brain malformations and a rare generic disorder. If anything she is doing more than she should be doing!). She is happy, interactive, curious and so beautiful inside and out. The desire to see her doing more is natural but, frankly, selfish. She is perfect just the way she is, and it’s my job to empower her, advocate for her, support her and love her.
I’m allowed to have a few bad days. Everyone is. Every parent is. And every parent caring for a profoundly disabled child is.
But I will bounce back. I always do. I’ll be back to being that insufferably proud disabilities mum, showing of my incredible girl with genuine glee.
Winter is a difficult time for a lot of Aicardi families. So many girls have respiratory issues which means it is very common for them to contract chest infections. The results can be life threatening.
I’ve taken to avoiding Aicardi support groups during the winter months because the heartbreak for families who lose their daughters is overwhelming.
Sadly, tragedy can strike at any time and it makes my heart heavy to learn that three of Runa’s Aicardi sisters have passed away in the last two days.
It’s hard to explain how it feels when someone with your child’s condition passes away. It’s hard to put into words the grief your feel for these other families; unique to any other sense of mourning.
Runa is very healthy, a fact I regularly remind myself of and never take for granted. When a girl with Aicardi syndrome dies it is incredibly sobering to think how different things could be for our family. We are exceptionally lucky.
Despite Runa’s health being on the positive end of the spectrum, the thought of losing her is on my mind far more often than I tend to admit. In all honesty, it crosses my mind every single day.
When we were going through diagnosis, barely over three years ago, I didn’t think we would be leaving hospital together. Since then I have been determined to remain in the mindset that my children will all outlive me and their dad.
This means there are steps that we have taken to keep Runa as safe as possible.
Ru has a seizure alarm in her bed just in case she has a particularly bad seizure in her sleep. To date, she has only had one seizure serious enough to set it off, and it was, thankfully, self resolving.
We have a video monitor so we can watch her in bed, and I still wake up at night to stare at the screen to make sure she is breathing.
Runa also sleeps with an anti-suffocation pillow.
Life can be so very cruel and unfair. Runa’s life is both beautiful and sad. Both inspiring and terrifying. Being her mother brings so much joy and so much fear. But if this is what it means to have Runa in my life then of course it is all worth it.
All my love and strength goes to the families who have had to say goodbye to their incredible warriors this week. There are no words that can adequately express the pain I feel for them.
It has been a few months since I last posted but quite a bit has happened since then! We sold a house, bought a house, got a new car, went for a weekend away and Ru started rebound therapy!
One of the main reasons I have been finding it hard to put pen to paper (well… Fingers to keyboard) is that my brain has been so frazzled and so frantic that I can barely string two sentences together. But as I sit feeding Alice, watching some questionable adolescent drama on netflix, inspiration has struck and I’m ready to write a post.
Moving house
Moving was quick and stressful. In fact, we sold and bought a house in the same day! Our beautiful new house has room downstairs for Runa to sleep just now; going forward our garage will be converted into a bedroom and wetroom. For the time being, the only time we have to lump Ru up and down stairs is for a bath or shower. Given she is getting so big, tall and heavy, it’ll come all too soon when she finally can be on the ground floor at all times.
In the future there are other parts of our house that will be needing made more accessible (we have ambitious plans for our quirky garden) but all in good time.
Mobility
Now Runa is three years old she is entitled to support with mobility- so we now have a spangly new car courtesy of the motability scheme! Now Runa can stay in her wheelchair and be rolled right into the car. No more desperately squeezing her into car seats! It was proving particularly problematic more recently; as her weight and height, coupled with her scoliosis brace, meant each car ride had started to feel like a game of giant Tetris. The new Wyllie Wagon is huge and perfect and just what we need for all our girls.
Rebound therapy
Rebound uses occupational therapy and trampolining to support strength and development for children with additional needs. Runa has been going to BounceT rebound therapy for a few weeks and she loves it. Our expectations for the outcomes of this therapy are realistic. We’re more interested in her having fun and getting new experiences rather than magically developing new skills. She deserves to have fun like any other child.
