9 months exactly

Wow! 9 months ago this time, we were at Birmingham Children's hospital. MJ was in A & E and fighting for her life. They were struggling to get tubes down her throat. So many people working on her little body and all I could do was watch. So many syringes filled with fluid being pumped into her. Her clothes cut off.

9 months later and MJ is much stronger. She's attending school from 11am to 3pm everyday and in September she's going full time.

She still falls over often, sometimes because she's tired and sometimes it's because she might trip. I've tried to explain to Mic that I need to know when this happens, not to prevent her from having her life, but to find out why she falls and help her live a full life, but others might need to help her more. She's so afraid that I won't let her out. If only she she knew that every time she steps out the door I'm petrified and have to stop myself from pulling her back in.

Her walking is not so great these days either. She has to stop often and complains her knee hurts. It worries me. She's so stubborn that sometimes she won't say that she needs a rest and tries to push her body to do more than it's able. I watch her and listen to her laboured breathing and tell her to rest. I think I'll have to start taking the wheelchair our more often for her.

Other than that, she's been reassessed at school to see what level she's at. There are some improvements, and I'm hopeful that MJ will at least get to a level close to her actual age, so the difference won't be too noticeable amongst her peers.

She is really looking forward to the holiday, as are we all. It has been well deserved and will be much appreciated. I know that I'm looking forward to the break, not just for the break itself, but we will spend time together as a family. Only Ash and Sam won't be with. One day, we will all go on holiday together.

Almost 9 months

So, this two year window is racing by very quickly. I'm increasingly worried about MJ's schooling. We've looked at sending MJ to a special school where kids have varying degrees of difficulties. Only problem, the medical and educational staff don't think it's appropriate for MJ as most of the kids that attend have cerebal palsy and they feel MJ will stand out and know that she's different. NEWS FLASH!!!! She already knows she's different in main stream schooling and she does stand out! Having the sticks helps to make that more of a sore point for MJ. I just wish they'd start to listen to what she wants. More than anything, MJ wants to be normal. They don't deal with her daily frustrations and conflict within. MJ remembers how it felt to run, ride her bike, swim, climb trees. Now, she can't walk more than a few yards before she experiences severe pain.

Her frustrations are so bad she cries so hard and then lashes out. She struggles to find the right words to convey how she feels. I know she's frightend to tell the staff and medical professionals what she truely feels as she thinks she will be in trouble.

We only have two years to ensure that MJ get's as much educational support as she possibly can, because of the brain injury. Whatever stage MJ is at after 2 years, that's where she will be for the rest of her life. So imagine this: If MJ only has the reading age and vocabulary of an 8 year old NOW...without the proper support in place..will she still remain at this level for the rest of her life? YES! Can you imagine when she's in the prime of her life...I can't bear to think of it. WHat kind of employment prospects will she have? She won't be able to go shopping which leaves her open to being taken advantage of. She won't be able to rent or buy her own home.

If she get's the support she needs, then her choices are endless. I just wish everyone would remember that the choices they make MJ has to live with....

New developments

MJ is back at school and her schedule has changed. Needless to say I think it is playing havoc with her at the moment and her fatigue levels waiver from day to day. As this was only the first week of the new schedule, I'll see how she is at the end of week two and if she's still so tired then I'll have to talk with the school to see how things can be changed. She is also trying out a new programme in which she listens to classiscal music to help with memory recall and it's supposed to help relax her. I don't believe it's having that effect. She seems quite stressed by it.

MJ has a new splint. This new one allows for more flexibility. It has a hinge just below her ankle, so she is able to walk better.

Took her swimming today to try and work some of those core muscles. It's a little difficult trying to help MJ to trust me in the water and also trying to teach Cort to swim. Dave doesn't like public pools much, and even though he was with us today, he was extremely uncomfortable. Hopefully before our holiday starts, I will have succeeded in teaching both children to swim.

Things are a little harder for us now as Ash works full time 12-8. We now need to employ a carer not only to assist with MJ, but to help out with picking up Cort etc.

Ugh I tell you, things just seem to get more complicated!

There have also been times when MJ won't eat anything. Why that is I don't know, but it is just disconcerting.

On the up side - and there is always an up side - MJ still manages to laugh everyday. She still loves life and tries to get as much as she can from it.

I'd love to take a page from her book and laugh more often instead of worrying all the time.

If the weather holds out tomorrow, we are off to the beach. Time to tan our extremely white bodies!

Sad times

Well, today has been very emotional. Recently my mother in law passed away, quite unexpectedly albeit peacefully. The strain has hit Dave quite hard as he tends not to release his emotions in full view of everyone. Today was the funeral. Mic misses her nana so much and I think that for both her and Ash, the realisation that they will never see their nana again hit home. Thankfully Cortni is too little to fully understand and I never took her to the funeral. I remember going to my grandad's funeral when I was 5 and didn't want the same memory for Cortni.

