The one that gets forgotten 💙

When I was diagnosed with Stargardts last year, my little boy had only just had his 6th birthday. At 6 it gets a lot harder to hide things from them. Obviously, the days after my diagnosis was mainly spent with me crying, not eating, not being able to sleep and generally acting like nothing my little boy had experienced from me before. Sometimes as much as we try, we can’t keep things confined inside and although as a mum I try to do my absolute best for Harvey, I just couldn’t stop my emotions, so inevitably Harvey started to ask questions. Because this disease wasn’t going away, I answered his questions honestly and told him that mummy is gradually losing some of her vision. I sat with him and showed him pictures of what it may look like as it gets worse, what things I may end up not being able to do like driving and that sometimes I may need a bit more help than I did before.

I honestly can’t remember one person asking me “how is Harvey”, after my diagnosis. I understand that it may seem like a random thing for someone to think to ask, but when parents separate or when a parent is physically ill, people consider the child, why don’t they with vision loss? Harvey is the one who asks me where my sunglasses are when I go out for fear my eyes may get worse in that little journey, he is the one who holds my hand at night and gives it kisses when I tell him mummy can’t read tonight because my eyes are too tired or if the light isn’t bright enough for me to see the words, Harvey is the one who cuddles me and says I wish I could make your eyes better mummy, he is the one who constantly checks my phones on night mode and explains things to me that are out in the very distance 💙 I haven’t tried to drag him into this, but he is the biggest part of my life and vision loss unfortunately includes him, and I couldn’t be prouder of the way he has handled it, my amazingly beautiful caring boy -x-