Retard spaz.

I've been wanting to post something like this for a while, but have struggled with wording it in a way that doesn't sound either whingey or aggressive. Please note that aggression or moaning is most definitely not the intention of this post, it is simply to make people think before they speak. I would also like to point out that this isn't directed at anybody in particular, it is much more a generational thing. So here goes...

The other week I was out shopping when I overheard a conversation between a young woman and her male friend. One of them said something silly, to which the other retorted "you retard!", followed by laughter on both parts. Since then I have repeatedly noticed people, jokingly in most cases, referring to others as a "spaz" or a " retard". Of course to a large number of people this wouldn't seem offensive at all (even in this day and age!). It is said as a form of mild teasing, without much thought. I try not to be offended. But I am. I am offended because it is used as a form of teasing. It's a negative word which is derogatory towards people such as my daughter. In my opinion, calling somebody a spaz is on a par with calling somebody a n*gger (another word I absolutely detest.). These words are old and outdated and have no place in modern day society. My daughter has spasticity in her muscles,  and will most likely have an intellectual disability (formally referred to as mental retardation). This is who she is, these medical terms are part of her life story. It doesn't make her less of a person. Yes she will have struggles, but she still has all the parts of the human body that makes us human. She is the same as the rest of us. So why should these words that define her condition be used as an insult? That is as absurd as me using "you abled bodied person" or "you intellectually average guy" as an insult. Silly really, isn't it? Please guys, just think about what you're saying before it comes out. I know people don't say it spitefully, but it doesn't make it any nicer or easier for those with disabilities, or those caring for people with disabilities.

Anna had her grommets fitted and her sedated hearing test on the 19th September. As usual, she bounced straight back and was her usual happy self almost right away! We don't have the results yet, but when we do I will post again. This morning we've been to see a genetic councillor to start ruling out any genetic conditions. Anna (and I!) are both really enjoying special needs baby group, which we started a few weeks ago. Anna seems to be coming on, her head control is improving, albeit slightly but any progress is worth recognising! She is also trying to grab at things more and more. And she still loves and dotes on her big brother!

An update.

Yesterday we found out Anna has a sort of form of epilepsy. Her vacant episodes are in fact seizures, as we expected. According to the EEG, they last for around 30 seconds at a time. As the paediatrician  only received the report during our appointment yesterday morning, anti convulsion medication wasn't prescribed, however I am expecting a phone call this morning with details of the prescription she will be put on to control this. As she gets older, the dosage will be increased in order to  minimise the severity of her seizures. I've been watching Anna like a hawk, for some reason since getting this diagnosis I'm expecting her to start having full blown seizures. Apparently her choking episodes may also be attributed to this. 

The good news is Anna doesn't have a metabolic condition. We are relieved to hear this,. The test on her newborn heel prick shows that's CMV was present at birth, so we're now 99% sure that this is the cause of her brain damage. What I'm struggling to understand is why CMV isn't routinely tested for in newborns. If this had been picked up earlier, I wouldn't have had to go through the struggle of getting somebody to listen to me and take me seriously when I suspected something was wrong to begin with. Anna would have had a diagnosis sooner, and measures could have been put in place to ensure Anna was getting the support she required right from the get go. However as this isn't the case, I have to try and let it go and concentrate on the fantastic support we've received since diagnosis. 

Anna is still happy as ever. Like any baby her age, she has started teething. Her lumpy bumpy gums are causing her some discomfort, but after a quick cuddle she's back to her usual smiley self. She's laughing more and more, usually at Leo comically hitting himself for her entertainment, my kids are nuts! I wish I could say the same for myself. I am not coping well. I'm exhausted. I'm not sleeping well at all. I'm waking at several intervals through the night to check that she's still breathing, not choking, hasn't had a seizure. Why is it that all the evil thoughts like to creep into your head when it is time for rest?  I know I've got an amazing support network around me, but I feel so lonely. It's so hard seeing people babies develop normally (not that I'd ever wish this on any parent!) and knowing my baby will probably never do these things. And I feel so selfish for feeling like this. I should just be grateful that she's here and happy. She's happy, and it's her that's going through it all! I have no place moaning about how tough I've got it when Anna has a lifetime of difficulty and prejudice facing her.  I know there's nothing I could have done to stop this, but I still feel partly responsible. My one job was to grow her safely, protect her, nourish her with goodness until she was ready to enter this world, and I didn't do it. I know logically that it's not my fault, but it's hard not to play the blame game when you're faced with such unexplainable situations. 