(www.bounct.com)
Gym bunny
I have rejoined the gym! I am now in a determined mindset to make it my life’s mission to get strong and stay strong. As Runa gets heavier and heavier and generally more awkward, I want to ensure I stay physically able to carry out every aspect of her care whilst also keeping myself healthy. I want to be incapable of looking after myself before I’m incapable of looking after her.
Holidays
We had such a lovely long weekend at the beginning of the month near Aberfoyle. We took Runa’s new “freeloader” carrier (myfreeloader.com) and it meant we were able to get off road and hike through the woods.
We are currently planning to visit grandad and his lovely significant other over the summer, but we are resigned to the fact that this will be our last trip where we don’t need to deliberately find accessible accommodation. Although it’s a little sad that we aren’t going to be crashing with family and friends anymore, it’ll likely come as a relief to everyone that the five Wyllies aren’t going to insist on imposing ourselves. And, let’s face it, it’ll be exciting seeing what different accommodation is available and what different companies and holiday home owners have done to facilitate disabled guests.
And finally
On the 23rd it will be three years since Runa’s first seizure. Three years since we went into hospital and our world changed forever. It is still a very hard time to reflect on. This time three years ago I thought I had a normal baby who would go on to do all the wonderful things I had wanted for her. Walk, talk, make friends, play sports, dance, sing, go to college, uni, get a job, get married, have kids…
None of these things will happen for Ru. But me and Nina had a conversation the other day that summed up Runa’s past, present and future perfectly. It actually isn’t important what she can or cannot do. It is important who she is. She has always been a sweet, confident, funny, loving and lovable person. And I dare say she will always be an incredible, beautiful and inspirational girl. I’m sure she will continue to teach me so much about what it means to be a human. Being her mother continues to be one of the greatest honours. It’s okay to get sad about what unfolded three years ago. It’s okay that I will need to take some time to myself over the next few days to reflect and practice self care. But nothing will ever take away from what a kick ass warrior my strong Ru is. I absolutely adore that girl.
Tomorrow Runa will turn three! Unfortunately, due to current lockdown restrictions, it will be a little bit of a subdued affair but we will make the most of it non the less.
Runa has recently started showing an interest in Hey Duggee, and in typical Wyllie fashion we have jumped all over this. For Christmas she got an interactive singing Duggee, several books and a collection of clothes.
For her birthday we are continuing the Duggee stockpiling and giving her more books and toys and clothes. We also have a Hey Duggee cake and we’ll no doubt watch many episodes of (you guessed it) Hey Duggee!
Runa’s birthday is obviously a very reflective time for me and her dad. When Runa was born everything seemed normal (there were a couple of signs, but no one picked up on anything). We then had three months of blissful ignorance, thinking everything was fine and everything was dandy. It can be very bitter sweet looking at old baby photos, pre-diagnosis, and just thinking how happy and oblivious we were. The days before we’d ever even heard of Aicardi syndrome.
With regards to Runa’s disability and Aicardi syndrome, we have a couple of recent ups and downs to share.
On the sad side of things, Ru’s scoliosis has deteriorated to the point that intervention is necessary. She has been off to get fitted for a new brace and will eventually need to wear it for 20 hours a day. The style of brace she will be using is potentially corrective meaning there is a chance that she won’t need surgery in her teens. It is still a likelihood that we need to be prepared for, but at least the doctors are giving her her best shot.
On the “that’s just Aicardi syndrome” side of things, Runa has recently changed medication to try and reduce her seizures again. She is currently having one every two or three days, but thankfully she has still never needed to go back into hospital and they resolve themselves fairly quickly. Long may this last.
So far the change in medication has reduced the length of seizures, but not the frequency… So that’s where we are with that!
On the good side of things Runa is still absolutely loving nursery and is always genuinely happy to be there. After a stint of therapy at “CP Scotland” she can now weight bear for short periods of time (with a lot of support around her trunk) and she is getting better at feeding herself with a spoon. Generally she is happy and in good spirits, loving lots of cuddles and attention.
