During one of my routine pregnancy ultrasounds they found fluid on Elsie's brain, I remember being so confused. When she was born they did a series of tests as she looked a little different and they were trying to work out if it was because of the fluid. Six weeks later we got a call into the hospital. I remember those 6 weeks so well. I forgot about the fact that there might be something wrong with my baby and enjoyed being a mum to my second beautiful little girl. Walking up to the paediatricians office, I remember thinking "It'll be nothing… everything will be fine". When they introduced us to a geneticist, that was the moment my heart started beating fast. The geneticist told me "I'm terribly sorry but your daughter has Smith-Magenis Syndrome. We have no idea what this is but she is severely retarded".
I don't remember the rest of the conversation. All I could think about was all the dreams I had made for my baby. What quality of life would she have? Going home I couldn't stop myself from crying. There were so many questions I wanted answers to but no one could help me, not even the health professionals knew. I started early intervention and intense therapies with Elsie. I pushed her to the absolute limit. They told me she wouldn't walk and by the age of three she walked! She may not be able to talk but she can laugh and it's the cutest sound my ears have ever heard!
Life is hard and there are more bad days than good, I feel like motherhood was taken away from me in a way. Instead of enjoying time with my kids I turned into a crazy lady! I am constantly researching and going to therapy sessions and doctor's appointments for Elsie. I dedicate all of my time into making sure Elsie has a close to normal life. Having three kids (Elsie in middle), it's hard to time manage everything; making sure my eldest isn't missing out on her mum helping with her homework and giving her the attention she deserves. Ensuring my youngest doesn't miss out on her mum teaching her things. I used to take little things for granted; like being able to read a book to my daughter without having to attend to Elsie halfway through the first page, taking my kids to the park and being scared Elsie will have a meltdown and we will have to come home within 5 minutes of getting there, picking my daughter up from school without being able to walk into the school because Elsie becomes overwhelmed with the amount of kids walking out. You lose friends and sometimes even family once you have a child with special needs! You stop receiving invites because I'ts either too hard for them or you have said no too many times so they stop asking. You become so isolated. Staying in a happy marriage is difficult. Running a successful, happy, clean, household is ten times harder! People become more judgemental.
BUT there are also the most amazing, inspirational people that I have had the pleasure of meeting along the way - people I couldn't imagine surviving SMS without. If I didn't have Elsie. I wouldn't be truly alive. She has taught me how to live, how to appreciate all the little things. She has taught me how to fight for what I believe in; to be strong. Her smile could melt the coldest of hearts, her love and affection gets me thru absolutely everything! As long as I have Elsie by my side I know that anything is possible. She is my inspiration. There are always going to be bad days, but it just means you pick yourself up and you try harder or do something different the next day. Each day is different and a massive blessing in its own way. I love all that she is, all that she has been and all that she is yet to become.
