I once mentioned that I had wanted to share a positive story that might offer hope to others, yet I couldn't because I did not have a scanner. I was also keen to post one particular photo that meant a great deal to me.
Then I received the funds to get that scanner, and Sian at Mummy Tips's Memory Monday Meme got me reminiscing and gave me the push I needed to share part of our story.
It's a story with the happy ending no-one expected and proof that there is always hope. Life never remains bleak forever; things do get better.
To anyone else, this is just a photo of a two year old girl walking. It was taken in August 2005 and we are on holiday in Devon.
In reality this is the photo I never expected to take; this little girl was never expected to walk. This is my daughter IJ and these are her tentative first steps. What is not obvious is that years of physiotherapy were required to help her reach this huge milestone, but she did it. We did it.
IJ arrived in the world curled up in a tiny ball. Despite spending her first two weeks of life in the Special Care Baby Unit after a difficult start, there were no indicators, when I was finally able t0 take her home, of the struggles that would lie ahead for the two of us.
Everything about her seemed perfect. Yet by the time she had reached four months old it was obvious that all was not well. She had always struggled to feed and had started screaming in pain every evening for no apparent reason. I sensed it was more than just colic. Her little body had begun to uncurl itself but her movement still seemed quite limited. Something was not right.
These concerns eventually resulted in a week long hospital admission where IJ was poked, prodded, x-rayed and scanned while I stayed on a camp bed at her side out of my mind with worry.
Then came the devastating news that her feeding problems were symptoms of a far more serious issue. Her muscle tone was weak, her spine was curved, she had little head control and one side of her body was clearly more seriously affected than the other.
The prognosis was grim. She would fulfil her expectations but no-one knew what those expectations would be. It was highly unlikely that she would ever walk or talk. With that news to digest, I then took my baby home, utterly devastated.
I would like to say I then read every medical book relating to IJ's problems, that I went in search of every possible source of help,and sought advice from every professional I knew and weighed up all our available options, but I didn't, not immediately.
I crumbled, I fell apart, I didn't eat and I didn't sleep and I grieved for the perfect child I thought I'd lost, and I ended up as ill as IJ. I was angry with the world. I was a single parent trying to cope alone with a very sick child with a bleak prognosis and an uncertain future and the world seemed a cruel and uncaring place to be.
But then that little girl smiled and reminded me that she was still here, she was still my baby, and so our fight began.
I registered IJ with a Special Needs group run by our local hospital where she was given a team of specialists to oversee her care. I learnt Makaton sign language which proved invaluable in helping her communicate. And every day I did physio with her to help strengthen her weak muscles and straighten her curved spine.
There was never any guarantee that she would walk or talk. For a long time there was very little communication and her progress seemed limited. The medical staff could make no promises preferring to air on the side of caution and avoid offering any false hopes, understandably.
Despite the bleakness of our situation and my endless months of worry and often despair, we kept going, just the two of us and a team of professionals who were doing the best they could.
There was little choice but to face each day; no matter how tough life is, the world keeps turning. With a little girl who was slowly developing her own character, with her cheeky grin and happy disposition despite her challenges, getting off was not an option. I refused to give up on her; I could never do that.
And slowly but surely a few words came around 20 months and her movement improved. IJ never crawled but eventually she was able to pull herself up again the sofa and remain there for a few seconds at a time.
Finally aged two, she took her first shaky steps. It had been a long haul but we did it.
She has continued to go from strength to strength.
Now aged six, she is exactly the same as her peers. She took a little longer to reach her milestones but she got there in the end.
She's my little superhero.
It's a cliche but when life get's tough, keep going, an hour at a time, a day at a time, one step at a time.
That's what we did.
What a great story and how nice to hear one with a happy ending. My little one thinks the pictures are adorable and so do I :)
I can only imagine how tough it was to go through that on your own, but as you say, all you can do is take 1 hour at a time and just keep moving forward. There is no choice.