So here we are on the cusp of another year. Has much changed for Runa in that year? No. Not much. Have the things that have changed been significant? Yes. Absolutely.
It’s not fair to compare Runa’s development to any average, neurotypical three year old. Runa has numerous brain abnormalities that cause an array of disabilities, so comparing her to friends her age is wholly unrealistic. Anything Runa learns how to do, no matter how basic or mundane, is significant and amazing. Everything she has learned to do so far has been the process of a lot of hard work from her and a team of professionals (and me and her dad, obviously).
On the outside it may only look like a child clumsily putting a spoon in her mouth before throwing it on the ground. It may only look like a little girl precariously balanced whilst holding onto a sofa before her knees buckle. But what is actually happening is a strong human doing the very best she can and defying expectations.
My girl is my star. She shines bright when times are dark. She is inspiring and beautiful. The last three years have been challenging but I can’t imagine my world without my star constantly twinkling.
So cheers to another year of little triumphs and lots of love. Cheers to another birthday for this strong, inspiring little girl. And cheers to all of our amazing friends and family who support us and love Runa for the wonderful person she is.
I have a lot I could say about 2020. I even have quite a bit I could catch you up on with Runa- some good, some not so good.
But I think I will handle updates and specific blog posts in 2021. For now I hope you enjoy this video. You never know, maybe I’ll take up vlogging next year…
It is the 2nd annual Aicardi syndrome awareness day. Today is an important day to me personally as it recognises the condition my daughter has as a primary diagnosis. Today I hope lots of people will be specifically thinking about Runa and her Aicardi sisters, brushing up on their understanding of the condition and maybe even wearing pink and purple clothing- the Aicardi syndrome colours.
In my house it is obvious that this is far from the only day we think about Aicardi syndrome. A day doesn’t go by when we don’t think about it as it is an intrinsic part of Runa- so much of who she is, is influenced and affected by this condition.
When thinking about the effect Aicardi syndrome has had on our family, I started thinking specifically about what it has meant for Nina; Runa’s big sister.
Someone once said “If you want to know how to treat a child with special needs, watch their siblings”. This is so very true. We could not ask for a more loving, caring and understanding big sister for Ru.
Nina wanted a little sister who would learn how to walk and talk. She still watches her friends with their siblings and sees what she wishes she had had with Runa; Someone to play with, teach nonsense to and get infuriated by.
Nina and Runa haven’t had a typical sibling relationship, but Nina has never shown Runa anything but love and affection. On the rare occasions when she has shared what she wishes Runa could do with her, she always instantly follows it up with “But I love her just the way she is.”
Nina works so hard to be inclusive, knows how to make Runa smile and laugh and boasts about what a wonderful little sister she is to everyone. Nina is so resilient, so caring and just the most perfect friend, advocate and sister Runa could ask for. (I am sure time will show Alice to be just as wonderful).
When thinking about what an amazing sister Nina is, I decided to have a conversation with her about Aicardi syndrome and share her experience this awareness day:
What does it mean that Runa has Aicardi syndrome?
“It means that she’s a little bit different from everybody else but I still love her just the way she is”
(Nina, as always, loyally adding the datum that she loves Runa just the way she is.)
What is different about Runa?
“She has a thing called seizures that most people don’t have”
From very early on, even before we had an official diagnosis, we have been honest about Runa’s condition with Nina. As Nina has gotten older, we’ve been able to discuss aspects of epilepsy with her more clearly. We think it’s important that if she sees her sister have a seizure she isn’t scared, understands what is going on and watches us to know what to do.
What happens when Runa has a seizure?
“She maybe can’t move about that much. She can’t move her arms and even if we hold them up, they just fall back down. And her eyes go to the side and sometimes she dribbles a bit”
Most of Runa’s seizures are focal, meaning they start in one part of the brain and she stays conscious throughout. She can display a variety of behaviours. Sometimes it will be a subtle drooping of her mouth and nothing else. Other times she may become very distant and begin twitching and lip smacking.
What do we do when Runa has a seizure?
