A Picture tells a thousand words.

I want to show you a photograph. It was taken in 2005, before everyone had digital cameras, and was actually taken using a Polaroid camera.

I must apologise for the state of the copy, but I took it under artificial light.

This is a photograph of me, taking my two girls for a walk. In fact, this is the photograph of me, taking my two girls out for a walk for the very first time on my own. Up until this point, Tabitha hadn't been well enough to leave the hospital, even for a short time. You can note the date. Tabitha in this picture was 3.5 months old. 3 and a half months, and she'd never been out of the hospital. I remember that for the first time since she'd been born, on this day, I finally got to be just a Mum. I got to take her out, in a buggy and walk around the area with in the fresh air on my own, without nurses and Doctors watching my every move. It was a tough time. While we were stuck in that hospital, I got to see seriously premature babies grow, develop and go home, I saw a baby come in with life threatening non-accidental injuries, and I saw newborn babies admitted going through withdrawal. The one thing I remember hurting the most about my time in this unit, was that I felt it was so unfair. My baby was born at term, I had looked after myself throughout pregnancy with not even so much as a glass of wine, and I had done nothing to hurt her, and yet I was the one whose baby wouldn't get well, and couldn't come home.

I keep this photo on my fridge to remind me of the happiness I felt on that day (which incidentally was planned in advance, nothing spontaneous in that place) when I finally got to escape for a while, finally with my girls. But it also reminds me how hard and unfair it all was, and how there were times I really didn't think she'd ever come home. So many memories. All from one photograph.

What having a SN child has taught me

Over the last few days, I've done some thinking, which is quite frankly, usually tricky for me. I often end up places that are not really very helpful in my head, so it's best not to go there, but the last few days, I've really been thinking about what having Tabitha for a daughter has taught me.

I have learned that I can cope. When she's been screaming at me for days, I can take myself away for 10 minutes, and come back and cope. When she's been up all night being sick (which she was last Wednesday night, urgh) I can cope. When she vomits in the middle of the supermarket, I can deal with it, cope and get my shopping done. When people stare at her because she looks different, I can cope. Sometimes I ask them if there is anything they'd like to know, sometimes I just ignore them, but that's two coping strategies I have for that scenario. When she starts shouting in public, I've got used to ignoring both her, and everyone else, and in that way, I cope. When the 'professionals' tell me to use methods or medications that I know won't work, I can cope...mostly. The odd one will still catch me on a bad day.

Knowing that I can cope is pretty huge I think. If someone had asked me when I was expecting her if I could cope with having a child with a rare chromosome disorder, the answer would have been a categorical no. It turns out, that answer would have been wrong. I am one of lifes worriers, and the future still terrifies me. What will happen as she matures, what will happen to her abilities, will she need further surgery later (very probably), will she always be mobile as she is now, or will she lose that? But knowing what we've survived so far, and what we have coped with, I'm beginning to feel that whatever happens, we'll be ok. We'll cope.

Small Steps

Today, Tabitha waved goodbye at someone. That's not really news, she's been waving goodbye for a couple of years now, but today was different. Today, she waved goodbye to someone as we were leaving a playground, WITHOUT BEING TOLD TO!!!!!!! For the first time ever, she spontaneously waved goodbye. Everytime she has done it before, she has been told to. "Can you say bye bye, Tabitha?" and she will wave, but she's never just done it without prompting before.

It's such a small thing. Tiny. But huge at the same time.

Birthday Friend

I am just off out to a little girl's birthday party, but thought I'd post the card I made her. Her favourite colour is purple, so I used some SU! retired card and inks, and made this card.

I also used my new Just Perfect alphabet, just because when I make cards for children, I like to add their names. What do you think?

End Of Term

Now it's the end of term, that makes it a busy time of year for a crafty mummy like me. Tabitha has a lot of people who help her each day at school, and I wanted to thank them all for what they have done for her. I made cards up using some SU! products and some other patterned papers I bought a while ago and recently rediscovered. Here they are.

I also made some coordinating bottle labels for everyone, and put them over bottles of wine, and in one case, a large bottle of vodka for one special person.

Then I remembered the buddies that Tabitha has had this year. These are year 4 students at her school who help the Reception children learn the routine of the school and keep an eye on them. So I made them these.

