This picture was taken last August in Croatia. I felt like my life was very surreal at this point after my Stargardts diagnosis. I felt pretty lost to be honest and panicked that I needed to see more and experience more of this world that we live in, before my eyesight declined. In hindsight, I would love to see more beautiful places and travelling does make me happy, but I get just as much joy at home daily watching my beautiful boys grow.
It has taken me a lot of time to realise that there is joy in every day, whether it be at home or somewhere else. We don’t have to just look forward to experiencing the big things, but make sure we find some joy in all of the little things we do too, after all it’s the little things that make the biggest difference x
So tomorrow I will be 36 weeks pregnant. This pregnancy has really
flown by and it’s scary to think I had Harvey at 38 weeks so may only have a
couple of weeks left, eek! I have come out in a horrible cold the last couple
of days and I’m struggling to sleep at night as much as I was because I can’t
get comfy at this stage anymore. I have noticed a big change in my eyes the
last couple of weeks which in the mornings, sometimes make me panic first
thing. I can only describe my blind spots as like looking through honeycomb
when I wake up and it lasts a good half an hour until my eyes have settled.
This has also started to happen when I get tired later on in the afternoon too,
but then doesn’t seem to last as long as in the morning.
My eyes also, in the last few days, seem to have excessive
flashing especially in my right eye which just doesn’t settle at all and is
really frustrating, I just hope if it is permanent, I adapt and get used to it.
All in all, I can’t moan about this pregnancy as it has been relatively easy
once the severe morning sickness eased at 15 weeks (and I haven’t even had
heart burn this time!), but I am saddened at the deterioration of my eyes. I
just hope they settle somewhat after I have had my baby boy, but if they don’t,
I know he will have been worth it all.
I totally understand there are other mums who are dealing with a
lot worse than I am and I am lucky that my Stargardts disease doesn’t cause any
physical difficulties for me, but every week when I go to my pregnancy relaxation
class, I have to admit I feel envious. I would love to be like the other mums
who can just enjoy their baby fully and take in everything about them. I can’t
deny I am sad that little bits of my baby boys face will be missing as I look
at him and I will struggle to do up his little poppers on his baby grow or that
by the time he is at school I really won’t have any clue which is my child. I
always try not to think too far ahead as none of us know what is around the
corner and it is best to just live for the now, but it does make my heart heavy
when I think too much about my vision and what I will lose. All I know is that
vision loss doesn’t stop you from being a good mum, it just changes the way you
have to do things and hopefully, like Harvey has done, this little one will
adapt with me on my vision loss journey 💙.
After the sadness of my appointment last Friday, and dealing with
the fact that my eyes are progressing, I had totally forgotten our 4D baby scan
was booked for the following weekend. At the time, I booked the scan after
Moorfields, in case I received bad news and needed something to look forward
to. When the reminder came up on my phone last Sunday, excitement washed over
my upset. I can’t deny I was slightly apprehensive about the 4D scan even
though my baby seems to be doing well and is healthy, but you just never know
if they will end up picking something up that has been missed, or discovering
something that needs monitoring, so although I was really looking forward to
seeing our baby properly for the first time, I was slightly nervous too.
We went to the same private scanning facilities that we used for
Harvey’s 4D scan and as soon as we entered the car park, all the memories came
flooding back and at that point I was just really looking forward to finding
out what our little boy looked like. Harvey hasn’t been allowed to any of the
previous scans on the NHS, so it was so nice to bring him with us and share
this experience together as a family and also to help him bond with his little
Once we were in the scanning room, I was instantly relieved
because there was a large screen at the end of the bed I had to lie on. With
the previous scans, I have really struggled to see at the time, which broke my
heart if I’m honest. The screen for the 12 and 20 week scans were right up in
the corner of the room and really small and it was just so hard for me to make
out our baby and everything the sonographer pointed out to us, so knowing I
would see all of the 4d scan was amazing! As soon as the screen went on
and we saw our little boy properly for the first time, I completely fell in
love. His little button nose and sweet little face filled my heart with love
and to watch Harvey seeing his brother on a screen for the first time is now
one of my best memories 💙. When the half an hour ended, we even caught a little smile on the
screen from our baby boy and then I knew that even if pregnancy has progressed
my eyes, it’s been worth it, and I wouldn’t change a thing. I can’t wait to
properly meet my little boy now and see how different or similar he may be to
Harvey and to watch their bond grow in person. Life definitely has its hard and
unhappy moments, but I’m so grateful to my 2 boys for giving me so much joy and
happiness to hold on too xxx
I have thought long and hard about posting
this blog post and then I thought that at the end of the day, I use this to get
my thoughts and feelings down and my thoughts and feelings are valid. It’s not
my intention to offend anyone, just to give my opinion.
