So here goes......
Regular readers of my blog will know that for 13 years we have been trying to understand what the matter with Ellie is. Its been a battle fraught with tears and emotions and knock backs. It's made me lose my mind and my trust with the NHS. We have been to hell and back via Nevada with hospitals and out of over 170 hospital visits (well up until yesterday) all we know is that Ellie has weak muscles, has photo-phobia, cannot walk properly, is under weight and has a prolapsed mitric valve (in her heart). There is no name for this condition but we know it falls under Muscular Dystrophy.
Every time we go to the hospital we are met with "come back in 6/9/12 months" or "we cant help you" or "she will always be like that and we cant say why". And we are still non the wiser. This hurts. It means we can't have a relationship with like minded and like affected people who can support us. Trust me, when you need a lifeline with a child who has a rare condition - YOU NEED A LIFE LINE. You need a place to vent and share stories and sit with people who give a shit. So you tell your friends and you tell your family about the problems instead. And it doesn't affect them. They are not emotionally involved and they needn't be, really. REALLY.
But with me, especially, it is all I think about. Let me put it another way. The feeling is akin to people who have children that try to explain to others who do not have children about what its like dealing with child issues. Those without children think "oh shut up and deal with it" and those who have children feel hurt and dejected and then worry about having no common ground with these people. In fact its the same as the trip to Italy story that someone once told me about. It feels like that. But Im not moping to the extent where I want to kill myself. I guess I am sulking because its not fair. And that I feel choked and inflamed and feeling a tad sorry for myself. I think Im allowed to do that. Its what mothers of children do when they can't beat the system.
I know people have strayed away from us because I am like this but let me affirm that I am not neurotic about it. Just that sometimes and only maybe once a month I get really down about it. Its like my guard has been let down and Im sat there, raw and naked to everything and I want to lash out. It actually feels like I could kill. Im sure some of you can identify with that. I wouldn't kill, of course I wouldn't but it feels like I could just rampage the streets of Wigan and shake the shoulders of anyone that will listen to me. But even then that will feel like they are blind and can't hear me and that Im speaking in Swahili to everyone that can. Have you even dreamed like that? I have. It is making me feel anxious just thinking about it. UGH :(
We thought it was going to be one of those hospital visits where the Doctor would examine Ellie and say "No, cant do anything for you again. Notice I say again? Of course you do, you are a very stupid mum who has no idea about anything. But I can see that look of desperation in your eyes and I feed off it. Its such a thrill to see you sat there, weak and wanting in the same breath. Did you even bring a child in here? Oh, surely not, I cannot see her and your imaginary problems with her. Be gone with you, please come back in 9 months as usual. Oh and by the way Mrs Wiseman, Im also a doctor of "making mummies loopy" - please book yourself into the priory at your own expense and tell them its all my fault".
Today saw us enter the room with the head physio, a student physio, a neuroscience assistant, a neuro surgeon, a neuro registrar and a neuro consultant. I thought "Lovely, come to laugh at me cry again - in battalions, yeah?". But the feeling was strangely positive and attentive and I looked at mark and thought "shit". Every ones eyes were on us three and not pointing or whispering like usual. They started out with a couple of question and they brought up the splints thing. Ellie was issued them in October but has never been able to wear them because they hurt. They were issued on the hope they would correct her gait. We hadn't tried hard enough, we thought but because Ellie was always crying when they were on, we didn't pursue it. We thought we were going to get into trouble for that. But this new neuro surgeon looked at her and told us that she would have never of benefited from them anyway because he thinks that she will always walk like the way she walks now. So in one way we felt relieved that we were not going to get into trouble but on the other hand I was inwardly going nuclear thinking "WHAT? She has to walk like this for the rest of her life and you think thats acceptable?" There is however, a glimmer of hope in rectifying the walking style only IF Ellies feet start to hurt and then it would be necessary to operate. So Im glad that she is not hurting with her feet right now and am hoping that she won't have to have an operation but what I can't grasp is that she has to walk like THIS (video link) forever? Please tell me you don't think its acceptable too?
Mark is really cool about it. He always is. He doesn't do emotion and I often think he is callous. He isn't of course but I don't know whether to deck him or love him for how strong he is being. Whether he is doing it for me or not, I cant believe he didn't get out his kalashnikov and blow that damning statement to smithereens. And although the sensible in me was grateful in lots of ways, I'm just finding this hard to accept like everyone else can. Am i wrong to be like this? AM I? Because I love my girl, I adore her. I absolutely cannot function without her but my job is to be the best Mum in the world and I cant be the best if I cant do anything for her. And yet all the while Ellie was taking all this in her stride. I think that's where my job as a mum wins prizes because she was/is not affected by all this. So I soak it all up for her. She is happy being her but I am not happy being me. There, I said it.
So anyway, people ask questions and poke and prod and then they did another examination where Ellie had to touch her toes. And that's when they told us the news. Just like that. Like it was just another little bit of information to chew us up inside. Ellis has onset Scoliosis and Scoliosis in children with MD is horrific. You have to read it to understand it, Im not explaining it because its plain old horrible and painful and ugly and she doesn't deserve to have this on top of everything else. The severity hasn't hit home yet because she is in puberty right now which means she is growing and growing accelerates the curvature - so essentially its not fully developed. But because she has weak muscles, the curvature will magnify and get ugly and painful. What annoyed the hellout of me the most was when the Doctors just let us go out of the room and say come back in October. Im like...... erm, explain, support, what can we do, help? We get ushered to out to our next appointment which is Endocrinology - we are almost late for it becuase they were running 1 and a half hours late before seeing us as it was. These two appointments work in harmony in respects of the scoliosis and growth, we learn now. As far as we were expecting yesterday, these were two separate consultations. One about muscles and one about hormones and growth. At least we can find out more in that office as we were armed with new info.
That appointment was more structured and informative and helpful. They suggest having her bone age assessed. This is because she is so small for a 13 year old and with the hospital being puzzled by her growth pattern, they need to xray her wrists. The wrist is the best place to ascertain bone age. Once this has been assessed they will then configure a sensible course of action............
I KNOW.... months away. Shit, thats 4 months of curvature going on there in her spine.
But anyway there are options for her. She could either have Oestrogen to help strengthen her bones to cope with the curve OR they could give her growth hormones which will depend on the bone age results other wise the growth hormones will speed up the curve and cripple her. The worse case scenario is a brace or the extreme scenario is surgery to insert rods in her spine. AlI can say with them catching it early is that better NOT happen. But with her having MD this is likely.
As you can imagine I came home and researched and researched. Someone mentioned Callanetics and Pilate's which id love to study more of but with Ellie having weak muscles, Im not sure. I have two wonderful and helpful if not majorly supportive friends (Rosie and Sally) who have given me a focus and advice; I'll take that on board from the pair of you - thank you :) But all Im going to do is try and stop crying and hurting and feeling like the big pile of "avoidance" from everyone. After all Ellie is just happy in her own little world even though she doesn't have any idea of the full impact. I mean do you get down and dirty and tell her like it is and scare the crap out of her or do you take baby steps and mollycoddle her through it. Those kind of handbooks you don't get in the shops, do you?
You know, you can ask me to do anything. ANYTHING. I'll talk to anyone about anything. I will deal with confrontation, I will deal with bullying, I will tolerate sergeant majors and such ranks screaming at me, I deal with good and bad but ask me to do that to my own child....erm, NO!
Glad I got this all out, feel much better. Cos as you know a problem shared is a problem halved. Moving on now, lots to learn and little girl to hug.