10 months into our new life with the gorgeous little E I have learnt so much science and medical information that it makes me wonder what the heck I did all through secondary school!! (mucked about and fell asleep mostly- oh and flirted with the boys!!) I have found amazing support via face book and feel like I have made good friends with mums of Escobar babies from all over the world, the USA seems the most advanced and knowledgeable (there aren't many of us so we closely stick together) Including little E there are now 5 in the UK, One older woman of 25 years, 2 gorgeous sisters and a little boy and then little E is the youngest.Its amazing to have found them all and I have learnt so much from them.
I'm learning to cope with unexpected questions and reactions, I'm gradually learning how to speak to the doctors (with direct don't mess me about tone!) and I'm unwillingly accepting the chaos of appointments and hospital stays.
But I don't think I will ever get used to the stares.
Today Little E is 10 and half months and she has finally cut her first tooth. "Our little pumpkin got teeth" The sun is shining and little E has got a tooth, its all I needed to put me in the best of moods, I was beaming with pride and had a real spring time stride in my step.
My mum and I went into town to get little E a sun hat as her eyes are very sensitive to the bright sunshine. From the car park to the shop i clocked every single person stare, look away then stare back.
Thinking I was being paranoid I took a deep breath and held my head up high but there was no getting away from the blatantly obvious head turning stares that my little E gets. It bothers me.
Why does it bother me?
She is a head turner with her bright red hair and big blue eyes and cheeky nature. yes some do stare because of that but I can see the ones that look with pity. When my mum pushes the buggy I sometimes walk behind and i hear the comments "Oh that poor baby" "oh dear I wonder whats wrong" "is that baby on oxygen?" JUST ASK ME!
I cant be the only mum with a disabled baby in town can I? where are they all? Are they hiding away because they cant be bothered with the stares? Maybe I will get to the point where I don't want to go out. I'm not sure I could have coped on my own today. Its hard being stared at all the time.
During our lunch (Little E being fed via her NG tube with a gravity feeding set) a mum and her toddler approach me and all flustered she says " I just wanted to say that I'm in awe of you, how well you are coping and how difficult it must be for you, I find my "well" daughter hard enough work"
"Oh thank you" is all I can bring myself to say.
At first I'm pleased she has spoken to me, that was nice I thought.
Then I felt weird..... A total stranger is in awe of ME? why? I'm just a mum feeding her baby. I don't want to feel as different as people make me feel.
I don't want little E to be different. I will probably embrace it as time goes on, but right now I don't want to accept that my daughter is gonna get stared at her whole life.
When we got home we were laying on the floor playing and she was staring at me and it made me cry; happy and sad tears. I don't want anyone to make fun of her. I looked into her big blue eyes and I made a promise to her that she will grow up knowing that she is perfect, and amazing and the toughest hard arse cookie that ever existed!!
I can hear big D in my head saying "Stop Worrying!!!"
I'm so proud of her and I just want to gobble up her cuteness, I don't want to dwell on her problems or constantly worry about them.
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| Es and Nana xx |
I know how upset you get but I am sure that most of the stares are thinking what a little darling she is. Look at that couple in the tea room yesterday the were so interested in what you told them and I think you are right people should ask you outright what is wrong with your darling little girl. But you see we as a family don't see the tubes, the oxygen we see a precious daughter, sister, and granddaughter and I am sure with our support she will get so much confidence as she grows up she will be able to brush off any unpleasant commentsd or stares so I think as long as she has got the greatest mum and dad she will cope very well and so must you. I love you
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I could have written this a few years ago! We still deal with the stares and occasional rude questions, but we have learned that for the most part people aren't intentionally being rude. Something about our kids instantly draws people to them. When we go out, people speak to Reece and I don't even know them! People remember them, and I know it's the Lord using Reece to shine His light. Continue to hold your head up high and just know those stares are stares of jealousy. They don't get to experience the pure joy of raising a little light like you do!
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