My daughter is now 17 months and I have only just accepted that it is ok to mourn.

It’s ok to mourn the life I had envisaged for my daughter, my other children and myself.

It’s ok to mourn and cry out loud to say this isn’t how life is meant to be.

I should just be worried about what playschool has the best reports not which playgroup has the equipment to support my daughter in her disabilities.

I should be worrying about my daughter’s first cold, not worried about the fact her kidneys don’t work how they should be.

I shouldn’t worry about meeting children that are the same age and wondering if that day I will be strong enough emotionally not to cry as they are all walking around, and talking where as my baby isn’t.

It isn’t the fact I am jealous and don’t find joy in seeing this, but it reminds me how delayed my child is, how different my baby’s life is going to be.

How hard she must work to achieve things that should come naturally and with ease.

It’s ok to mourn for the stress-free childhood I had wanted for my other children, the sort of childhood where they can run and play in the woods chasing each other without a worry in the world except for how messy they can get.

We have started to tell them little bits about their sister’s condition as they have noticed she isn’t as developed as she should be.

They shouldn’t have to worry about this, they shouldn’t have to see their parents rush to hospital as their sister can’t move, they shouldn’t have to worry about making their sister laugh as when she does she struggles to breathe as her throat closes causing her to suffocate.

They shouldn’t have to worry about the fact their sister doesn’t understand them, that their sister just looks puzzled when they talk to her.

They should be getting frustrated that their sister is messing up their room, that their sister is drawing over their school books or trying to use their bikes even though she is too young and too small.

They shouldn’t even know that children can be disabled. Yet they live with it every day.

It’s ok to mourn that my life’s plans have stopped abruptly.  That we have had to move from our home to a new place to accommodate my daughter’s needs.

It’s ok to mourn the fact that my career came to an abrupt stop and that although I love my little part time job, it is not what I had envisaged for myself at this point in life, my qualifications sitting in a folder, for the foreseeable future not seeing the sunlight.

It’s ok to mourn the relationship I used to have with my husband, one where it wasn’t stressed, one where we laughed every day, one where we knew what the future held.

I love my daughter, I would go to the moon and back for her, but that doesn’t mean I can’t mourn for what I thought our life should be. 

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