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Years Later

Hope4Grace
Hope4Grace Community member Posts: 2 Listener
in Start here and say hello!
Our daughter Gracie turns 6 years old today.  4 years after learning of her diagnosis of a spontaneous mutation of her GRIN1 gene we are not where we expected to be with her progress and it's very hard to cope with.  Even though we truly know she has come a long way cognitively, she still cannot sit up, walk, feed or talk much at all.  We don't sit around harping on what she can't do, we do focus on what she can do, but now turning 6 it's hard not to sit back and look at the big picture that it's been 4 years and we had hope for more progress.  This year alone has been even harder, just last month her first surgery to put in a feeding tube.  Coming later in the year a 2nd and more major surgery to fix her hip dysplasia. It's so hard on both of us to handle emotionally. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Hope4Grace and a very warm welcome to the community! Firstly, happy birthday Grace!!! I hope you have all had a lovely day.
    I cannot begin to imagine what it is like for you and your family but I hope the community is able to help in some way. All the emotions you are currently going through are completely valid, yes you don't want to dwell on the negatives but it is understandable to reflect on these.
    The community is a supportive environment to give and receive advice and I hope you are able to benefit from this. You may find the parents and carers and rare conditions boards particularly useful. Please do get involved as much or as little as you would like.
    Are you currently getting any support regarding yourselves or Grace?
    I hope you have a lovely day and if you need anything at all then please do not hesitate to be in touch! :)
    Scope

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  • Hope4Grace
    Hope4Grace Community member Posts: 2 Listener
    Thank you for the response.  We have been getting help from as early as 6 months old when we first realized something wasn't right with Gracie not meeting her milestones.  Here in the US we have Early Intervention until age 3 that provides therapist for PT, OT, ST and more.  At 3 we entered the public school so we could continue with therapies but after 2 years we realized this was not the best place for her.  This past year she has gone to great private school for children with disabilities were she sees better therapist.  As far as support for us as parents, not really.  We have one set of Grandparents the provide us with help when needed.  We get out for a parents only dinner maybe once a month though at the moment I can't remember the last one.  Getting back to the original post, how do we deal with not meeting our hopeful expectations on our child's progress?  How do we not want to meet and exceed goals for our child? Not only for her but for us too.
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I am glad to hear that you have a lot of support for Grace in place. Have you ever tried to reach out to parents who are going through a similar thing, or even try and find a blog that talks about a similar kind of thing. Of course you want your child to succeed and Grace is doing just that- just at her own rate. I understand that it must be incredibly difficult, but surrounding yourself with others who are going through the same thing can really help. We are an England and Wales charity so I'm not clear on the practical support which is able to help you. However, the community has lots of users, many of those who will be parents. Hope this helps a little
    Scope

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