Posted by: Dawn | February 01, 2010 at 10:22 AM
What a fab story and testimony to the fact that medical professionals don't always know how a child will grow and develop - particularly with parents who are so amazingly determined.
Posted by: Sally Whittle | February 01, 2010 at 10:49 AM
Such an inspiring story! I had no idea you'd had such a struggle. IJ is not the only superhero in the tale xx
Posted by: Dulwich Divorcee | February 01, 2010 at 11:06 AM
I credit it all to your love for her (and of course her iron will!) and I am now off to find a tissue.
Posted by: Pippa | February 01, 2010 at 11:21 AM
Inspiring. And tears. That is all :-)
Thank you for sharing this.
Posted by: Bumbling | February 01, 2010 at 11:24 AM
What a moving story. Well done her and well done you on staying positive
Posted by: Home Office Mum | February 01, 2010 at 11:39 AM
Rosie, that is just beautiful.
If ever anyone needed inspiration or to see that there really is beauty in this world, then this post is it.
I'm actually travelling on the train to London while writing this and it has really cheered me up.
It's not sad at all, I think it's just lovely x
Posted by: Tara@Sticky Fingers | February 01, 2010 at 11:40 AM
So wonderful. Thank you so much for sharing your beautiful little girl's story. You have both done so well in refusing to accept the bleak future the 'experts' tried to paint for you both. Very moving post and I love that triumphant photo at the end! x
Posted by: Vegemitevix | February 01, 2010 at 11:41 AM
Rosie I am so moved by this.
I had no idea you and IJ had been on such a journey.
Puts a lot of things in perspective for me.
Thank you. You are both so strong xx
Posted by: Josie | February 01, 2010 at 11:41 AM
Rosie, that's a great story. I am so happy for both of you. You can be proud of yourself! xx D
Posted by: Metropolitan Mum | February 01, 2010 at 11:42 AM
What a lovley post, it just shows that there is always hope. IJ and yourselves have both travelled a hard path, but she is wonderful and a real credit to you. Thank you for sharing your photo's and story.
Posted by: TheMadHouse | February 01, 2010 at 11:45 AM
What a wonderful story and truly inspirational. So lovely to have a nice ending. Thank you for sharing with us
Posted by: Emma Walton | February 01, 2010 at 11:49 AM
Oh that, that is amazing :) I am so proud of both of you (which is silly as i don't know you) but thank you - thank you for sharing and for being so strong and proving to me that there is a point in hope and sometimes things do all work out in the end...I love that last photo - it is beautiful.
Posted by: april | February 01, 2010 at 11:51 AM
Such a gorgeous final picture in the SuperGirl costume! And isn't she just. What an amazing Mum you are as well...I have a whole new level of respect for you now Rosie.
Karin
Posted by: Karin @ Cafe Bebe | February 01, 2010 at 11:51 AM
Beautiful post, you have me in tears once again. what an incredible journey you two have been on together, and what an incredibly strong and fabulous mother you are.
Posted by: Heather | February 01, 2010 at 11:52 AM
This is such a wonderful story. A friend of mine lost two babies at around 6 months due to muscular problems that eventually took over their entire body. What a warrior you were for her!
Posted by: Zoey @ Good Goog | February 01, 2010 at 11:53 AM
oh My God what a time you have had and what a remarkable and moving story! Just brilliant, big love. xx
Posted by: Linda | February 01, 2010 at 11:58 AM
What an inspiring story. There's no limit on what a mother's devotion and love can accomplish. Your little girl is beautiful!
Posted by: Dr.Leah www.singlemommyhood.com | February 01, 2010 at 12:04 PM
Supergirl, Supermum!
Well done you two, an inspiring message. Thanks for sharing.
Posted by: Stella | February 01, 2010 at 12:07 PM
Absolutely fantastic! And a testiment to what an amazing mum you are, because you never gave up.
