My Fantastic Family

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Autumn Walks 2008

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God's Special Child

This poem sums up everything my beautiful Tilly.


God’s Special Child


I’m sending you a special child to cherish in my name,

For you to love with all your hearts, and teach her just the same,

For she is not like other babes, nor will she ever be,

But can you love her just the same, and take good care of her for me.

She may not see, or hear, or run, or learn as others do,

But she’ll be yours and she will take her guidance from all of you.

The road is hard, she’ll break your heart, you’ll cry a million tears,

But I promise when she smiles at you the pain soon disappears.

I know you’ll cry, ‘why her? Why us?’ but I needed teachers true,

And that is why with care and trust, I’ve selected you.

So please don’t turn your back on her, although she may be slow,

If you’ll accept her as she is, then together you will grow.

She needs to learn the skills of life, for that I’ve chosen you,

And with your love to guide her, I know you’ll see her through.

Don’t try to see the future, I promise that to none,

Just live each day for all it’s worth, and enjoy my special one.


Author unknown.

The Good and The Bad!

OK so lets take a close look at a day with Tilly as when a tantrum hits it has been wiping away all the good in my mind and just leaving a big black mark for the day. My mind is saying '' ooooo look a tantrum, life is rubbish, this syndrome is going to ruin my life, Tilly is always wild and I cant cope with her, my life is over!!!'' but lets try to inject a bit of perspective on this, is this what's really happening or is my perception all at sea in a big black boat called shock?

The good things today started as soon as I went into Tilly this morning. A big excited grin from ear to ear greeted me when I got her up. The time by the way was after 6 o'clock, better than 3 o'clock! She played the piano that's attached to her cot before she wanted to come out and it was gorgeous as she kept turning to me to check I was watching and her eyes were just full of love. Big bear hugs while I was changing her and she signed for more hugs...now my day doesn't get better than moments like that.

Downstairs I had time to go on the computer first thing and drink coffee. Tilly left my book alone and went to her own when asked! We got out of the house and had a lovely time at nannies house. She loves her nanny and laughed at nannies big bear hugs that are even bigger than her own. She also got to play with her Uncle John who also loves her very much.

We had loads of fun tonight as well playing dive bomb onto cushions and also push you down in her cot where I pounce on her and squeeze her into the mattress. I am going to do more of this sort of thing as I am becoming more and more aware that her 'proprioceptive sense' or her sense of her body position is all out of sync. She does things like push her arms and feet against me when she needs settling as if she doesn't know where her extremities are. She also slaps her feet when she walks and slides along the hallway pushing her back into the wall as she goes. My husband always said she walked down the hallway like this as the floor is normally covered with piles of washing thrown over the banister from upstairs and he thought she had got so used to sidling past the mess she couldn't revert back to ordinary walking!!! Damn cheek!!

The not so good, OK she had about 3 moments at nannies where she threw herself down and head banged...tiredness and not being able to get 100% attention from nanny as she was cooking the main reasons, also a door opened that she didn't realise would and she hated the surprise. but we all survived them! she has grabbed pops hair only once today again for my attention and she exhausted me with constant demands to play all evening but then what mum of a toddler doesn't also feel like that!

All in all who could complain about a day like today! A shiny day indeed. Oh yes and I have had some lovely new friends make me really laugh on an sms support forum found at smithmagenissyndrome.ning.com and also last night me and hubby got a night out in Northampton with my lovely sister to see the show STOMP whilst my hubby's mum and dad babysat. Oh and both girls were fine being put to bed by nanny and granddad which was a first! There you go who could ask for more, family around, good friends, moments of laughter with children and adults, smiles and love. That puts the few tantrums and stress into a bit more perceptive. A shiny day indeed!

Early Days and Emotions.

OK I am going to try to let you know how the last 3 weeks since Tilly's diagnosis has felt for me as mummy. This is probably going to be one of the hardest posts I will have to write and it's certainly scary putting it in print but honesty needs to be on these pages if they are to be of any value at all. Please remember I am trying desperately to exorcise my own demons here and also providing an honest voice to support any reader going through the same emotions. How demoralizing to click on a blog that skims reality, as one good friend put it recently, 'this is your life Jane not a feel good movie about coming through adversity...of course you feel like you do!!!' So how have I really felt?...
I need to start this post with what is probably an attempt to defend myself and let you know I am not the monster I fear I may have become. I am a fantastic mum or at least that is an everyday aim! My children's needs have always come first, no question...I love them more than life itself and would die for them in a heartbeat...I would do anything for them and have often said having children is like the best love affair you will ever have. I had no 'testing' whilst pregnant as I am very 'pro life' so what was the point and always said 'no matter what' my babies are my babies. Well its now time to put my money where my mouth is!!!

