Saturday, 15 April 2017

An explanation...

It's been almost nine months since I last blogged. I need to get this post over with and tell you what's been going on.





In August last year, my daughter finally got to see a paediatrician after almost a year long wait. She was referred because she had coordination problems (nothing new) and we thought she might be Dyspraxic. In the year that we waited, she saw a Physiotherapist and an Occupational Therapist who assessed her strength and coordination and gave us exercises to do at home.

Within ten minutes of being with the Paediatrician, things got weird. He found she had no leg reflexes. He made her do peculiar things like stand still and close her eyes. She couldn't do it without falling. He found a problem with her back that we didn't know existed. And he was really interested in her feet.

The doctor was concerned. I was there to find out if Connie had Dyspraxia. He said he wanted to send her for blood tests, a brain and spine scan, a nerve test and a muscle test. He was going to refer her to Great Ormond Street Childrens Hospital. My world shifted.

You know how doctors don't want to alarm you? They say they just want to rule things out. I was too shocked to ask him what he was looking for. He mentioned that maybe the coordination part of her brain just hadn't grown properly and that was as far as he'd go.

Leaving the doctors with my mind reeling, we then had to go and see a bloody film. I even let her buy actual sweets at the cinema instead of smuggling them in. I just felt so overwhelmingly sorry for her.

The minute she was in bed that night, I set about googling the tests the doctor had done. They had names. Failing them meant one of half a dozen things. So I googled them, one by one. There was this one condition that ticked all the boxes. It was also the worst.

My husband and Dad (my confidantes) wouldn't listen. They didn't understand that I hadn't just been randomly googling, but that I'd googled the specific neurological tests the doctor did. Their response was, ''Don't worry.'' I threw myself into building the wardrobe. It was my therapy but my heart was breaking.

Lots of tests followed and after five months, during which time every other thing had been ruled out, we got the DNA results back and she had tested positive for that one rare and horrible condition.

I'm not going to name the condition here. I don't like saying the word. I also have to protect Connie's privacy. This is a condition which is degenerative, disabling and life shortening. There's no cure and no treatment. It's going in one direction and we have to be careful who we share that with. You guys are fine because you don't know our real names or where we live. You won't find my blog by searching the condition.

Our worlds fell apart. The hardest thing was knowing that we had to make the best of things and be fun parents when fun was the furthest thing from our minds. My husband had a nervous breakdown. He'd buried his head in the sand for months until the very last possible alternative condition was ruled out and he had to face facts. He cried night and day, didn't sleep and couldn't function. I was five months ahead of him emotionally and I was able to get him help.

It's been a difficult time. During the lead up to diagnosis we were looking at secondary schools, not quite knowing if we'd need wheelchair accessibility to be a factor. We applied for schools with the added burden that we had to get this right. Where other kids might put up with a bad time at school and go on to do amazing things with their lives, ours would not. The school situation added insult to injury. We were rejected on Social and Medical grounds TWICE. It was absurd and incredibly distressing.

We've dealt with shitstorm after shitstorm. We found out Connie has a heart condition. We found out that she's likely to be at the severe end of the scale. There was the time one of her friends asked her if she was upset because she was going to die young. (She wasn't aware of that.) The time the Senco at school said they would no longer support our choice of secondary school. The time Connie spent 14 hours in A&E with chest pains. We've had to figure out as we've gone along how much to tell Connie and when. You don't get a manual or counselling with a diagnosis like Connie's.

We're adjusting to a different path. It's not the one we thought we were on but it's Connies path and she's been on it from day one. She was made this way. The future we thought she had was never going to be hers.

We're working through a 'bucket list' of sorts. She's not going to die anytime soon but we have a lot of experiences to squeeze into what will be a short life. And this disease is progressive so she'll never be better than she is today.