Posted by: notSupermum | February 01, 2010 at 12:15 PM
You are both amazing. I had no idea IJ had such a difficult start.
I'm sobbing, but in a good way. Much love to you both x
Posted by: SandyCalico | February 01, 2010 at 12:56 PM
What an amazing story, beautifully told.
Your strength throughout is truly inspirational, and I agree with supermum - the best bit is that you never gave up, no matter how bleak things looked.
And that's one fantastic little girl you've got - but you knew that already :)
Posted by: littledudesmummy | February 01, 2010 at 01:03 PM
wow, wonderful story and look at your beautiful IJ now. Well done for you for getting yourself together and doing practical stuff to help IJ develop. You are an inspirational mummy. Mich x
Posted by: Michelle | February 01, 2010 at 01:21 PM
Rosie, maybe now you'll actually start to believe you are that strong woman I keep talking about. I remember when you moved back up here and we met IJ for the first time and my whirlwind 1 year old Miss M amazed you as IJ had never been like that at that age. Look at her now! IJ is such a determined little girl, just like her Mummy, and while it has taken a little while for her to catch up with her peers in some ways, she is way ahead of them in others, and much of that is also down to you.
Posted by: Jo Beaufoix | February 01, 2010 at 01:30 PM
What a truly amazing post xx
Posted by: YummyNo1 | February 01, 2010 at 01:46 PM
This is what makes blogging so inspirational. What a story! I don't know you but I read your posts and now I know a little more of the struggle you have had. A beautiful little girl you have there.
Posted by: Trish @ Mum's Gone to | February 01, 2010 at 01:54 PM
That's such a beautiful story. Thank you for sharing - and I'm glad it's all worked out so well for your daughter.
Posted by: Rachel Cotterill | February 01, 2010 at 03:20 PM
What an amazing story, Rosie. And that first pic really sums it up. A triumph, a just reward after all the hard work.
Posted by: Tim (aka The Dotterel) | February 01, 2010 at 03:20 PM
No words except - Wow!
Posted by: Expat Mum | February 01, 2010 at 03:48 PM
An incredible story. You and IJ are incredible. *sniffs & runs off for a tissue*
Posted by: Emma @ Notsuchayummymummy | February 01, 2010 at 03:58 PM
Now you have gone and made me cry.
You are a wonderful mum and I am now really really proud to have named my beautiful Blythe after you. xx
Posted by: MummyTip | February 01, 2010 at 05:21 PM
What an amazing and inspirational story. I didn't know you'd been through so much. I'm going to email your post to a friend whose little boy has been in a similar situation since he was born.
Posted by: nappyvalleygirl | February 01, 2010 at 05:34 PM
You must be and should be so proud of her, she's beautiful and has come so far. You should also be giving yourself massive credit for following through and making sure that you got the help she needed. I think you're both wonderful x
Posted by: Liz@VioletPosy | February 01, 2010 at 05:48 PM
wow, wow wow..how you managed on your own, I don't know. I am not sure I could have coped as well, and what am achievement. Your daughter is beautiful.
Posted by: MuddynoSugar | February 01, 2010 at 05:53 PM
Rosie, you are both super heroes.
Posted by: Surprise mum | February 01, 2010 at 06:21 PM
Pass the tissues please, such a beautiful post and I do love a happy ending.
IJ is a very lucky little girl to have such a wonderful determined supportive Mummy and you are just as lucky to have such a Super hero.
What a team you are!
Beki x
Posted by: beki | February 01, 2010 at 07:22 PM
That's so awesome. Fantastic that even after an unsure start, you didn't give up on her, but worked so hard to get where you are today.
A seriously inspiring story for those of us when we feel we've reached the end, especially with results like that :-)
xx
Posted by: jay | February 01, 2010 at 07:22 PM
Wow, Rosie, that's a fantastic story.
It sounds like the grief was an important part of your process, and not just a matter of "falling apart".
It's an incredible story, and I'm so glad you've shared it.