I feel terrible for Leo too. He doesn't understand the severity of the situation. And to top it off, Anna has an operation on her ears on his birthday. It's the only date they have available. He feels left out as it is, so for the dates to collide in the way they have is awful. I just hope as he gets older he realises we don't love him any less, he is just as loved and cherished as Anna is. All I can do is try and make it up to him by throwing him the best birthday party possible. 

Its a girl!

On this day last year, we discovered we were expecting a little girl. I cried tears of joy when we found out. I couldn't believe how lucky we were to have one of each. After the absolute shambles that was our anomaly scan we booked a private scan, I was so thankful to have a decent photograph of our baby to share with people. And the bonus was she was a girl! I wanted a little girl so desperately, a little lady to buy pretty dresses for and play dolls with (yes, I am one of THOSE mums!). I imagined a bossy little madam charging around the house, making us play mummys and daddys, making up dance routines, writing and performing terrible songs that we'd think were fantastic regardless. I imagined her teenage years, the endless arguments we'd have over the amount of make up she deemed necessary, whether high heeled school shoes were suitable or not. I laughed as I remembered my teenage years and thought "great stuff, I have all that to come!". I imagined her blossoming into a young woman, helping her with her university application, shopping trips, relationship advice, weddings, babies. I vowed that my daughter and I would have a relationship very much like the one I have with my mum. My mum is my best friend, she knows absolutely everything there is to know about me, I do not know what I would do without her. I prayed that Anna would feel that way about me. I am slowly coming to terms with the fact that in all likeliness, these things won't happen. It breaks my heart that my little girl won't grow up to do the things she was supposed to do. We'll rewrite our future of course, only time will tell how much she will be able to do. And it will still be filled with happiness and love. Just in a different way to how we imagined. And as my mum so beautifully put it, she'll be our very own little Peter Pan, the girl who doesn't grow up. 

Anna had her sweat test for cystic fibrosis 2 weeks ago. We've heard nothing yet, I'm hoping no news means good news. Yesterday we received copies of the referral letters to the ophthalmologist and the neurologist. On one of these letters, we have the correct term for her brain malformation - polymicrogyria. In addition to this, there are cysts present. We have the appointment with the neurologist in just over a week, so hopefully we'll learn a little more then. Physiotherapy seems to be going okay, Anna's upper body strength does seem to be improving slightly. I've had to rearrange the audiology review due to personal circumstances, but she appears to be hearing more these days too. Its a busy week again this week appointment wise. I probably won't post again until after we've seen the neurologist. I just wanted to say thank you all again for all of the support and love thats been sent our way, its times like these you realised how lovely people are. 

Welcome to Holland

This poem was shared with me by my mums cousin. It sums it up so brilliantly, so beautifully put. I just had to share it with you all.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Cytomegalovirus

Until Tuesday, I had never heard of cytomegalovirus, or CMV as it is often shortened to. After talking to the paediatrician, I decided to look this virus up, and familiarise myself with it as much as I possibly could. I was astounded. CMV is the leading cause of disabilities in newborn infants. More babies are effected each year by CMV than downs syndrome, toxoplasmosis, listeriosis, spina bifida or cystic fibrosis. In fact, according to CMV Action 1 in 1000 newborns will be permanently damaged by CMV. Yet it had not been mentioned to me even once throughout either of my pregnancies. Even more shocking is that upon mentioning it to one of the health visitors, she had no idea about it either. That to me speaks volumes. People need to be aware of CMV. Which is why this entry is so important. If you do anything today, read this entry and share what you learn with as many people as will listen. If even one person reads this and learns something, my blog will have served its purpose.