appointment is coming up soon and I can’t even express the anxiety and worry
that this has created inside of me. I have been crying at the drop of hat, yet
people seem to suggest it is my pregnancy hormones. This is my exact point
about the lack of understanding when you are dealing with progressive vision
loss. If you are reading this and not going through vision loss, put yourself
in the position of someone who is. You know at your appointment, you are not
miraculously going to be told that your vision is suddenly better and your
disease has magically disappeared, you are going to find out that possibly the
disease or condition has stabilised, but more likely, it has progressed,
especially the stage that I was at when diagnosed. Then you sit there and try
and work out letters on a chart that you may not be able to see anymore and
feel the heartache that comes with that and then imagine having to sit there
and find out if you are still able to drive, that there is a possibility that
your independence is going to be ripped from you in seconds. No more running
errands, little trips to the shops unaccompanied, time out for yourself having
the freedom to go and do just what you please, that no longer exists. Even if
you are lucky and keep your licence, you understand it’s only a matter of time
before it goes. Well-meaning people telling you they will take you places if
you need it and then the time comes and you don’t fit in with their schedule or
they have their own busy lives to attend to, so you are stuck trying to work
round bus timetables if you are brave enough as you have never had to use them
before and can’t even see what they say. The stress of dealing with public
transport when you struggle to even see your own face in a mirror and then this
is where I get confused and what has been playing on my mind. The same people
who avoided me and said nothing after my diagnosis of Stargardts, congratulated
me on being pregnant. Why do we find it so easy to talk about the good stuff
but never the bad? What makes people feel so uncomfortable that they feel they
can’t discuss something in your life that impacts you on a daily basis?
I can guarantee
when my baby arrives, people will want to come around, people will offer you
help, people will offer to have the baby whilst you sleep, to pop and see you
in the day. Greg will get two weeks paternity leave from work to spend time
with me and the baby, give us support when everything is new again. I will have
a health visitor come around to discuss any concerns. This is the sort of
support I needed after my optician discovered my disease, the support I needed
after my diagnosis at Moorfields, the support I need on the run up to my
appointments. I couldn’t function properly from being in a state of fear after
my local hospital suggested I had Stargardts and was going blind. The next day
everyone was back at work and I was sat on my own having to deal with what was
inside my head. There was no support offered to me from the hospital, just left
to deal with my new life. And then we are left wondering why so many people
with vision loss or blindness are left with depression and anxiety? If my
appointment in a few weeks’ time was an operation, people would more likely
discuss it, wish us well, give support after, because an operation leaves
something visible, something others can see that indicates we are hurting and
in pain. Vision loss doesn’t do that.
I feel there is a
massive lack of support for people losing their eyesight between the ages of 25
and 50. There seems to be very little out there for us. When my baby is here
there are plenty of baby groups I can go to, to meet others and discuss
parenting problems, but there is nowhere for me locally to go and meet up with
people my own age and discuss my vision loss. I know this is because we are in
the minority and there aren’t many of us dealing with this, but something would
be nice all the same.
We hear countless
times how many people overuse social media too, articles about people sat on
their phones too often and not paying attention to people in actual life. Well
the support I have found online has been immeasurable. People online know more
about my thoughts and feelings than the majority of people in my daily life,
because they talk to me. They ask me how the run up to my appointment is going,
people I have never even met take the time to ask me and sometimes that is all
that is needed to offload some of your scary thoughts. I honestly don’t know
how I would cope without support I gain from my phone. We have become a society
of well-wishers but shy away from other people’s problems. Maybe we are all
under so much pressure in this day and age, it’s just easier to deal with our
own issues, maybe we are more open when we talk online, but quite often for
people, social media is a big support network and shouldn’t be belittled.
I apologise that
this post is quite negative for me, but some days I feel angry inside at the
lack of understanding and interaction I get about Stargardts. I honestly don’t
want it to be my topic of conversation daily, far from it, that is not what
this post is for at all, but since becoming pregnant it has made me realise
just how much others struggle to discuss it and if I am honest, it disappoints
me greatly. We don’t need full blown support through the good times we need it
a lot more through the bad and scary times. I am used to waking up in the night
without being able to get back to sleep and feeling so overwhelmed I don’t feel
I can do something, but Stargardts has done that to me, a new born baby will be
a blessing. It certainly won’t be as difficult as discovering that one day you
won’t even be able to recognise your own children in front of you, now that is
the hardest part of this journey.