My children were dignified in their grief and hugged their grandad, dad and uncles and I think they understood and respected the loss that the boys felt and still feel.

As for MJ in general, she's doing okay. Her school time table will alter after Easter and she will get the chance to join her class mates in Art class.

We received the cognitive assessment from the psychologist and basically MJ will need a lot of support and will struggle to keep up with her peers. In a nutshell, MJ will have to do vocational training. What that will be exactly, we are not sure, but MJ has a while yet, before she makes that kind of decision.

It will be MJ's 12th birthday on Tuesday. 7 months after her accident. Today, I kept thinking how 7 months ago things could have been so different and I could have buried my child. I really do not think that we could have coped as individuals or as a family if we had suffered 2 losses in such a short space of time.

When I chat with people about how long it has been, the surprise on their face astounds me. I think that they think it has been so much longer. 7 short months of pain, fear, trepidation, happiness and loss.

I'm hoping and praying with all my heart that the next 7 months will be filled with happiness, laughter and excitement. NO MORE TEARS!!

(p.s. Thanks to all for their kind words and sympathy during our family's time of grieving)

Bubble wrap

If you guys know where I can get a lifetime supply of bubble wrap, let me know. I need it so my kids can stop hurting themselves.

I took Ash to the doctors tonight as she fell down the stairs and was in serious pain. She's fractured her coccyx. Another year, another wrinkle, another grey hair and more broken bones. Why my kids? Is this karma? Jeez...I'm sorry already! Move on already and leavy my kids alone!

I've told my kids that for halloween, they are going as sphere balls!

MJ had a rough time in physio today. The physio tried to explain to MJ that they need her muscle at the back of her leg to lengthen, otherwise she will need surgery later in life. MJ was petrified at hearing this. I tried to explain that later on in life could mean many, many years from now and she shouldn't panic. I think with the tiredness from school and all the stimulation, she was feeling a little emotional.

They are also talking about putting MJ's leg in a cast during the Easter break. I don't think MJ quite understands why, but basically it's just to get the muscle to flex differently. Because MJ is walking and landing with her toes first, the muscle is balling up. Basically, that's not good. I'm sure they'll get it sorted, but it'll take time.

So, with Ash being injured, looking after Mic, who is injured, does this mean I have to get Cort to look after Ash? What a wicked world I live in...lol

Seriously though, I am very worried about Ash. She is a mini me and is stubborn and determined. I know she will push herself to do things that she shouldn't. Problem is, with an injury like this, only time can heal it.

Telly

So, MJ started high school yesterday. I was a nervous wreck. I was also very proud of her achievement. A day we thought might never happen, but it has and I was so excited!!!

MJ is thoroughly enjoying school. It takes a lot out of her though. All the stimulation she has had over the last few days tires her out. As a result her head hurts and she doesn't sleep too well. But, I think by the end of the week, when all her mates are used to her being back at school, and things are calmer, she may fair a lot better.

The kids got told off today by a teacher who happend to be in the Base during break. One of MJ's friends told the teacher that they all had permission from Mrs Telgar to visit MJ. Needless to say that the teacher was not happy so I think visitors will be restricted now. I hope not, but hey, there always has to be one sour lemon.

All I can say is, guys, don't let her put you off. Your visits to MJ are a huge part of her rehabiltation and you are really helping her feel normal again. If she ever takes MJ for a lesson, maybe MJ should pretend to go to sleep like she used to do in the hospital, then the teacher can have something real to moan about...ha ha ha! I really shouldn't be so naughty should I???

So, MJ has been in the paper again and finally on Midlands today. I think the piece was filmed about a month ago, but at least others can look at her website now and maybe, just maybe, we'll get the council kick started to get those crossings in place before Cortni gets to year one. If nothing else, perhaps other parents who are facing a similar situation will take a look at MJ's webiste and have hope and inspiration to not give up.

I was giving Cortni a bath today, and she was feeling a little jealous of MJ being on the telly. She said "I wish I was McAyla and she was me". My heart broke. I told Cort not to think like that as she will do something truely amazing one day and she too will be on the telly. I think I have managed to restore Cortni's confidence and I hope she realises that she is special to me just as much as MJ and Ashley.

I'm shattered! Today, I feel like I have been through every emotion on the planet! In truth, I feel like that most days. Anyway, I guess I should try get some sleep.

School

I'm sorry for not updating regularly, but things get a little hectic sometimes and I find myself running out of hours in the day. This entry is just to give that little more insight into MJ and to thank a range of people for all that they have done.