It's funny but Connie has never been happier. The diagnosis means none of her inabilities are her fault. People are kinder at school and she gets chosen for things now whereas she never was before. She's ten and ten year olds tend not to dwell on things. She'll just grow up knowing about her condition. From time to time as she grows up, aspects of it will really hit home and cause distress. We have all those teen years to come.

On a practical level, we have to build a downstairs extension for a bedroom and a wet room for when she can no longer get upstairs. We may have to take some walls down too.

I've done nothing to the house, nor picked up a single tool for six months until very recently. I guess it's been like a kind of depression. I haven't wanted to do anything.

As for this blog, I will continue. This won't become a disability blog. We won't be the poster family for this condition. It's not MY condition. I have my support network in place now so I won't be bitching about it on here.

I WILL continue to share the walk in wardrobe and the little built in cupboard I'm just making in the living room. I've enjoyed EVERY MINUTE of that. Apart from the hinges. Hate hinges.

So please bear with me. It's good to be back.

One last thing; somehow I managed to delete my entire blog list. If you've gone missing from my sidebar please let me know and I'll add you again.

32 comments:

  1. Hugs sweetheart for you all sounds as though you have all really been through the mill. And for that I am truly sorry. Its no fun at that age being different to your peers. I was only wondering the other day why had not seen a post from you for sometime. Drs never give you an instruction book either. However each day is different and to be treasured and things to do especially if its something special is something to look forward to. Life is to be lived and be enjoyed for the moment. Strength and love to you all. Pattypan x

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    1. Thanks so much. You are spot on. We have to make the most of life. x

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  2. Oh EK, I really don't know what to say to you except that I'm truly, truly sorry that Connie has been diagnosed with this ghastly condition. I can't imagine all the dreadful times you must all have been through in the past year, it's absolutely heart breaking and I admire you enormously for being brave enough to share this on your blog. Whatever you decide to post about, I'll be here... and I want to know about those hinges! Sending love and strength your way. xxx

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    1. Thanks Fiona. I've been putting it off for so long but I need to be honest about it. Then move on. A new normal... xxx

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  3. My heart goes out to you and your family, Emma Kate. I've checked in periodically to see if I may have missed a post from you and now I know why. I think your blog will be a good place to escape to every now and then to share your creativity and leave your worries behind. I'm sending you a great big hug from across the pond and one for your sweet Connie, too.
    xo, Vickie

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    1. I think so too. It'll be my therapy. Thanks Vickie.

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  4. I can't even begin to imagine what your family is going through - I am so very sorry that you were given such devastating news. Your family will be in my prayers.

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  5. so sorry to hear all this news. I have a 10 year old girl as well. You just never know whats around the corner in this life, stay strong and in NZ we say 'kia kaha'. I've always enjoyed reading your blog and having a good laugh. Have a great easter and make the most of every day xxx

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    1. Thanks Kerrie, we will. Happy Easter to you too. xxx

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  6. I don't think I have many words Emma, aside from that I'm so sorry to hear this has happened to you. Despite the bad news, amazing to hear how resilient you and your family have been. Thoughts are with you (and great to have you back blogging as well!)

    http://lizziedailyblog.blogspot.co.uk/

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  7. Goodness, that is so cr*p. I don't know what to say. Make lots of memories, take lots of photos, work those hinges!
    I send you my love and virtual hugs too. They can't really help, but...just so you know we all care about you, that's all.
    Zxx

