Not just through lack of sleep, but tired from trying to stay positive, trying to fight for everything Tilly needs, to keep a track of her development and where the gaps are. I’m tired of fighting for everything, of feeling like I’m the only person who wants to keep pushing and trying all we can to help her progress.
I’m tired of putting on my tunnel vision glasses each time I go to school to drop Tilly off or pick her up, and focus entirely on her so that the sight of all the other mainstream children doing what comes so naturally and easily to them doesn’t upset me.
I’m tired of pushing away all the negative thoughts about her and her future.
I’m tired of trying to work out what she wants and needs when she can’t tell me. Of having to carry her more frequently because her walking has really slowed down (the ankle splint she is supposed to wear is too small, and the Orthotics department can’t see her to begin the process for a new one until June).
I’m tired of trying to focus on my life outside of Tilly, and of feeling guilty for doing that.
I’m tired of feeling pangs of guilt when I spend time with Elliot, who needs less and less support, and enjoying watching him grow into a polite, smart and funny wee man.
I’m tired of this journey right now, and wish someone could tell me its going to get easier.