CMV is a very common virus that is part of the herpes family of viruses. Most people will catch this virus at some point in their life. Chances are you've already had it and were completely oblivious. Most people will not have any symptoms. Others will experience cold or flu like symptoms. In most cases, it does not present a danger. You have it and then it clears up and you're none the wiser. Unless you're pregnant. If you catch this virus for the first time between 12 and 24 weeks pregnant, there is a 1 in 3 chance that it will cross the placenta and infect your unborn child with devastating consequences. CMV is particularly rife in children aged 6 and under. It is most commonly transmitted through bodily fluids. Therefore, pregnant women in close contact with children aged 6 and under are advised to avoid sharing cutlery, drink, dummies and food with them. They are also advised to avoid kissing children on the lips or cheek, instead kissing them on the forehead or giving them lots of cuddles. Of course adults can be infected too, so obvious hygiene measures come into play such as thoroughly washing your hands with hot soapy water after coming into contact with any bodily fluids. Condoms are also advised when partaking in sexual intercourse post conception.

There is no vaccine against CMV at present. People who have already contracted the virus will have antibodies present, but this does not necessarily mean that you are safe against it. As with most illnesses there are different strains. The only way to avoid contraction is by following the measures mentioned above. However, a simple blood test will be able to tell whether you have immunity to certain strains of CMV, and therefore how likely you are to contract it at some point in the future. Antiviral treatment is available to newborns in severe and obvious cases. But once the damage is done, it is done. No amount of antiviral drug will be able to reconstruct the organs effected. Obviously, this will lead to the child proceeding with conditions caused by the virus, in Anna's case, brain damage causing cerebral palsy. You can read more about CMV at the following web addresses:

http://cmvaction.org.uk/
http://www.nhs.uk/conditions/cytomegalovirus/pages/introduction.aspx
http://www.patient.co.uk/doctor/cytomegalovirus
http://en.wikipedia.org/wiki/Cytomegalovirus

Although we're still not 100% sure whether it is CMV that has caused Anna's brain damage, her blood tests indicate that she has been exposed to this at some point, most likely in pregnancy.

I have decided that I will not be posting daily from here. Instead I will post as and when things happen, when I feel like there is something I should let people know and when I feel like I need to get things off my chest. Thank you everybody for your support so far, we're overwhelmed with the amount of well wishes and kind words we've received. It is fantastic to know we're surrounded by such lovely people! Love to you all x

Feelings

Feelings are a funny thing. I ummed and ahhh'd about whether to post this entry. But I have to. One of the main reasons I started this blog was to keep a tab on my feelings, so to not write about this would be  a little hypocritical.

I'm ashamed to admit that the first thing I did after receiving Tuesdays phone call was return to the only coping mechanism I've ever used in times of despair - cigarettes. As soon as I put down the receiver, something inside me just started yearning for a nicotine hit. Rather than fighting it as I should have done, I caved. I don't ever want to be a smoker again. I am more than disappointed in myself for being so weak. I will not rely on cigarettes to get me through this in the long term. But until I have come to terms with it, I will not beat myself up too much. Anything to get me through these first few rocky weeks.

Last night I cried. I cried until I was sick. I cannot remember the last time I cried so hard, I doubt I ever have. It all started when a post appeared on my Facebook newsfeed about a little girl who has been battling cancer. She had stopped breathing and had been rushed into hospital. Her mother had been keeping everybody updated, and had posted one line in particular that struck a chord with me. She said "I then realised, once again, that I cannot actually loose Claudia, not now, not ever.". And it got me thinking. What if Anna dies? I'm not going to pretend this hasn't crossed my mind before, it has many a time. How will I live my life without Anna in it? And then I started thinking a little bit more. What happens when we die? Who will look after Anna? I would never expect Leo to surrender his life to care for his sister, that wouldn't be fair on him. She would have to go into care. And then I thought a little more. She's probably going to have to into care at some point anyway. I won't be able to single handedly care for her when I'm older, or when her needs become more complex. Of course I could be jumping the gun a little, but it may happen. After this my mind turned to our financial situation. At present, I earn enough to cover our rent and perhaps do a couple of food shops. The rest is paid by Sam. We're not going to have this income anymore. And I panicked. Once again I reached for a cigarette. But we didn't have any. And that was what pushed me over. Ridiculous! 

