I have a lot to be grateful for, so I don't like to complain about our situation. I don't cry, I don't dwell on the 'what if's?' and I never forget that there are so many people who are worse off then us. The last few months have given me a new perspective on life that I cannot put into words. I appreciate every moment I share with my son. Sometimes, I pause and try to take a snapshot in my mind of those blissfully happy moments. I feel privileged and honored to have 'met' (through the wonders of social networking) other mothers who's children have survived strokes. I may never meet those woman in real life but there's great comfort in finding others who are dealing with the same issues. Having said all that, sometimes I get tired of being positive. I'm tired of trying hard to not make people feel awkward. I'm tired of the cliches that people come out with. Sometimes, you don't need to say the 'right' words to show support. Just listening is enough. So, for this post only, I'm going to indulge in a rare moment of self pity and say what I feel deep down, WITHOUT a fairy floss ending....
Deep down I'm jealous. I'm jealous of all the other mummies who don't have to do therapy with their babies all day long. I'm jealous that those babies are easily ticking off the developmental milestones and my baby has to work so damn hard. I'm jealous of mummies who have the energy to talk about petty, insignificant shit.
Deep down, I'm angry. I'm angry that a lot of my sons innocence was taken away when he was only 10 weeks old. Sometimes, when he flashes one of his trademark grins, I want to run outside and scream "It's not fucking fair. Why him?". I'm angry that he'll never know a life without therapists and doctors appointments.
Deep down, I'm scared. I am so fucking scared. I'm scared that other kids might pick on him when he's older. I'm scared that he'll have low self esteem. I'm scared that he'll struggle in school. I'm scared that he'll be unhappy. I'm scared that he'll be diagnosed with autism. I'm scared that he might need another bone marrow biopsy soon because his white blood cells have been inexplicably low for awhile now. More than anything though, I'm scared of the day he asks me "mummy, when will my stroke get better?".
Because no child should have to ask that question.
- Posted using BlogPress from my iPhone
Oh Faith. I have just found your blog recently from A baby called Max. You are a extraordinary mother doing everything in your heart to make your little man's life as wonderful as possible. Unfortunately we can't always protect them 24hrs a day from the worlds nasties. If he does ever come across these nasties, and by overcoming them, they will only make him stronger. Keep doing what you are doing so well.
ReplyDeleteKT
Thank you so much KT xxx
ReplyDeleteFaith - The huge effort if are putting in for Max is beyond anything i have seen anyone i know do for their kids - I'm sure these mums when they see your outstanding commitment and care will look at themselves and say - "well, what am I doing for my child..." really - they are the ones who should be rattled with guilt.
ReplyDeleteyou have a very handsome boy faith who's eyes say it all - if i wasn't up to date with your journey i wouldn't have known any different with the photo's your sharing.
i'm amazed at all you do, and the pure honesty of your life and the openness of your character - i hope that one day i could have your strength
Amelia
p.s There is a lady i work with who's daughter had a stroke - she's now 15, but i will email her and find out what advice she can give or any phone numbers she can pass on to you. xxoo
Phew, that was amazing. What an incredible mumma you are. More than ever I believe that we are only ever given what we can handle in this life. Max will be fine, and so will his mum. x
ReplyDelete