Sometimes
Sometimes I feel overwhelmed with it all, the fact that this little person relies on me for every single need. To wash feed Medicate and hold him during a seizure.
Sometimes I look mums and I feel a stab through my heart, why is my job so much harder? Why can't I have a slice of normality.
Sometimes I imagine what life would be like without my son having tsc, what would his personality be like? What would he like?
Sometimes rage consumes me when I think of the unfairness of it all, why my child why us?
Sometimes I feel so lost and alone I just want to curl into a ball and never get up.
Sometimes my life is so much harder than it should have been, my back aches my head is filled with worry and my heart hurts.
Sometimes I feel like I cannot carry on, the worry of it all and the constant battles and fighting for Kai's rights is draining.
Sometimes whilst holding my son during a seizure I look at him and wander did I do the right thing? Was I selfish to keep him? Does he hate me for it?
Sometimes Kai flashes me that smile his and all of the above melts away, he still smiles despite his struggles.
Sometimes I feel like a fraud, people think I am this tough strong brave woman, the truth is I am lost lonely and scared out of my mind.
Sometimes I rage to God and other times I cannot thank him enough.
Sometimes I look at my husband and my children and feel so lucky and blessed, my heart fills with joy.
Sometimes I have no idea how I am feeling, sometimes I just want a day off of worry, stress and problems. Just a normal mundane day.
Sometimes I look at my son and realise I could not live without him, despite the physical and mental pain I sometimes feel. I am blessed I am lucky to have an amazing courageous child like Kai.
This summer The Huffington Post UK is spearheading an initiative helping families thrive, with a focus on parent wellbeing, the challenges facing stay-at-home and working parents, friendships and navigating the landscape of modern parenting beyond the 2.4. To kickstart the campaign, Jamie Oliver guest edited the site, bringing a focus on feeding healthy families.
We'll be sharing stories and blogs with the hashtag #ThrivingFamilies and we'd like you to do the same. If you'd like to use our blogging platform to share your story, email ukblogteam@huffingtonpost.com to get involved.