As far as MJ has come, she still struggles with following conversations, she struggles with attention and her short term memory is still an issue. She still goes through a range of emotions and sometimes overreacts to situations. How much of that is normal teenage girl stuff and how much of it is because of her injury...I don't know. I do know that I'm more protective of her now as would be expected. I still let her go out and hang with her mates, and I try to give her independence, but I'm also very aware that those that don't see MJ everyday don't fully understand what she's going through.

She is not always able to convey what she means in the right way. For example when she says she's special. Sometimes she's joking and sometimes she is being serious. I tell MJ that she is special. She is my daughter and is special to me. She is special because she has survived a very traumatic injury that should have killed her (and almost did). At the very least, it should have left her in a very worse state, but it hasn't and that makes her special. Sometimes, when she does daft things that make us laugh, we tell her she's a bit special, meaning she's daft. This is a family joke.

MJ lacks tact at the moment. What I mean is that she calls a spade a spade. If she's irritated, she'll tell you. She's not pretentious. If your hair is a mess, she'll say it in a way that will probably offend you. She doesn't mean it like that though. Obviously, if you do the same back, it hurts her too. An eye for an eye makes the whole world blind. We are open and upfront within our own home and we say things as we see them. McAyla just has to learn when it's appropriate. Imagine a child having a temper tantrum. Sometimes when we are angry, we'd like nothing more than to cry and scream and stamp our feet. We don't. We learn what is acceptable behaviour. McAyla has to re-learn appropriate behaviour too. Like with all children, it doesn't happen overnight, it will not happen overnight with MJ either.

I guess what I'm trying to say is have a little patience with MJ when you chat with her. Sometimes she's an 11 year old girl who's able to chat about fashion and boys etc and sometimes she's younger MJ trapped in her 11yr old body.

When I chat with her about the accident, sometimes she cries. Sometimes I cry. It's buried very close to the surface. She understands that our lives all changed and she understands how much we all love her and how close she came to dying. She cries when she thinks of the compassion her friends showed when she probably didn't even know who they were. I sometimes see tears in her eyes when she sees people with worse physical/learning difficulties than herself. She looks at her website and cries when she sees all of her photographs and reads the letters from all the people whose lives she has touched. I still cry when I read them.

So, MJ starts school on Monday. It's only for an hour, but at least it's a begining. Another landmark she has reached. I know MJ is a little scared and excited about starting high school. She's worried that her mates won't understand her disability and like any new kid, she's worried she won't fit in.

Needless to say, the thought of her in high school makes me proud, scared senseless, apprehensive and in general I feel like a nervouse wreck!!

She'll be picked up and dropped off by taxi. While it's great that MJ is now starting school, the physio sessions have moved to the afternoons. This is a problem as it's the school run time and Di won't be able to take MJ to physio anymore. I think we may have it covered with my father in law, but my mum in law is also very poorly most days and he is her carer and needs to look after her. It's another hurdle, but we'll get through it. I'm not letting it get me down as I know, one way or another, we'll manage. I just like to have the solution before the problems occur.

During the half term break MJ has tried trampolining again. She really enjoyed it, but hurt her ankle. Other than that, physio is going well, she's still enjoying hydro and this next week she'll be fitted for a new splint as she's quickly outgrowing the current one. She had a session with SLT and MJ was taught how to breathe when she speaks. MJ uses her shoulder to help draw in a deep breath as opposed to using her diaphram. Hence the whispering. We are still waiting for the results of the pshyc assessment.

Can I just add a huge thank you to Di Briggs for taking MJ to physio over the last few months. You have been fantastic and I am forever endebted to you.

Mrs Telgar at Nunnerywood High School for getting things in place so quickly when MJ was discharged from hospital. Also, thank you for understanding about MJ's shoe situation.

Mrs Hemmings for putting my mind at ease as to how and where MJ will start her school intergration.

Sarah Lane for getting the course work and teaching MJ at home.

Lynn Luchesse for understanding our needs as a family and for organising MJ's home schooling, re-intergration to school and the whole co-ordination of the different disciplines around MJ.

Nic B, Kim and Vicki and their families for being there with MJ when she couldn't communicate verbally, for including her in birthday parties, exercising with her and in general just making her feel normal. You have touched my soul with your kindness.

Dave's dad for helping out when we need you on short notice.

Ashley my beautiful grown up daughter things have been tough for you, but you have helped look after your sister and put your life on hold. I love you and I can never thank you enough. Thank you so much for doing all that you do.

Cortni my little baby for wanting to play with your sister, making sure she is safe even at your tender age and for giving MJ just that little bit of a hard time every now and then as sisters should.

Sam my 'adopted' daughter you too have been there for MJ, even before her accident. Thank you for being the shoulder for MJ to lean on when she cannot turn to others.