I finally feel brave enough to discuss my pregnancy now we are
over half way and had our 20-week scan 💙! I feel I have been in hiding with it for the past few months,
but this time round I have been so sick. Morning sickness wasn’t just in the
morning and through the months of November and December was relentless and 24/7
of feeling sick and actually being sick to the point I was prescribed anti
sickness tablets to get me through my worst days. But that’s all in the past
now and am feeling great in the second trimester thankfully!
When I was diagnosed with Stargardts in 2017, my hopes of having a sibling for Harvey were completely crushed. I had to wait several months to determine whether I had the dominant gene that would be passed to Harvey or any other children we may have, or the recessive gene that would stop at me. Thankfully I have the recessive gene, so Harvey and any other children we would have, stood a less than a 1% chance of having Stargardts too. Then there was the fact that with subsequent pregnancies, my vision may deteriorate, so this was something I had to really consider. Although the specialists at Moorfields reassured me that pregnancy shouldn’t have any affect on my Stargardts, I am aware that this hasn’t ever really been properly studied and talking to other people from the support groups made me realise that actually, pregnancy can possibly progress the vision loss. Some peoples will go back to normal after the birth as it is hormone related and some peoples won’t, so it was a big decision to make.
Looking at my life and what Stargardts has taught me, is to live for the now and don’t think too far ahead. There is no point in being scared of my vision progressing quicker now, as it may have anyway. The fact is, my vision isn’t too bad right now and I would have a lot to give another child and for me, I didn’t want Harvey to have all the worry of me and my eyesight by himself when he is older, that is something I seriously had to consider and think into the future about. He already worries if I lose my driving licence and he never passes his driving test so he can take me places and it breaks my heart that his head is full of things like that at such a young age. I’m hoping his new little sibling will be a welcome distraction from the sadness that we had before.
I have my check up at Moorfields in April, so I will know where my vision stands then and whether it is on the progression, but until then, I have a nursery to plan, little blue clothes to pick out, baby boy names to think of and lots of little boy toys to stock up on. Stargardts will have to take a back seat for now, it won’t be stealing this joy from me 😊💙.
As 2018 draws to an end, it has made me reflect on the year that I
have had. When I was diagnosed with Stargardts in 2017, for a good few months
it honestly felt like someone had ended my life. I was lost, confused and
scared for much of the rest of that year following my diagnosis and I was
consumed with the feeling of ‘why me’. I was grateful when my little boy
suggested that we do something to help my condition in the only way we could
have, and that was to raise money for Stargardts, so at the end of 2017 we
started up a just giving page and signed up for the eye to eye walk in London
ran by Moorfields eye charity. Throwing myself into that and having so much
support from others going in to 2018, made a big difference to my emotional
state. Instead of feeling useless by something I couldn’t change, I felt like I
was doing something to help myself and for the first time since my diagnosis, I
felt my spirits lift and felt motivated.
After the success of our eye to eye walk and raising over £2000
for Stargardts, I decided that because my condition was so rare and very little
people knew what it was, I was going to try and raise more awareness. In May
2018, I started up an Instagram account to bring more attention to juvenile
vision loss. Instagram proved to be an exceptional support network for me, and
I have met some amazing people on it this year who I speak to regularly and
have become my firm friends. It is amazing how complete strangers can be so
much more supportive than some friends and family, but that has been the case
and I am so grateful to everyone who has been so kind to me.
For my 33rd birthday, my husband took me to lake Garda. We decided
in 2018 we would see more beautiful places and my gosh, it was one of the most
beautiful places I have been to and will stay in my memories forever.
In August I didn’t let my anxiety get the better of me and I went
on my local radio to talk about Stargardts and how it affects me. I have to say
I was so proud of myself for this. It may come easy to some but speaking like
this live on air was one of the most terrifying things I have ever done, but
I’m so glad I did it and raised more awareness. I was on such a high after the
radio interview, I decided to start up a blog and my website katiesvision.co.uk
At the end of August my husband took me to see Britney Spears who
I have wanted to see in concert for years (she didn’t disappoint) and we went
to beautiful Croatia with my mum and step dad too and had a great time, lots of
laughs and pretty scenery. Another gorgeous place ticked off and more visual
I decided to start up a U.K. based support group in September for
others diagnosed with Stargardts and juvenile vision loss. I decided on this as
I felt so alone when I was diagnosed, I didn’t want anyone else to feel the
same. I remember the first thing I did when I was told I had Stargardts was
look for a support group on Facebook.