People keep telling me how brave I am. But really, I'm not brave at all. I'm scared. I'm scared about what what the future holds for us all. I'm sad my baby will never live the life she should be living. I have no choice but to except what is happening and make the best of an awful situation. But I'm trying to stay as positive as I can. I have no choice but to. Wallowing in self pity will not get us anywhere. I need to be strong for my children, for Sam, for my family and for myself. I refuse to let this ruin our lives. 

An almost diagnosis

As Anna is settled and Leo has decided 6pm is the perfect time for a nap (God help us later!), I thought this would be the perfect opportunity to update you all.

This morning my aunt, Sam and I arrived at Birmingham Children's Hospital at 11am in preparation for our consultation with Anna's paediatrician. As Anna's weight and length was measured yesterday, the pre admission nurses didn't really have much to do with her today, so we were sent through to the doctors waiting area. We were called in at around 12pm. Our paediatrician gave Anna a check up, testing her muscle strength in her limbs, listening to her chest and checking her level of head support. We explained the areas we thought she was making progress, however minor it may be. The paediatrician listened and agreed, but also thought she was going backwards in some areas too. She asked us if she often crosses her legs at the ankles, which she does. I have noticed this since the beginning. It is this in particular that has crossed my mind time and time again. From this question, I knew what was coming, so I mentioned it first. "This is why I have thought cerebral palsy is a possibility.". We all sat back down when the paediatrician began explaining to us what had been discovered.

"You mention cerebral palsy. There is a very high possibility that this is what we're looking at" and we progressed to look at Anna's MRI images. They clearly showed that she had more fluid than normal around the back of her brain, and the folds of the brain were much smoother than normal. I asked on a level of mild to severe, what are we looking at, are we on the more severe side of the spectrum? I already know the answer before she tells us. "Possibly" she says. And surprisingly, I'm okay with that. I suppose because it is what I've been expecting all along. One of Anna's blood tests show that she has been exposed to cytomegalovirus at some point, but in order for them to determine that this is the cause of her brain damage whilst in utero they need to go back and retest her newborn heel prick sample. So we sign the consent form to allow for this. The neurological disorder is mentioned again, along with the possibility of a metabolic disorder. Anna has had two more blood tests today to check for signs of these, and we are going back to see a neurologist at some point in the near future to discuss the possibility of these illnesses. However, in not so many words, I think we already have the answer. If CMV shows up in Anna's first blood sample, we will know for certain that this is what has caused our beautiful baby's disability.

We still do not have a confirmed diagnosis. The answers we need are just out of reach, but we have a better understanding of what to expect. Today I haven't cried. In fact I am happy. I am more than happy, I am over the moon that we are finally getting somewhere! I will not be returning to work. I am trying to get hold of my employer to arrange a meeting where I can explain our situation. At first I was a little upset about this, those of you that know me well know that I have just completed an access course in nursing and health and biological science. My plan was to continue to university at some point in the not too distant future. I had finally found a job I enjoyed and that I actually felt good at. But now I feel blessed. I still get to be a nurse, except it will be on a one to one basis with the most perfect little patient in the world! And who knows, she could surprise us yet! Whatever happens happens, we cannot change her brain, it is the way it is forever, but I love Anna's brain as much as I love the rest of her. Yes it will be difficult, yes there will be days where I feel like packing it all in and giving up, but I genuinely think that this little girl will be the making of not only me, but our whole family.