Here are some suggested organisations that offer expert advice on SN.
DD has CP and I am devastated(58 Posts)
Well that's it really - I am completely devastated and not really functioning because it is all I can think about.
We always knew it was a strong possibility but pushed it to the back of our minds, but now, just short if her first birthday we have been told that yes she is showing symptoms so now we will start off on tests and assessments etc and who knows how badly she will be affected?
I just feel so sad for her - I don't want a baby with CP or anything else, I want my little girl to be perfect and I can't bear thinking about how her life might turn out if she isn't normal. Sorry if my language is not very PC but this is how I feel - this is how other people will look at her and what they will be thinking. I don't want her to be the girl everyone stares at or feels sorry for or laughs at because she can't walk properly. And how am I supposed to go on now just waiting to see how else it might manifest itself? OK now it's her legs, but what else might not be working as it should be?
I am just so very sad.
Oh Christ, I don't really know where to start but just wanted you to know that your voice has been heard and my heart goes out to you. If it's any consolation, my neighbour has a little girl who was born very prem and is classed as having cp and she is just divine and I'd defy anyone to say otherwise. She's funny, chatty, and her mobility has improved dramatically from when she was one - I don't know to what scale your dd is affected, but you need to speak to other parents in the same boat so that you can get some expert information. I'm no expert, but just wanted to give you a virtual hug and say don't panic about the future because it is often not what you expect. xx
Sending you a massive hug.....these things take time to get use to. The dx is a shock....given time you will feel more positive about your dd's future and smile at the wonderous things she can do.
I have two chidren with CP. I remember the feelings you are have well, there are days when I wish my Ds and Dd1 didn't have CP. Its a long struggle and bloodly hard work. The day they told me Ds had CP, I was reliefed that I finally had a name for his condition,. the day they told me Dd1 had CP was the worse day of my life, I cried and cried. You are in the grieving stage, for the child you have lose, the perfect one, and suddenly you have been told that your child doesn't fit that picture anymore. It does get easier and suddenly you see your child for what thy are, beautiful and very very special.
Is your DD sitting up yet? Its not actual science but generally if a child with CP sits up before the age of 2, they will walk.
I found Emily Perl Kingsley's poem/reflection "Welcome to Holland" very helpful when my son was diagnosed with ADHD and HFA - it still makes me sad - but it can reassure that although life takes a different path there is still a lot of treasure to be found on that path even if it's not the one you may have preferred.
I 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.
I interviewed a mum the other week who has a son with Down's syndrome. He's at mainstream primary and she said that, back when he was a baby, there was no way on earth that she would have believed he would be doing all that he does now.
In fact, I've spoken to a lot of mums recently who have children with special needs. And while I can't be certain, going on what they told me I think I can imagine what's going through your mind now; your thoughts for what future your daughter will have. But remember that she is only a baby. Nobody knows what's around the corner, so try not to "wish her life away" by thinking about all the things she may not do. Instead enjoy her for what she is, a gorgeous little girl. Don't make your mind up now as to how things will be; let her show you who she is going to be. I bet you she ends up surprising you.
My little lady has Downs Syndrome, so a DX for us was very early, in fact she was only hours old, but I suspected it from the moment they laid her onto my tummy, and she looked up at me.
It's not going to be easy but what child is? You may not know what you can expect from her in some ways, but can you of any child?
Take one day at a time, don't be afraid to be angry or sad. But remember she is still your little girl and she always will be come what may.
The support you will find here is amazing CheekyLady, you will not be alone in this feeling and you will always have someone here to share your good times with as well as your bad.
Hugs to you and yours.....Dingle.xx
That'll teach me not to refresh the page before posting ...
I was thinking about the Welcome To Holland poem when I was posting too Mothereve
Cheekylad, If you want to CAT me, you can, I have been through this twice and know exactly how you are feeling,
There's a follow-up to the Holland poem: it may not be much comfort now, Cheekylady, but it may be something to hold onto at a later date:
Celebrating Holland - I'm Home
A follow up to Welcome to Holland, by Cathy Anthony - a parent, advocate and Executive Director of The Family Support Institute in Vancouver
"I have been in Holland for over a decade now and it has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on when I first landed in Holland. I remember clearly my shock, my fear, my anger, and the pain and uncertainty. In those first few years I tried to get back to Italy, my planned destination, but Holland was where I was to stay. Today, I can say how far I've come on this unexpected journey. I have learned so much more, but this too has been a journey of time.
I worked hard; I bought new guidebooks; I learned a new language, and I slowly found my way around this new land. I have met others whose plans changed, like mine, and who could share my experience. We supported one another and some have become very special friends.
Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many encouraged me; many taught me to open my eyes to the wonder and gifts to behold in this new land. I discovered a community of caring - Holland wasn't so bad!
I think that Holland is used to wayward travellers like me and grew to become a land of hospitality, reaching out to welcome, assist and support newcomers. Over the years, I have wondered what life would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and, at times, I would (and still do) stomp my feet and cry out in frustration and protest. Yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too, and look closer at things with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it Home.
