It’s the moments that I can’t prepare for that get to me. The first time was during a consultant's appointment to discuss why my little girl wasn’t reaching her milestones. I can’t remember what I was expecting, but I wasn’t expecting my beautiful eight-month-old to be picked apart. I saw my perfect little baby; she saw dysmorphic features, low set ears and a carp shaped mouth. That particular consultant relabelled my daughter that day – she drew a picture of her that I had not seen before and, for a while, I looked at my baby differently.
Learning our own way to describe Global Developmental Delay so our family and friends could understand (I prefer the term ‘we don’t know’ as GDD is not a diagnosis, but a label that can cover many conditions). Learning not to pin too much hope on each hospital appointment. Learning to deal with the ongoing mini grief of rewriting the future we had planned – a future in which we don’t know what to expect as we don’t have a diagnosis.
We are learning to cope when we are blindsided. Like the first children’s party where the realisation hits us that our child is now so far behind her friends that they have moved on; the play dates where the developmental gap is so big that you end up playing alone with your child instead; the first tour of a special school when all we want to do is cry, but smile instead (whilst desperately looking for another child that looks like ours so we can tell ourselves that we are doing the right thing).
My husband and I talk about ‘it’ a lot more to each other and to family and friends. We share the moments that blindside us and it really helps.
I remember being in a low place a few years ago and talking to a friend about my experiences and fears. She was glad I had opened up because she had no idea how we felt. Sometimes though, only a good cry helps.
We are learning to adapt. We are getting used to having a child with additional needs. At first we used to try and make her fit in with our lives and our plans; getting frustrated or upset when things didn’t work out. Now we are more open and realistic about what works for us and our family.
The biggest lesson we have learned has come from our daughter. As she has grown she has started to stamp out her place in our world. Yes it was different to the one we imagined but she didn’t care. She is happy. She loves life and has a massive personality. You know when she is around and she is taking you with her. What right do we have to be sad for her? She’s not – she doesn’t know any different and we will fight to keep it that way as long as we can.
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