So surely with this in mind, I took the news as a shock but shook myself down, accepted the new reality and rolled my sleeves up to get on with things and support my now extra special baby with love and patience. Yes you would think so wouldn't you...I would have put money on this from my 'perfect world' viewpoint of not so long ago. But the reality of how the shock hits you is breathtaking and it sent me to places I cannot believe anybody could ever go.

Physically I cried for 2 weeks solid, didn't eat or sleep, rocked in corners in agony and couldn't even think! This last week has been slightly better, I have come out of this at times but am still crying an awful lot. But emotionally...this is where the battle has been the toughest! For a good 2 weeks I didn't even want Tilly...basically I wanted her to die! I spent 1 evening begging my husband in tears to let me give her over to care, I prayed that the heart testing she underwent would come back with a major fault that would be terminal and then spent days crying that in fact it was all ok and she had no heart problems! not a great mental place to be when friends and family are all saying 'oh that's fantastic, you must be so relieved!' and all the time I was thinking, 'no I'm disappointed, my life sentence is now written in stone!' I had 2 weeks contemplating suicide, and realising I couldn't leave my husband, who i love very much, to deal with Tilly on his own so I was making plans to kill Tilly and then myself!....how far from thinking and actually doing was I???...who can tell, my guess is at times not far, but that's for people more expert than me to ascertain. I spent a morning trying to talk my husband into getting some 'pills' for all the family...basically i just wanted the pain to stop and to be 'out' of this situation.

The horror and guilt of my own feelings that accompanied these days was also too much to bear. On my worst days there was no horror and I suspect that's when I was at the very edge of my own personal cliff! One day my husband yelled at me that my thoughts were 'disgusting'...I didn't care at all, I had no reaction in me, I couldn't care if he ever forgave me or not for what I was saying, I just didn't CARE and wanted us all dead! But as these first 2 weeks went by I did begin to care about these thoughts, I was scared I had become the woman who was only 'pro-life' as long as she had perfect babies! was I really THAT WOMAN that hypocrite of epic proportions! I don't think I am although going into week 4 I still am slipping but only momentarily back into the darkness.

Most of all I was scared that I would never love my baby again! 4 weeks ago I loved her more than life itself and then overnight I could hardly bear to look at her. It didn't help that her behaviour also escalated along with diagnosis, so it was like a double whammy of not knowing who or even what she was anymore. I still am scared I may nor 'find her' again with the same sort of love I used to feel. Do I still want her dead, GOD NO!!!! do I want things different GOD YES!!!! do I want to escape GOD YES!!!!! do I think I can cope GOD NO!!!! am I willing to find a way GOD YES!!!! (but only because I have no choice) I cant say anymore at the moment but I needed to say this to possibly reach out to anyone else feeling the same things, there may be some comfort in knowing you are not alone! People may think I'm a monster, I know I am not, I am a good, kind mum who loves her children very much.

On 1 of the sobbing, rocking nights of that first week I sat and read a book given to me by a good friends mum (she was the lady who first suspected something very wrong with Tilly). I was furious to be honest and hid the book on the bookcase out of sight, its called 'your child with special needs' by Susan Kerr. In the midst of anguish I found the book and read and found comfort immediately in the fist chapter entitled 'facing up' she speaks about the natural cycle of feelings that parents often go through in situations like this. With relief I read that it is NORMAL to have these emotions she writes as she describes this first and very raw cycle of feelings...

''TORN FEELINGS ABOUT YOUR CHILD...feelings of love/hate or 'i wish she or he had not lived' are as normal as guilt and anger and asking why. You wont always feel like this;try not to feel guilty when you do.

RESENTMENT...At the sacrifices you have to make in your own life: social, career, financially, family. At a loss of being a normal family.

PESSIMISM...Why bother?

DEPRESSION...over the unanswerable questions about your child's life.''

All of these things described me and there is hope in reading it is a cycle of emotion with an inevitable moving on stage. As we all enter week 4 it's still tough but there is a slight feeling of a new phase approaching. Susan goes on to write about

'NEGATIVE TO POSITIVE... in time you will fit your child's needs into your everyday life. it won't always be a crisis, it won't always be new. your learning curve levels out, although you'll always be learning more...With knowledge and settled routine comes confidence, more energy a sense of perspective....Among the qualities parents have said they have gained from having a child with special needs are: strength, tenacity, assertiveness, understanding and patience.''

Well i am looking forward to the 'moving on' i am fiercely determined to love my child EVEN MORE and I will not remain the hypocrite who cant actually cope with this 'non perfect' world that's been handed to her. I hope people understand why I needed to post this and I send all the love in the world to anyone reading who is where I am now. Hopefully as I continue to write, my story will show the moving on phase as a joy filled journey, and hey who wants to be normal anyway...the final words I give to my husband who has had no chance to fall apart as I have been doing it for both of us, he very wisely said,

'Neither our child or her syndrome can ruin our lives, but we can!'

Looks like its time to roll my sleeves up and get on with it then!