“We have to look after her and I always try my best to look after her”
As of yet Ru hasn’t needed rescue medication and we’ve only been back to A&E once since diagnosis. We have so far been very lucky that her seizures have been self-resolving.
What’s your favourite thing about Runa?
“My favourite thing is that she’s very fun and she’s very clever- she can do lots of things that other people with Aicardi syndrome can’t do”
Runa is amazing. Given her wide array of brain malformations it is incredible that she is so healthy, strong, interactive, affection and capable of learning (very slow to learn new things, but capable non the less). Nina saying that Runa can do things that others with Aicardi syndrome can’t can sound quite harsh, but it is not my intention to compare her to other children. However, it is natural to see other children with her condition and think how different things could be.
Aicardi syndrome has a wide spectrum. There are many girls who are developmentally far less challenged than Ru; able to walk, talk and interact in more traditional ways. I’d be lying if I said there wasn’t a pang of envy when I see these girls. On the other end of the spectrum there are girls that are considerably more affected by developmental delays. The majority of girls with Aicardi syndrome have significant feeding problems, uncontrollable and relentless seizures and often need intervention to help them breathe. No matter where these girls are on the spectrum, they are incredible, resilient, unique and strong. Runa is perhaps half way along the developmental spectrum and, so far, is very much on the healthy side. It’s never fair to compare your children to anyone else’s, but it helps sometimes for others to see why we celebrate the little victories. Why we get excited about our child, who is almost 3, just learning to do things that a baby under a year could do with ease. Why we are amazed by her sitting for more than thirty seconds or babbling or laughing or putting a spoon in her mouth. Seeing how easily our family could be in more challenging position with the same diagnosis means that we are overwhelmingly grateful for what we have.
What’s Runa’s favourite thing?
“She likes to play with me. I make her laugh and show her funny faces and her toys.”
Runa is a fairly passive person. She loves being around people and watching them. For this reason, nursery has been amazing for her. The Staff at her nursery have told us she gets so much enjoyment from watching her friends play.
Do you know why Runa has Aicardi syndrome?
“There’s a part of her brain missing”
Nina understands that Runa’s brain hasn’t grown in a typical manner. She also understands that our brains are responsible for everything we do, which is why we find Runa so amazing. She still manages to be this happy, wonderful person despite everything that has gone “wrong” in her brain.
How does it make you feel that Ru has Aicardi syndrome?
“A bit sad, but I like that she’s very clever”
Sadness about Runa’s condition isn’t something Nina talks about often. She, like the rest of us, likes to focus on the positive. But she is fully entitled to find it a bit sad sometimes. We all are.
What do you think Runa will be like as she gets older?
“I think she might need a wheelchair. I don’t know if she’ll be able to get a job or have any children. But I can still look after her”
As a family we work very hard to focus on the here and now, but conversations naturally arise about the future. Nina will talk about what she wants to be when she grows up; an astronaut, a doctor…ruler of the world…
She doesn’t ask what Runa will be when she grows up anymore. She understands that Runa will always live with us and is very unlikely to be able to have a job. Having said that, as the world becomes a progressively inclusive place there have been more opportunities for even significantly cognitively impaired adults to volunteer and gain experiences in some work places. Whether or not this will be an option for Ru when she’s an adult is obviously yet to be seen.
Do you think Runa is happy?
“I think she’s mostly happy and I think we’re really lucky to have her”
Runa is a very happy child. She has her moments, particularly when she’s tired or we’re trying to make her do physio, when she gets very grumpy. But the vast majority of the time she is happy. She has a wonderful quality of life, surrounded by people who not only love her but genuinely adore her. She is the most likeable human and everyone who meets her can tell what a character she is. Like Nina says, we are lucky to have her. Not lucky in spite of anything. Not stretching the definition of ‘lucky’. We are just lucky.
How do you think people should treat children with Aicardi syndrome?
“I think they should treat them like they’re perfect just the way they are.”
And there we have it. Nina has summed it up perfectly.
Feel free to share this blog to raise awareness about this rare condition.
Developmentally Quirky 