That yes 90% of the time life is harder than it could have been but there are those little silver linings that make you smile from ear to ear.
1) Every milestone you celebrate: my older children I can just about remember their first word if I really think and scratch my head.
However with my baby I know that the first time she reached out for a toy she was 8 months old. That the first time she could be bathed without me in there she was 13 months.
That the first time she moved she was 4 weeks old and it was the tiniest movement in her fingers.
I don’t know the first time my children bathed in the big bath, I don’t remember the first time my children reached out for a toy, and I don’t remember the first time they cruised around the furniture.
Each inch stone is massive and so memorable and this is what you need to cling onto.
2) Science lessons: I got good exam results in science however since having my baby I have learned biology that I hadn’t even realised existed.
I have learnt more about DNA then I did in my whole entire coursework module of DNA. I have learnt that if your kidneys are doing this then it causes this.
I have learnt that the blood only holds so much information and that if you want to know about the brain you really need to use spinal fluid.
I have learnt that if you have an ankle that is turned in this causes twisting in the hips and other problems.
I have learnt that the body still has mysteries we haven’t discovered.
3) Sleep: for me I have a child who rarely sleeps and is awake 22 hours a day. However I also have a child who sleeps for 22 hours a day.
I have learnt that your body somehow can battle through on zero sleep. That the exhaustion is always there but somehow your mind can trick you into thinking you’re not tired.
It has also taught me that when my son who never sleeps is at school I have a baby who has a condition which makes her sleep excessively and so if the exhaustion is too much I can have a nap during the day.
I know not all parents can do this and realise how blessed I am to have this.
4) Support: I will admit sometimes people ask things about my baby that I find inappropriate however I am so happy that people are continually asking about how my baby is doing.
That they are constantly asking how we got on at hospital appointments. That they go out of their way to say that they have missed you and have been wondering how well she has progressed.
The support from random strangers is amazing, the support I get from family friends and family is amazing and although I always knew they were there, it is just special how people genuinely are interested in how your baby is doing.
5) Last but not least, I have a wonderful unique baby. I have a baby that is full of determination.
I have a baby who has taught me not to be down about things you can’t change. I have a baby who is beautiful.
I have a baby that fights to do things other babies take for granted and this just shows that she is such a fighter. I have a wonderful baby who is amazing and who is so special.
I thought I knew everything as she was my 4th baby and yet she has taught me so much.
Children with disabilities do bring so many challenges but I like to make a list at the end of the day about 5 brilliant things they have done in the day.
Even on a day where all I can see is negative situations it is something I make sure I do.