I have become a world traveller and discovered that it doesn't matter where you land; what is more important is what you make of your journey and how you see and enjoy the very special, the very lovely things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned yet I'm thankful, for this destination has been richer than I ever could have imagined!"
Mothereve, I love the follow up poem, have been on this jounery myself for 7 years now (5 years since Ds was diagnosed), and can appricate that one now...
Oh Christ - you have made me cry now. It's all I seem to do at the moment and I hate myself for it. Welcome to Holland is absolutely stunning - what an incredible way to think about it. But not yet. Right now I still can't get over the initial horror and disappointment. And I don't want to feel like this, because then I really am letting her down - I am like all the horrible narrow-minded people I am afraid she will meet during her life who can only see the negative things.
I look at her and she is so so beautiful and funny and she does the cutest funniest things and she is very sharp and clever but in my mind I am just thinking, "oh my God I don't think you are ever going to walk" and at the moment I sometimes think maybe it would have been better for her in the long run if she hadn't survived at all which is a terrible thing to say but do you know what I mean? Don't misunderstand me and think that I don't want her - I absolutely adore her, more than I can ever explain, but I want her to have the best of everything, and be the best in everything, and now this means that she is going to have some shitty times ahead, and I wish it was happening to someone else and not her.
Thats totally understandable CL, I felt the same. I have been learning on route, and it does get easier, believe me... BUT at the moment you need to grieve...CAT me if you want..
Also I went through the 'What will he achieve??' with DS, he is at mainstream school, very popular, is in a gifted group for maths, is reading at a year older level, his persecive view on life and things around him was recently assessed as being at 9.8 years (he is 7.4) his speech is outstanding and he can work a computer better than me.. so its not all bad..
Dd1 is struggling, I will admit that, she has learning problems, but I know she is able to achieve more.. She just needs more support than DS.
hope you feel better soon.
It's not wrong to have a good bawl - and when something happens like this then you will go through a time where you are grieving.
It seem odd to say that but you are grieving
for the life that you wanted for your daughter
for the life that you wanted with your daughter
for all the things that you wanted for your daughter
I still long for Italy, especially when things are rough, or I've had yet another battle with someone about my son.
It's not wrong to cry and think the things you are thinking - let off as much steam as you want where you feel safe. Throw things at the cat - punch a cushion - hit the keyboard and let off steam online - join a support group - nothing like a good moan together. DON'T bottle it up - worst thing for it.
Have a really good bawl then blow your nose, gird up your loins [do people still do that nowadays?], pick up the guidebook and get practising on the Dutch language.
I'm so sorry to hear about your little girl I too remember the feeling when you are told that you child is not perfect.I have a daughter with cp too,and All I can say is it does get better and easier shes nearly 11 now and copes very well.she walks a bit and uses a wheel chair for distance or if shes tired.she wants to be an actress or author when she grows up!recently she was an extra ina show to celebrate 60 years of a local theatre she fell over once but got up and carried on,it hasn't put her off.she goes to mainstream school and has a wide circle of friends and goes to parties and sleepovers,last week she went to pgl in wales with her class and came back with a very muddy wheelchair having had a great time.The school has been great they have always valued having martha there and to be honest i think most of her friends forget about the cp most of the time.the first days are the worst dont be too hard on yourself,try and join a support group and talk to other families that have been/are going through the same thing.Give yourself time to get used to it and don,t forget to enjoy your lovely daughter.
I also have a little girl with CP and remember feeling how you are now and to tell the truth do sometimes have days now 2 yrs on from being diagonised.
Although this might not help you - i was told the chance of my little girl ever walking we're slim to nothing - well she's walking now altohugh not completely perfect but she's getting round.
Sparklymieow is a great person to talk to and was the first person i spoke to MN about my daughters CP so if you need to talk i urge you to talk to her even though at the time what she saying i didn't fully accept in the long term of things she helped me look forward to the future.
All our children are special to us - ours are just that extra bit special.
Look forward to chating to you more and wish you and your family luck for the future.
Was I really the first person you spoke to here FD? It seems a long time ago now.. glad your DD is doing well, I'll chat to you on MSN later..
Ni sparkly - long time no speak. Hope all well. Still off the fags ?
Ds2 is 4 and has spastic diplegia cp, he is in a wheelchair,, trying to use a walking frame, but not doing v well atm with it. I had the same feelings as you, still do with some of them, but he's perfect to me just as he is now, wouldn't change him for the world. I worry about him as he gets older, I worry about little things he might not do that we take for granted, but I try and counter that with the attitude, that noone can do everything perfectly. He won't be able to run, but he's really smart, ahead of his age, that sort of thing.
You are also welcome to cat me if you want.
knowing mieow and her kids, i have to say they are lovely. this is a shock for you and you need to grieve. but you know what, you will pick yourself up and become a mother from hell finding and trying to get the best treatments for your dd. The Ladies on SN can point you in the right direction for the help you need, when your ready to ask.
and mieows son doesnt shush. and if your typing on mumsnet with him about he'l lread it over your shoulder, cheeky man!!
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