Little pillow boxes that I stuffed with mini choclate eggs. I also made them some cards which coordinate, but I had to leave before I could photograph them. Sorry! Note to self: Be more organised next year.

What does it mean?

I've become aware recently that Tabitha is wanting to walk less and less. She is demanding to be carried more, and is taking longer to get anywhere. I've also noticed a deterioration in her gait, she has more of a pronounced limp. I don't know what is causing this, whether its the leg length discrepancy increasing, or if her exostoses are beginning to impact on her mobility, or if she is in pain.

Once again, I wish she could talk....

I had a dream...

...last night. I dreamt that just from nowhere, Tabitha started talking. I think she said "I'm tired Mummy and I want to go home". She had no idea what those words meant to me, but I grabbed her and hugged her, and told her if that was what she wanted, we'd go (I have no idea where we were!). I woke up with a smile on my face. Then I realised that it wasn't real, and it hadn't happened.

I don't know if my little girl can or will ever speak, but this dream showed me how desperately I want her to. Life is so much harder without communication, it's a fundamental part of being human. I know there are aids available out there, but what about a child who just doesn't get language? And when do you decide that they just won't ever be able to speak and communicate? Tabitha does try, but she can't get it right. No matter how much she tries to say "mama", it comes out "bub bub". And she's 6 and a half. Time marches on, but in so many ways, she just doesn't, she stays static.

Anyone out there got a handy and reliable crystal ball?

Bath time

I have to explain something here. Bath time in our house has been a nightmare for a very long time. Tabitha's history is that she was in hospital for a year after she was born, where she was obviously frequently washed, but rarely bathed. Then she came home, and spent the next 6 months popping in and out of hospital with chest infections, so baths were sporadic to say the least. Then, she had her hip operation, and was in plaster from the chest down for 4 months, so no baths then. Finally, when she was around 22 months old, we could actually bath her regularly. And she hated it.

Every bath was a battle. She hated the feel of the water, the way it ran over her, having her hair washed was the ultimate insult, and we couldn't brush her teeth without her vomiting until she was 3 and a half. Gradually, over time, she has learned to 'tolerate' baths, putting up with the washing, the toothbrushing and the dreaded hair wash, but they have been rapid affairs, very much get her in, clean and out again as soon as possible to try and minimise the screaming.

Tonight, for the first time, we had a breakthrough. Tabitha asked for some toys to be put in the bath. I put them in. Then I put her in. Then I showed her how to play with the toys, and she did it!! She didn't scream once, she kept asking for more toys, and playing with them when I put them in the water and all in all, she was in the bath for 35minutes, the longest bath she's ever had. Ellie got in with her, washed herself, washed her hair and got out again, and Tabitha was still playing!!

It was such a bit event, I took a few photos. Here is my little girl playing with toys in the bath and actually having fun for the first time ever.

Lots of little steps finally making one big one.

Who I was

I am a mother. I am the mother of a special needs child. I am Mum to Ellie, the beautiful, wonderful daughter that any mother would be proud of, and I am Mum to Tabitha, the little girl with the infectious giggle, whose daily progress is slow, but visible. But these days, that is who I am. I am Mum. Its a question I get asked a lot, one of the first things Doctors ask when they meet me for the the first time, "Are you Mum?", yes thats me.

But it wasn't always like this. I used to be a whole heap of people. I used to be a sister, a daughter, a student, a research scientist, a wife. Last night, I looked up on PubMed who I was, and I found these.


1. Internalization of gonadotropin-releasing hormone receptors (GnRHRs): does arrestin binding to the C-terminal tail target GnRHRs for dynamin-dependent internalization?

Hislop JN, Caunt CJ, Sedgley KR, Kelly E, Mundell S, Green LD, McArdle CA.

J Mol Endocrinol. 2005 Aug;35(1):177-89.

PMID: 16087731 [PubMed - indexed for MEDLINE] Free Article


2. Signaling and antiproliferative effects of type I and II gonadotropin-releasing hormone receptors in breast cancer cells.

Finch AR, Green L, Hislop JN, Kelly E, McArdle CA.

J Clin Endocrinol Metab. 2004 Apr;89(4):1823-32.

PMID: 15070951 [PubMed - indexed for MEDLINE] Free Article


3. Regulation of gonadotropin-releasing hormone receptors by protein kinase C: inside out signalling and evidence for multiple active conformations.

