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 💙.
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 😊💙.