• 1marthasmith

Not Quite Yet.



Come out, they say. Come and see us, come and stay.


Thank you. Thank you, thank you; it is wonderful to be wanted. I would, if I could, but I can't. Not quite yet.


When my boy was small and freshly diagnosed, my world shrank to stifling smallness. Leaving the house was tough, let alone going to someone's house for a cup of tea. The trusted few ignored the screams and served drinks around the meltdowns, stepping in when my eyes filled with tears and they knew that I was heading, guiltily, for the door. A visit to a cafe, simply so someone else could wash up my mug, became aspirational. So I stopped the wanting and started the waiting. I would be able to do these things but not quite yet.


As he grew and his ability to communicate in signs, pictures and eventually words increased, so did my freedom. By that stage I barely knew what to do with myself. On his first day at pre-school I hovered nervously at a friend's house, with an actual HOT cup of tea, pacing the floor with my phone in my hand, feeling his absence so keenly that I felt as if I was only half dressed. The next day I went to a market alone and bought myself a huge bunch of flowers and a take-away lunch. I felt almost euphoric.


Time together allowed a type of freedom but one with restrictions. There were strangulating routines, heavy negotiations, lengthy preparations. But, if the gods smiled upon us that day, we could go out and visit people, or things, or places. We walked the same way around one sprawling English Heritage site, each time we visited, for seven years.


Now, the meltdowns are less frequent and, with notice and agreement, we can, more often than not, go out.


I can also leave the house alone. For years I was the 'always invited, never expected' friend but now I go out every Tuesday night to take a college course with a group of fellow enthusiasts and I am challenged, mentally stretched and have the time of my life. Every single Tuesday I laugh, every single Tuesday I relax. Every single Tuesday I am me.


Every single Tuesday I return home near midnight and see my eight year old daughter open the front door for me.






She is petrified of me leaving the house. Her fear of me leaving her behind is extreme. She draws me pictures and leaves them on my bed, ransacks her room, fights off sleep to keep herself awake. My Tuesday freedom is her Tuesday hell and it is so damn hard knowing that she is suffering because I go out.




For years I went nowhere. I forgot who I had been and became simply the person who fulfilled my children's needs, day and night. I never, ever completely switched off and I shrivelled.


But I have tasted freedom again and I can't give it up. I won't give it up. I need it like I need the air to breathe and it makes me bolder and braver and more able to tackle the day to day challenges of life. Very often it is the only thing standing between me and my next nervous breakdown.


So I will hold on to my Tuesday nights, knowing that it is hurting my daughter. I will see the tears rise in her eyes as I kiss her smilingly goodbye and try not to cry when I get to the car. I will grasp my Tuesdays as fiercely as I hold on to my children and I know that, if my little girl can learn to cope with the lack of me for one night a week, there may be other things I can do, other people I can see, perhaps even for longer.


So thank you for your kind invitation. I will come, I want to come, I promise. But not quite yet.

MS Parent Advocate is a supportive blog focusing on the challenges and wins of parenting children with additional needs. Based in Hampshire Martha runs workshops for schools and other education providers in Surrey, London & Hampshire on how to improve empathy between teachers and parents.

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