Caunt CJ, Hislop JN, Kelly E, Matharu AL, Green LD, Sedgley KR, Finch AR, McArdle CA.

Endocrinology. 2004 Aug;145(8):3594-602. Epub 2004 Apr 1.

PMID: 15059960 [PubMed - indexed for MEDLINE] Free Article


4. The gonadotrophin-releasing hormone receptor: signalling, cycling and desensitisation.

McArdle CA, Franklin J, Green L, Hislop JN.

Arch Physiol Biochem. 2002 Apr;110(1-2):113-22. Review.

PMID: 11935408 [PubMed - indexed for MEDLINE]


5. Signalling, cycling and desensitisation of gonadotrophin-releasing hormone receptors.

McArdle CA, Franklin J, Green L, Hislop JN.

J Endocrinol. 2002 Apr;173(1):1-11. Review.

PMID: 11927379 [PubMed - indexed for MEDLINE] Free Article


And I remembered who I used to be......

Blogging against disablism day

Are you disabled? If you are, the chances are you've been faced with some kind of disablism at some point. Today is the day to 'name and shame', tell our stories and point out that not everyone is the same.

Certain elements of the media would have us believe that there are disabled people who are worthy of help and assisstance, and those who are not. Do we agree with this? If you restrict assistance to only those who are or have become disabled via no fault of their own, you find yourself in some very sticky situations. You would consider the paraplegic victim of a car crash as only elegible if they hadn't been to blame for the accident. What about if the same patient knew the driver of the vehicle was over the limit, and got in the car anyway? Are they then responsible for their own disability?

If you are elegible for a Blue Badge, how often do you face discrimination for using it? How often are you challenged when you park up, legally, by members of the public who feel they have the right to demand your reasons for possession of your badge? I often feel completely vulnerable when I park in Disabled spots and get out of the car, for I quite obviously have no disabilities. I wonder how many people in the area are looking at me, trying to work out what my 'problem' is. Of course, when I gather my child from her car seat and strap her into her special needs buggy, I can tell those same people have looked away, moved on now they can justify the use of that space. I have a friend suffering from MS, on her good days, she can walk almost without any noticable issue, I don't know how many times she has been challenged. What gives people the right to assume that we are all taking more from society than we are entitled to?

As time passes, I am more and more aware of how much discrimination there is in the world, and how hard those who are disabled have to work to be accepted, and, as a mother, it terrifies me.

Linking people in the Blogsphere

Its not so long ago that being diagnosed with a rare disorder would leave you (or your family) isolated, with no way of contacting others in the same boat. You might meet 'professionals' who would know something, however small, about your condition, but you were unlikely to actually find other people who knew what the day-to-day was like, how you actually felt emotionally, not just physically. For this reason, I am grateful for the advent of the internet. Through email, blogs and online support groups I have found people with children with Tabitha's condition all over the world. Ok, there aren't many of them, but they ARE there, and we are making connections.

One such Mother is Louise, whose son, Ben, is in his late teens. I follow her blog and find her insights both thought provoking and interesting, and incredibly well written. Please take time to read her blog post here. She so eloquently describes her feelings and experiences, and I found it so touching, and this post has made me feel very emotional today.

'In each other's eyes, we are enough'. Never a truer word spoken.

Easter Brings New Skills

I am so proud. Yesterday, Chris tried really hard to get Tabitha to climb up the 2 steps on the slide by herself and slide down, and she just couldn't do it. But today, from nowhere, she climbed up and slid down all by herself! I suppose she did it about 5 times, and then I got this video.

Doesn't she look like a pro? She just acts like she's been doing this for months, not for the first time today. So proud.

Respite day

Every now and then, we get to enjoy a respite day, where Tabitha is looked after by a lovely lady, who takes her out and does fun things with her, and we get to spend time with just Ellie. We had such a day on Tuesday, and we decided to use the time to take the dog on a very long walk around a local nature reserve. Here are some photos I took.

In the reserve, there are a group of ponies. Ellie loves to spend time with them. She sees all wild horses and ponies as a challenge, and she has to do all she can to gain their trust and respect. Her persistance has led to them now allowing her to touch them.

My little girl using stepping stones to walk down the stream.

Posing in the trees.

Sitting on a tree.

It was a lovely walk, and a lovely time free from the burden of special needs, buggies, and humming (Tabitha's current, very annoying, trait). A carefree time for all of us, and we loved it.