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  8. It's weird that I decided to come back to your blog today - I think the last time I looked at it I was looking for (and totally found) guidance on how to paint my kitchen chairs (and you replied to my email and were totally sweet, so thank you!) I think that might have been around the time of the last post your wrote before yesterdays. And then life got in the way. I have mental health issues and I guess they got on top of me. I have three kids and they get on top of me too (literally and figuratively!) And then recently I started getting back to doing something about the inside of my house. I got rid of the old chairs (too challenging for a newbie, well, for this newbie anyway,) and got some different secondhand ones, smoother and easier to sand and paint, I hope. So I came back here just now. And I read your post, only posted yesterday. My God. I'm so sorry. That sounds banal, huh. Pretty useless in the face of what you're facing. But I am anyway. My eldest girl is about to be 10. Jesus. I can only imagine how you guys could be feeling. I can't think of a single thing I could do for you. There isn't one damn thing, is there. So I'm just going to tell you that I admire you,(and now not just for your blog and your awesome diy skills,) for you courage, the loving and boundaried way in which you have talked about your family and the struggles you are facing/living with. I feel for you, I wish this wasn't happening to you, to anyone really, and I wish you all the best. XXX

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    1. Thank you Ali. Messages like that help. I hope you'll show me your chairs when they're done! xxx

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  9. I am so sorry to read this about your beautiful daughter. I can't begin to imagine what you have gone through...my heart goes out to you. Xx

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  10. May God bless you & your family each and every day. All of us readers wish there was something we could do to help your daughter. I hope you'll let us know if there is any thing.

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  11. Beautiful Connie, full of life and vitality. I can't imagine how you and the family are feeling, I wish there was something I could do.
    To those thoughtless kids, none of us know how long are lives are going to be, that's why it's so important to live each day to the fullest.
    Thank you for sharing your story on your blog. Your blog is your own little space, there to sound off, inspire or keep your virtual mates updated with your life. We'll read and be there for you whatever you chose to post.
    Much love to you all. xxx

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    1. Funnily enough that comment came from someone who cared about Connie, thought she was distressed and might need to confide in someone. It shouldn't have happened but in the end it did us a favour as I went straight to the parents group and was advised by almost EVERYONE to tell C all of it asap leaving out the time scale that things will happen. As you say, none of us know the future and you can't compare any two patients. She took it really well.
      Thanks Vix. xxx

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  12. I'm probably one of many people who've followed and enjoyed your blog but never commented before. From others like me you'll have more support than you know - it's good to have you back

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    1. Thank you Fi. I felt it was important to get this post out and move on. I appreciate your message.

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  13. My lovely Emma Kate - you know you've always inspired me. I don't have your skills but you've always made me feel that the things I want to do are attainable because you take on the most difficult tasks with bravery and belief and you are REAL. I've read your post over and over desperately wanting it to be different for you, for your family and for your precious girl. Like everyone here, I want so much to find the right words and I'm deleting more of them than I'm typing because the way I feel can't really be put into words. You have another layer of support right here. Although I don't know you in real life (I wish I did) you are far more than just a blogger I read. I'm thinking of you, of all of you and, if there is anything you need, anything I can do, you only have to say (and those aren't just the right words, they are from the heart). Always here for you lovely xxxx

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    1. ''I don't know what to say,'' seems to be the common response so you're not alone there! Yours is a lovely message. Thank you. I'll seek you out on facebook so we can be real friends. xxxx

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    2. I would like that very much xxxx

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  14. Emma, it's a big step to be really truthful on a blog, especially about something so very personal and so very painful. Oh don't I know it... But I also know your friends here will want to offer you as much help and support as it's possible to do.
    It's a devastating road that you, your husband and Connie are on, and my heart goes out to you all. I think Connie is a remarkable girl, and she will show you the way.
    You're pretty fucking remarkable too.
    Sending love. Keep in touch. And keep building. xxx

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    1. I'm pretty fucking remarkable? I think that's the best compliment I've EVER had and certainly put a smile on my face!
      Thank you Curtise! xxxx

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  15. I've checked in periodically since you last posted, wondering about your walk in wardrobe. I'm so sorry to read of the reason that you have been 'away' from your blog, and like others I wish that there was something I could do, or that I could even find the right words to say. Thinking of you all.

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    1. Thank you Scarlet. I will finish writing about the wardrobe. x

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  16. I am so sorry for what you all are going through. I will think positive thoughts for you and your sweet family..

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