This morning, I put Evelyn down for her nap and when, five minutes later, she complained loudly about having to fall asleep, I picked her back up again. I tucked her under my chin and we paced the floor, snuggled together, while I listened to Neil Gaiman talk.
She snuffled my neck and wound her fingers into the tufts of hair behind my ears, tugging gently.
The talk finished and I put Evelyn down, patting her gently. She fell asleep and I was left looking at her. Baby soft cheeks and milky smell and I am so worried about her.
She has no depth perception, you see. She flinches when we walk in front of her, or we wave our arms, or something moves. She can’t judge where that thing she wants to grab is. Every new thing I notice is like a check mark against her; against the possibility of normality.
Last night, I rubbed her tummy while she fell asleep, feeling so lucky to have her. I watched her while she seized and seized and seized, thinking that if we end up having to go to hospital every time she seizes for longer than five minutes, I’m never going to spend any time at home.
Her tongue trembles, and she holds the tip of it arched up to the roof of her mouth. Her gross motor skills aren’t improving. She still has head lag when I pull her to sitting. Her shoulder joints slide around under my hands.
I worry about her, because no one know what is going on.
And yet – when I leave the room, she cries. She is amused by kisses. She watches her siblings avidly. She soaks everything in like a sponge. Her mouth moves in response when I talk to her. Cognitively, she seems very much like an almost nine month old baby, even if physically she can’t master anything she’s meant to be doing.
I like facts. I like to know what is going to happen. I like plans and progress and an idea in my head. I like these things because they give structure to my unbridled imagination that is always darker than my reality is likely to be. Because if someone says unequivocally “Your baby has X” then I know what X means and I can stop waking up at 3am, worried that she is dying.
This is what it means to be waiting and seeing. It means I pace the floor with my baby, listening to Neil Gaiman talk about throwing things to the wind like dandelion seeds, while I try to impress the smell of my child into my brain, just in case.
Because like he says, no one knows what will happen. No one knows where an idea will land.
And sometimes, that is the scariest thing of all.
Oh Honey, I feel for you, I really really do. She is just the most gorgeous little doll, but I can understand what you mean about just wanting to “know”, just needing to know, so you can feel more grounded. When my son was diagnosed last year, it was almost a relief hearing those words “crohn’s disease”, just because then I knew and I could research and get facts. So, I do know and understand what you are saying…..xo
I honestly don’t know what to say. As I have no ideas or suggestions that may help. All I know is you have a beautiful baby girl who is loved by many, and in the thoughts of many.
Ohh honey, I don’t know what to say either but know that you and your gorgeous bubba are in my heart and thoughts xx
Thinking of you and your gorgeous babe
Much love
Xxxxxxxxxxx
Firstly, I can’t believe that your baby girl is 9 months old already! Where has that time gone?!
Secondly, answers… yes how you want an answer .. so that yes you and your family know what is wrong and how your gorgeous girl can be helped … I do hope that Dr B can give you some positive news soon and that you also get the answers to the biggest question .. “What is wrong with my baby” …
Hugs x
If I think too deeply about Evelyn I can feel the panic rising and I start to have a tiny hyperventilate. I started to panic yesterday when I was talking to you, that is why I changed the subject and then when I saw the hurt in your eyes as I dismissed your concerns, I tried to explain. But I couldn’t. Not properly.
You get your love of plans from me, you get your vivid imagination from me and you get the everyone is going to die a grisly death scenarios in your head, from me as well.
I learned a long time ago to live in the moment. And as I live in the moment, in THIS moment I can not fix Evelyn, I can not help you fix Evelyn and so because I am powerless, I will think about how deeply worried I am tomorrow and in all the tomorrows, not today.
Being a grandmother is so, so wonderful, but the other side of the coin means that as you worry about your daughter, I also worry about my daughter.
Evelyn is so lucky to have your fighting in her corner, to have a mum so dedicated to finding the answers to all of the questions. If only the answers would come so much quicker for you all. Sending you big squishy hugs.
I can’t stand not knowing, either. It’s been so many months, with no knowing, and I don’t know how you manage. It feels so selfish to know that I can just press the “X” and close this tab, and go back to my life, with my healthy, ill-behaved kids, and try to put it out of my mind, while you are stuck iving in it.
If I lived near you we could hang out in my dirty kitchen and chat about everything but while we share some laughs. But I’m stuck on the internet, a hemisphere away, and I have the option of just closing this tab.
And I’m really sorry, and wish I could do more.
This is what hope was invented for. This is when faith shines.
I love that you still notice the positive signs, and are starting to tease them out from the seizures and the physical components xxxxx
xxx
Neil provides good brain fodder for the thoughts. I’m glad you are not a dandelion parent. Xxxx
I’m still listening, and I’ve changed my mind on dandelions xxxxx
I wish I had the words to say to calm you and put your mind at ease – the best I can do is hope and pray that you get some answers, and some peace, sooner rather than later. With love xx
The best I could think of, to help with your search for answers. It’s a full article, not just an abstract – read past the French (it’s a Canadian article). Try not to worry – be gentle with yourself. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2606074/
I won’t pretend to know what you are going through, because I really don’t, my four were and are so normal and healthy. I understand your worry and the need to know, and the frustration when answers can’t be found. 🙁 Has Evelyn been tested for cerebral palsy?
Hard to believe she is nine months old already, didn’t you have her just last month? 🙂
I am so sorry. Of course you want to know. I can’t imagine how hard this must be. Sending you and your absolutely adorable baby girl lots of positive thoughts and hugs.
There’s really nothing I can say that can help, so I’m just going to send on some love and hugs, and comment here so you know I think of you all often. xxx
I completely understand. I have a picture that I had taken of my 6month old baby because I did not know if she would reach 7months. She is 30 this summer, God bless you and your beautiful baby.
Hugs. I have no words that will help but I’m sending love.
As much as society hates labels, it’s times like these were the name of the illness becomes to important. I have a question, if it’s not too personal, if so, just ignore: has Ev been looked at for ED, among everything else?
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