Yesterday I reblogged a post by Star in her eye about Strange Luck. The piece talked about the luck the writer felt at the issues her daughter didn’t have, in comparison to other children with the same syndrome. Issues most parents don’t ever have to feel lucky about, or don’t ever think to feel lucky about.
The piece resonated hugely with me. The Peanut has CHARGE Syndrome and when we were first told this, my family and I did a lot of research about it. It seemed like the Peanut had it worse than most. Unlike many CHARGErs I could find, who are either deaf or blind with some of the other sense affected, the Peanut was both profoundly deaf and blind. She had brain issues that other CHARGErs didn’t necessarily have which made me think her sensory issues would be compounded in terms of the affect on her development.
Since that initial diagnosis I have joined up with CHARGE groups online and have realised I have a lot to feel lucky for. While it still seems there aren’t too many CHARGErs as profoundly deaf and blind as my girl, she is all in all quite healthy. I get to feel lucky her core strength is building. I can feel lucky that she wasn’t born with choanal atresia which is the blocking of the nostrils, sometimes on both sides, which makes breathing, well impossible. I can feel lucky she can cough and swallow and sigh, which means her airways and breathing muscles are working mostly as they should. This also means she can clear secretions and doesn’t need to have at-home, hospital grade suction. I can feel lucky she wasn’t trached as a baby and can breath by herself. I can feel lucky she likes to bring her hands to her face and put things in her mouth, which is a promising sign for learning to eat a bit later in life. These are not things I ever thought I would feel lucky for, and when I reflect there is a certain pain in that luck. As Star in her eye pointed out, it’s a strange luck.
Other families can feel lucky their child has part of either hearing or sight to help them communicate. Or they can feel lucky because, unlike the Peanut, they have two eyes and no cyst. Or they can feel lucky because their CHARGEr is verbal and communicative. Each parent and family will have their own list of strange pieces of luck they will hang on to.
I haven’t had too many opportunities to just feel like a normal mum since the Peanut was born. I still sometimes get taken aback when I realise that I am a mum. I am so involved in the day to day, the appointments and drop offs and scans and hospital stays, I forget that when all is said and done we are a mother and daughter.
So, in the same vein as the strange luck, I realised there is also the strange joy. I felt it twice this week already, and it’s only Wednesday. Two days ago I went to a mother’s group with some friends I haven’t seen in a long time. It was so nice. Most of them already knew about the Peanut and her needs so I didn’t have to explain her condition to anyone. No one asked about her eye or her feeding system. No one stared. The Peanut was just another baby at a playgroup and was introduced to the other babies as such.
At one stage we were having the inevitable milestones talk and I showed them how the Peanut could roll onto her stomach, hold her head up and then keep rolling around back onto her back. One mother said to me, “well, your days of being able to leave her alone on the floor are over”. The absolute normality of that statement floored me. I had been so preoccupied with the things she couldn’t do yet, that the fact I couldn’t leave her alone because she would make her way across the room almost made me laugh out loud. It was a strange joy to feel so happy at something some parents either take for granted or moan about. The Peanut is mobile!
The second moment of strange joy came when I picked the Peanut up from her in-home day care yesterday. He carer told me how far she had come in the two weeks since she last saw her and then told me she thought she could see two little bottom teeth about to poke through in the Peanut’s otherwise gummy mouth.
“How exciting!” I stammered, as if I had thought the Peanut might not get teeth.
She laughed and told me to expect a few sleepless nights as those teeth broke through.
Teething isn’t something parents get excited about. It’s something they dread. It brings grizzling, and temperatures and unhappy babies. But to me it felt like another milestone because it felt like something a normal mum and baby go through. Something we have in common with every other family.
There’s a lot that isolates mums and babies when special needs are involved. We have to throw away the milestone chart and make up our own; we have to explain our children’s syndromes or conditions, when others just say, “this is my daughter”; we feel people’s stares in public instead of strangers asking her name and how old she is. But there are becoming more and more moments where I feel like a normal mum with her daughter. Where our relationship doesn’t have to have the word “special” in front of it.
An internet friend who has been very kind to me, and has an exceptional talent with words, sent me a card a while back with a present for the Peanut. In the card she said,
“Those of us priviledged enough to follow your story do so in awe and admiration. But my hope is that we don’t create distance between us as mothers by saying things like ‘we can’t imagine’. Because of course we can. It’s imagining how you feel that builds empathy. It is not your job, or Eva’s to teach the world anything. That’s not what CHARGE is all about. Eva is whole and loved. She is human, not angel. She is your daughter and you are both full participants in this hard and beautiful life of parenting. But your story matters because it’s part of this life. To hold it close is to acknowledge the variety contained within the common. I hope you always feel visible in our community. You are a mother.”
I cried when I read this. She knew our story, but couldn’t know that I had been feeling, even subconsciously, that I wasn’t a full part of either our online mothers’ community, or the community of parents in general. That I felt a distance. That I felt like an other. I didn’t feel like part of that whole. Her words were exactly what I needed to hear, without knowing I needed them in the first place.
It’s nice, once in a while, to be reminded, either by the kind words of a friend, or the beginnings of two new teeth, that I am a mother. The Peanut is my daughter.
The strange joy does occur once in a while to tell me this and let me know our story does not illustrate the differences, but instead demonstrates the variety contained within the common.
It’s a bit blurry, but the love is pretty clear.