Ella

Late night

It’s 3:00 in the morning. This is ridiculous! I should be asleep!

I woke up to find that Chipmunk had crawled in to bed beside me. I look at her sweet face, and thoughts are rushing into my mind that I just need to record.  My heart is hurting as I look at her.

Last night she snuck downstairs after she should have been asleep, saying she was scared and asking if I could say a prayer with her before she went back to bed. (How am I supposed to say no to that?) She cuddled into my lap, and we started talking about tomorrow morning. You see, it’s a kind of important day tomorrow. She has an appointment with a consultant paediatrician tomorrow. I’ve talked to her about going to the doctor, but I try to not make too big of a deal of the appointment to her. I said I was looking forward to having a little time with her tomorrow, and that if she was good, maybe we could sneak after and go for McDonalds for lunch. Her little face lit up at the prospect of a Happy Meal, and she whispered that it could be our little secret.

But then she said the words that are running through my mind now and keeping me awake at 3 a.m. As she snuggled into my shoulder, she paused and whispered intently “I have lots of pains and problems through my whole body, Mummy. Maybe the doctor will help me.” I asked her what she meant, and she replied that her body hurts her in lots of places, so I asked where some of the places were that hurt, and she pointed to her hip, her knee, her feet and then gestured like it could be anywhere else. Pumpkin is only six years old. I know I can’t protect her from everything, nor should I, but surely I want to protect her from physical pain? Everyday she tells me of something that aches, and sometimes it feels like a typical little girl who wants attention for her boo boo, but the thing is, she is always talking about it. She comes home all the time with bumps and bruises or complaining that her tummy hurts. Just tonight her ballet teacher came out from class to tell me how she had been doing well, but then she suddenly span into a wall and hit her head.

I’ve grown accustomed to the bumps and bruises. Chipmunk’s coordination is not the best. It isn’t the worst either, but she still struggles with the most random things. She trips over her own feet all the time, can’t go more than a few feet with a scooter and can’t seem to do things other children don’t hesitate to do (like how she brings me the tube of toothpaste every night because she can’t open it for herself.) Tonight though, it felt different. I don’t think she was talking about hurting herself, but it was about aches. The places she pointed to as causing pain, were areas she has never said anything to me about. There are moments as a parent that you just know you need to take your child seriously. This was not a little girl who was attention seeking. She was confiding in me–helping me understand something that she has not previously found the words for.

After kisses and getting sent back to bed, my husband worriedly asked if she was saying these things at six years-old, what more is there to come? There aren’t answers for that though, are there?

So, tomorrow. This referral came as a bit of a surprise. Tidbit’s physiotherapist had warned me that times would come where my girls would struggle with growth spurts and might need extra support. She mentioned that I’d probably notice an upswing in them hurting themselves during these times, and that she might seem more awkward physically than before, and that might be a good time to ask the GP for another physio referral. So I went to the GP again when she was suddenly coming home with new bumps and bruises every day. He looked at her mobility again, and commented that she was clearly hypermobile still, but after hearing that I have a diagnosis of Ehlers-Danlos Syndrome, he asked if he could add an additional referral to have her evaluated for EDS, and thus we have tomorrow’s appointment. I don’t think I’ll get anything definitive tomorrow. If anything, she’ll probably just be referred to a rheumatologist or possibly a geneticist. But she might not have anything happen too.

Doctors don’t like sticking labels on kids. I can understand that, and it’s often right, but there’s something that feels wrong to hear your child complain every single day that their tummy hurts, that their bowels are having issues or that their legs, feet or many other parts hurt. We’ll see what happens tomorrow. Most doctors don’t look at EDS in younger children because little kids are often hypermobile on their own and may outgrow it. I think we’re past that stage though. So now it’s that familiar fear settling in. I’m looking for support, and just praying that this doctor tomorrow understands why this is important. Praying they will have a clue, and we’ll know where to go from here. Please, help my little girl. Only time will tell, I suppose.

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