Rant time

Dear Coalition Government,

I want to explain something to you. My child is disabled. Very disabled. And she gets sick. A lot. The result of this is that despite everyone telling me I should be working, I can't. We are a single income family. I didn't ask for this, or want this. I didn't work for 4 years to complete an honours degree, and work in research for 10 years afterwards, thinking 'Oh well, when I've had enough, I'll give up working and make my husband support all of us'. My husband and I had a partnership that was 2-way financially until the birth of our little girl.

I now find that the financial situation is changing. We may find out benefits cut, our allowances decreased. Can I point a few things out to you please? We live within easy walking distance of a local school, but it isn't suitable for our daughter to attend. The LEA agree it's not suitable. We looked around, and found one that was, and she is progressing wonderfully there. But it's 7 miles from home, meaning I have to complete a 14 mile round trip twice a day to ensure she gets a good education. You are taking massive amounts of money from me in tax on fuel just so my child can get the education she deserves. This is of course without counting the numerous hospital appointments that we are required to attend, all over 22 miles from our home.

My child has needed supplementary oxygen provided via an electrically powered machine for the last 5 years. The power that this machine uses carries a VAT charge. More taxes paid to you as a direct result of her disability.

Don't get me wrong, we are not on the breadline, we are getting by. We have a reasonable standard of living, although it is precariously teetering at the moment, and dependant on the interest rate staying low so that our mortgage doesn't shoot up. If it does, we may have to leave the house we have, which is currently suitable for our family, and meets all our daughter's needs, to move to a cheaper house, which may need adaptations to enable her to live there.

We have financial concerns, not the least of which is the future. We have been able to make no provision for the future since our daughter was born, due to the financial pressure we are under day to day. Our child will probably never become independant from us and will always require a high level of care, how will we provide that when we have no ability to prepare in advance?

Mr Cameron, you were the father of a severely disabled child. You know the emotional and practical struggles that come with parenting a disabled child, and yet your current policies are set to add further financial strain to families such as ours. Is there any wonder so many parents of disabled children divorce?

Instead of punishing the vulnerable, remember that they need support. Also remember that a society is judged by how it cares for it's weakest members.

Lisa

Feeling Blue

I don't know why but today, it would seem, is a blue day. I have a few concerns that are playing on my mind, but as things stand, I can't do anything about them at the minute, I just have to bide my time and wait for the outcomes. It doesn't stop me worrying about them though. I think it could be that while the Op was hanging over us, that was the most pressing concern, and now that it over and done with, I'm finding time to get stressed about other things.

Tabitha did react as expected to the GA, and last week up until Saturday was dominated by vomiting. Sunday she got better though. We had another breath holding episode on Sunday though, where she went blue and passed out again. It's been a while since she did that, and actually, it was pretty upsetting to see. She used to do it several times a day, and I was very blase about it, but with it being a while since we've dealt with that, it was actually scary to see. Also, hubby was dealing with her, and so I got to watch for once. I didn't realise how scary it looked when she lost consciousness.

Parenthood. Ain't it just great?

Op time

Tabitha had her operation yesterday. She weathered the storm quite well considering she usually struggles with vomiting afterwards. Some of the poorly children on the ward were really quite rough after their surgeries, but take a look at these pictures.

The first picture was Tabitha 20 minutes before surgery, the second, 20 minutes after she got back to the ward. You almost wouldn't have known they'd done anything at all! Very proud of my special girl.

Surgery

Tomorrow, Tabitha is back in hospital, though hopefully only as a day patient, for ENT surgery. She is having grommets fitted for the 4th time. This will be her 21st general anaesthetic, hard to believe for a little girl just over 6, especially when she hasn't had one for about 18 months or so. I couldn't have imagined on the day she was born, that 6 years down the line, I would be blogging about her 21st surgery. Surgery days are tough, but it's been a while, and they don't come anywhere near as often as they did. Experience tells me tomorrow won't be easy, but if I keep my head down, and plod through, Tuesday will come, and it will be better.

New Blog

I have a new Stampin' Up! blog which I'd love to share with you. It is here, and if you like my things, I'd love it if you would become a follower.

Family times

When I nipped to the Post Office yesterday, I asked them if they would be interested in stocking some handmade cards. They said they would! So I am now trying to find inspiration to make up some samples to take up there to see if they will sell.