Blogging is amazing, isn't it? You click on someone's post, thinking it's going to be some pretty little story about a new toy, or something learnt at schoool, and ka-bam! this is the kind of thing that's waiting for you.
Posted by: Iota | February 01, 2010 at 07:44 PM
I agree - supergirl & supermum
That's a beautiful story with such a wonderful ending
Posted by: Muddling Along Mummy | February 01, 2010 at 08:16 PM
A very inspiring story, you were obviously both determined and it paid off. She's beautiful.
Posted by: Noble Savage | February 01, 2010 at 08:34 PM
Wow, what a fabulous and uplifting story. You two are both amazing.
Posted by: Barbara | February 01, 2010 at 08:38 PM
Lovely lovely story. I can't even begin to imagine how difficult things were for you. What a beautiful little girl and a Mum who should feel very proud of herself x
Posted by: Carrot in Mums hair | February 01, 2010 at 08:42 PM
What a wonderful story. Thanks for sharing, and big respect for hanging in there in such difficult circumstances.
Posted by: geriatric mummy | February 01, 2010 at 10:02 PM
What a great and encouraging story, I'm sure it will mean a lot to many parents facing a difficult situation. The two of you are amazing!
Posted by: cartside | February 01, 2010 at 10:08 PM
I love stories with happy endings, you must be so thankful for where you are now. What a great mum.
Posted by: Erica | February 02, 2010 at 10:00 AM
Wow... that last picture is so wonderful. How brave you are to have done all that one day at a time... without really knowing the outcome. But doing it anyway. I am THRILLED for you! Came here from Jo... so glad I did.
Posted by: Helen Garnett | February 02, 2010 at 10:01 AM
What a lovely story, and such a strong, beautiful little girl...
Px
Posted by: Paula | February 02, 2010 at 10:14 AM
I've never met you but I sure wish I had. You worked wonders with that beautiful little girl and you are absolutely right, things do get better. However our children turn out, whatever they become, they are our children and we will do anything to assure they live life in the fullest possible way, as has proved for Amy.
Best wishes - and beautiful photographs too.
CJ xx
Posted by: Crystal Jigsaw | February 02, 2010 at 10:41 AM
Very moving story with such an uplifting ending - hope you don't mind if I quote you in my next blog post Lx
Posted by: Family Affairs | February 02, 2010 at 12:00 PM
Wow what an incredible story. You have been through so much and I can only imagine the times of despair you must have experienced. We all like to think we're strong but to cope with that as a single mum is amazing. And so is IJ! Big hugs to you xx
Posted by: ThatGirl39 | February 02, 2010 at 01:20 PM
What a wonderful, wonderful story. And what a wonderful, wonderful girl.
Posted by: Mwa | February 02, 2010 at 09:42 PM
That really is one step at a time, and what a result. What a team you two make; you should run in the next elections.
It sounds as though my mother was born with something similar, and it didn't hold her back either. Four children, interesting career, champion local bellringer (oh, how she'd blush). She doesn't know about blogs, but I'm going to get her to read this one.
Thank you, as ever, for an inspirational post. And do consider running for office!
Posted by: angelsandurchinsblog | February 02, 2010 at 10:00 PM
She is so lucky to have you as a mum.
Posted by: A Modern Mother | February 03, 2010 at 07:34 AM
Well done you for not giving up. You are both an inspiration to us all. x
Posted by: Chic Mama | February 03, 2010 at 11:10 PM
What an inspiring story, and what a determined little girl x
Posted by: ella | February 05, 2010 at 09:41 PM
I'm very moved to read your story. What a little smasher! She must have such determination and I think she gets that from her Mum? It has helped me to put a few smaller blips in my life into perspective, thank you for sharing.
Posted by: Diney | February 10, 2010 at 09:29 AM
A positive, beautiful, inspiring post. x
Posted by: If I Could Escape | February 12, 2010 at 05:30 PM