A smile communicates a thousand words, it sends a warm message to the stranger sitting next to you on the train, or to the cashier as you place the final item in your bag, make your contactless payment and thank him or her for their service. The smile from a child in a pushchair when your in a lift and all is quiet brightens up the metallic walls around you.
Moreover, your babies first smile is the most heartwarming, pleasurable and fulfilling early baby milestone you can ever experience. Seeing your child smile in response to you somehow communicates that you’re doing something right, they’re happy which makes you happy. It’s such a basic, simple and precious form of communication that literally turns grey skies blue and fills your heart with warmth.
I’m still waiting for my sons first smile. At 5; almost six months I’d had hoped that he would have been smiling by now. I know he can smile because I’ve seen him do so in his sleep. Whether it’s a natural instinctive motion that occurs or whether it’s in response to something his brain is recalling I’ll never know. But, to date, he has never ever smiled in response to me.
I sing to him, play with him, talk to him, blow raspberries on his neck, tickle him, play round and round the garden, and so much more to try and get him to smile, but it just hasn’t happened yet.
It is painful, because I’ve never experienced this before. Of course common sense tells me that he is unable to respond to smiles being modelled for him because he has never seen a smile before. Of course I know that many of his developmental milestones will be significantly delayed due to his Trisomy 13 diagnosis and even more so delayed due to being completely black blind.
It’s funny how the brain works, thoughts can be triggered at the most random moments. I’m actually writing this post on the aeroplane as I travel with child #4 to the Carribbean for filming. I digress, I’m very proud of her for landing herself a Television role and I’m really excited about this great opportunity for her and also for me too (7 nights of uninterrupted sleep).
Anyway, I wanted to sleep and decided to put on the blindfold from our flight pack. As soon as I put it on I started to cry. I cried because all I saw was darkness and I wondered once again if this was what my son experiences. I started praying and pleading with God to help me to be the best mother I can possibly be to Jermiah-Lee. I prayed that I wouldn’t focus on my own sadness but rather focus on the possibilities. The truth is, I’m always going to have moments like this; I don’t think it will ever end. I’m always going to be deeply saddened about my beautiful son being blind.
My mind then wondered and I found myself thinking about him not smiling in response to me yet and how much I look forward to that moment. The day he smiles and oh my goodness, the day he laughs will be the most cherished, momentous, amazing, exhilarating, satisfying and beautiful day ever for me.
I look forward to it so much. I’m even hoping that when we get back from the Carribbean that my family are able to share the great news with me that he has started smiling.
Jermiah-Lee has already accomplished so much in his remarkable 5 months of life. Everyday he is getting stronger, everyday he is proving to the world that Trisomy 13 babies are very compatible with life. Every month is a major success and Jermiah-Lee has his feet firmly planted here on earth and is an amazing addition to our family.
Being away from him for the first time in his life is a struggle at the moment. In fact being away from all of the others is a challenge. But, in all honesty, being separated from Jermiah-Lee is the most difficult thing I’ve had to do since he was born. It’s so difficult to get that balance right between all of the children and ensuring that they’re all supported and given great opportunities.
Many great things have happened for Jermiah-Lee of late. He has been awarded weekly music therapy sessions with Little Amber, an amazing online service full of resources for blind children. He receives monthly play therapy sessions. He is able to babble and loves kicking and waving his arms about. He has gained weight steadily and consistently. He gets more scrumptious by the week (in my opinion) and he gives the warmest hugs. I don’t have the words to describe how much I love my son. I can’t even express how much he has impacted and changed my life for the better. I’ve up-skilled in many areas and acquired skills I’d never ever have gained if I didn’t have him. I’m competent at passing a Nasal Gastric Tube (NG tube). I can competently NG feed, using either a syringe or a pump. I’ve learned how to effectively communicate with a blind person and could probably put together a very useful information pack for parents with lots of tips and advice.There is a saying that responsibility increases ability and that is certainly the case with me regarding Jermiah-Lee’s care.
I learnt to write an in depth care plan and I’ve learned to administer Basic Life Support with confidence. I’ve also gained knowledge about Trisomy 13 and bilateral Anophthalmia. Lastly, my organisational skills have reached optimal levels and I am a very competent and functional multitasker. All because of the addition of my amazing and gorgeous boy.
God is good, so much has been gained as a direct result of my boy.
I remember during my pregnancy thinking that my life would be over and I’d be housebound for many years with a severely disabled child, yet here I am on a aeroplane to the Carribbean writing this post. God is so good.