Here is my first effort.

It's in Sahara Sand, Daffodil Delight and Regal Rose, with the Confetti background stamp set and the sentiment from So Happy For You SAB set.

Yesterday, we went out for a walk as a family, not always easy as we like to tramp around in fields, and you just can't do that with a special needs buggy in tow. However, yesterday we went to Brean Down Fort, somewhere we haven't all been to together before.

Tabitha found the tiniest of hills, and decided she couldn't walk down it, so she had to scoot on her bottom. Nicely stained trousers were the result!

And here is Ellie and Piper, with Brean Down Fort in the background.

What I've been up to

I must apologise that it has been so long since I updated. Lots of appointments and paperwork (of the boring, not fun kind!), but I have been crafting and here are some of the things I made.

Firstly, a birthday card for my niece. Sorry about the colours, but I took the photo in the evening and the lightbulbs these days are horrible, giving us yellow rather than white light.

I went to Stampin' Up! training in Fareham, with my upline Karen and her uplines upline, Stevie. I made a corner bookmark swap in Rich Razzleberry and Old Olive.

Another childs card for one of Tabitha's friends.

And Team training at Stevie's house required another swap, so I made this thank you card.

While at team training, Stevie likes to set us challenges. Our challenge this time was to make a card using Bashful Blue, Garden Green and Tangerine Tango, a colour combo suggested by the colour coach, but not one that I would chose to put together!! This is what I came up with.

Hope you like some of my things, if you do, leave me a comment so I know!!

Childrens Cards

There seems to be a rush of children in Tabitha's class having birthdays at the minute. Here are the cards I made them. I wanted a design that would work for boys and girls, and ended up with this.

I have used a lot of retired SU! stock here as well as some current. The little girl loves purple, so I had to go for Lovely Lilac, and the boys cards needed a little something, so I added the Soft Suede polka dot ribbon.

My News...

...I am very excited to be able to tell you that I have become a Stampin' Up! Demonstrator. I have been crafting for a few years now, playing with product ranges and styles of crafting. It wasn't until I discovered the products of Stampin' Up! that I finally felt happy with what I was producing, and I am so happy now I am able to pass that on to other people

I have a new official email address lisa.seriousstamper@gmail.com which is for business use, and a new blog, although I haven't got it sorted yet, so watch this space for when I get it all up and running. In the meantime, if you would like to book a party, please email me and ask!

And here is the first card I have made from the starter kit I received.

It's so simple and yet so effective. If you want to know how to do it, book a party and I can show you!!!

Thought for the day

I have some exciting news that I will be sharing soon, but in the mean time I was musing today about things in general. I often surf the blogsphere, and find many, many other blogs written by people who are living lives outside of the norm. Those whose lives took an unexpected turn. I find them so interesting, there are those who embraced the change and those who fought it. Those who are grateful for it, and those who struggle with the reality, and today I feel it's right to tell you which side of the fence I come down on.

My daughter is beautiful. She is loving, she is gorgeous. She is affectionate, stubborn and willful, and has funny little ways that keep all of us entertained and challenged regularly. There are people out there, who face difficulties like ours, and welcome them, who wouldn't be without them. I have to say I am not one of those people. My daughter is fantastic, and I wouldn't be without her, but would I chose to have her exactly the same as she is if I could change things? No, I wouldn't. How could I say I would chose to have a child who would require 20 surgeries before she was 4. How could I say I would chose a child with a disorder as distressing as cyclic vomiting, rather than having a healthy child? How could I chose to have a child who faces daily pain in the future, with a substantial risk of loss of mobility, rather than a child who will grow, and run and play with their peers normally?

My daughter is unique and wonderful, and I reiterate, I wouldn't be without her. But if I had the option to have Tabitha exactly as she is, or healthy, I have to say, I would go healthy every time.

Christmas Cards

The design I decided on for this years Christmas cards is below. I LOVE LOVE LOVE the rich razzleberry colour from Stampin' Up! and decided to use that as my christmas colour this year. I saw a technique video on You Tube, which showed how to do a split negative image, and thought that would go perfectly with the the Scandanavian Season stamp set that I had from the 2009-2010 catalogue.

I was so pleased with this design. I can only hope that the people who received my cards this year liked them too.