I found some but a lot were American based, so I decided it would
be beneficial to have a U.K. one. I hope people who have joined have found it
as useful as I have and it’s nice to know there are others out there, although
I wish none of us had this.
In the October half term, my husband booked
a surprise trip to Brixham for all of us which was a much-needed break and as
pretty and quaint as I hoped it would be. We had a gorgeous apartment overlooking
the sea and did ok with the weather!
Throughout the year I did a newspaper article on my support group
and an article for enable magazine on my condition and helped the macular
society bring more awareness to younger people with vision loss. We also had
lots of lovely days out to the beach, London and got a National trust card.
Reading back on how my 2018 was, makes me feel a little emotional.
It also wasn’t without its down moments. It showed me who I can rely on and who
truly cares about me. I now know who is there for me and who really isn’t. I
know the people who tire of me discussing Stargardts and I can see in people’s
faces who just want to keep me motivated and strong. Some people tried to bring
me down in 2018 at the lowest point of my life, but I carried on regardless.
The thing with vision loss is, unless you have been diagnosed with it or are
living it, you can’t ever truly understand how devastating and life changing it
is. Some people can’t seem to understand that one minute I was ok and the next
I was going blind. That’s ok, I can only help raise awareness, but I can’t
eradicate ignorance as much as I would like to.
I don’t make New Year’s resolutions, I never have done, but I hope 2019 is as fulfilling as 2018 was for me. I am so grateful to all the people that lifted me out of the darkness and told me I will be ok, supported me and told me to keep going, and gave me the strength to do that, I can’t thank you all enough. The one thing I do know for 2019, is that I will be putting the same amount of effort and energy into what people put into me. I don’t have time to waste on negative energy and I will carry on raising awareness for Stargardts and vision loss until the day I am told there is a cure.
Happy new year everyone ♥️🎉 thank you for following my blog and look forward to sharing more posts with you next year xx
I have to be honest and say, I adore Christmas time, December is my favourite month of the year. Last Christmas I felt like I wasted the month by being very disorganised and dwelling on things too much and making myself stressed by trying too much to please others. This year I have already wrapped most of the gifts I have bought people and have decided that it will just be the 3 of us eating at home on Christmas Day this year. To save any hassle, I have ordered a lazy Christmas dinner that is all prepped and veg chopped ready to pick up from the supermarket just before Christmas Day, so I can spend as much time with Harvey as possible and just shove it all in the oven for an hour with minimal fuss. If it isn’t very nice, then I know my mum’s dinner on Boxing Day will make up for it!
We have done quite a lot this month to get in the Christmas
spirit. We went to a national trust Christmas market and looked round the Manor
House that was all decorated with beautiful Christmas trees and pretty lights.
They also had a light trail that was gorgeous and we all really enjoyed it. We
also took Harvey to Thomas Land over the weekend as a pre Christmas surprise
and he was so excited when we got there, it was very magical and Monday me and
my mum treated ourselves to a posh afternoon tea at a luxury hotel in the
countryside, just because we wanted to, which was also very festive!
I have tried to focus on the now this Christmas, but at times it
can be very difficult. It saddens me so much when the lights don’t shine as
brightly anymore on my tree, or trying to film my little boy on a ride at
Thomas land, I couldn’t make out easily which child he was and ended up
filming someone else and getting fed up with a Christmas film because it’s just
too tiring to focus on the TV for so long these days. Inside my heart breaks
and for a split second I feel anger rise up inside me and I think why has this
had to happened to me, but I know deep down it’s not a healthy way to live. The
fact of the matter is, it has happened to me, I am losing my central vision and
I can’t do anything about it. Instead of the negative response I have been
struggling with, I have been trying to tell myself, why shouldn’t this of
happened to me. Yes, it is sad, but my life is continuing despite my eyes failing
me. If my eyes have declined, I have adjusted and I will continue to adjust the
more they decline and my life can be as amazing or as sad as I let it, I am
controlling it, not my Stargardts.
So this Christmas I will make as many visual memories as I can,
instead of feeling sad and dwelling on what may be in the coming years, I will
live for the moment and I will watch my little boy race down the stairs on Christmas
morning full of excitement and anticipation with this little hair standing on
end, unwrapping his presents Christmas morning with joy in his eyes and I will
sit with my family and eat our Christmas dinner whilst talking and enjoying
each other company and I will embrace what I have now and not what I have lost,
because I know deep down, my life could be worse and I am lucky to be spending
the holidays with people who truly love me and who have got me through the hard
times. I don’t want to look back at my life when my eyes are a lot worse and
wish I had made the most of what I had, I want to do that now and I want to do
it well ♥️ hope everyone has a lovely