bettyandbob Posted January 22, 2013 Share Posted January 22, 2013 My birthday was a few days ago. I have a ds with down syndrome. On my birthday, while we were out to dinner at a burger joint, my ds said "I love you, Mommy." It took a minute for me to understand what he said. He doesn't often spontaneously string 4 words together, really not at all in the last year after all the bullying he went through. He's never said "I love you," to anyone. He said that a few times at dinner and I was happy and I did hug him. However, now when I think about it I just get sad. I just think about how long I have waited 11.5 years to hear those words. And I'm jealous of other mom's with dc who have down syndrome who don't have the serious speech problems mine has. In fact I have yet to meet a child with down syndrome with as severe speech problems as my ds. I know adults who do, but often the problems adults have are explained by having been born in a time period when interventions were not done for persons with down syndrome. So, here I am and I cannot be just happy. And I feel terrible that I feel that way (a self defeating cycle). I guess I will snap out of this soon. I hope this was a safe place to say this. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 22, 2013 Share Posted January 22, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
celticmom Posted January 22, 2013 Share Posted January 22, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Country Mouse Posted January 22, 2013 Share Posted January 22, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
mom2myboys Posted January 22, 2013 Share Posted January 22, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Freckles Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted January 23, 2013 Share Posted January 23, 2013 Tons of hugs. Quote Link to comment Share on other sites More sharing options...
Rosie_0801 Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Mabeline Posted January 23, 2013 Share Posted January 23, 2013 Hugs Quote Link to comment Share on other sites More sharing options...
Rebel Yell Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: What a sweetie. I'm so sorry you're having a hard time. SOmetimes good events really do remind you of how much you're missing. I understand in a very small way. One of my very first friends had Downs. :grouphug: Quote Link to comment Share on other sites More sharing options...
SunnyDays Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: Sometimes life is very bittersweet.... I'm sorry you're struggling. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted January 23, 2013 Share Posted January 23, 2013 My heart breaks for you. Although my situation is a little different I feel like I understand. My ds has cerebral palsy and epilepsy. He has never been invited to a birthday party or sleepover like my other children. He loves football so much but will never play on a team. Sometimes it's hard to feel happy about what he has accomplished because I am sad about the things he may never do. Fortunately these feelings usually pass and I hope yours do as well! God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
applethyme Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
texasmama Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: (My birthday was a few days ago, too.) Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
ChristusG Posted January 23, 2013 Share Posted January 23, 2013 Very bittersweet for you. My nephew is 10 and has Down Syndrome with severe speech issues as well. I'm not around him too much since they live in another state, however, I've never heard him string any words together. You are not alone. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Lara in Colo Posted January 23, 2013 Share Posted January 23, 2013 sometimes "should' isn't enough. You feel what you feel. That doesn't diminish your child in any way or your love for him. Go have a cry and some chocolate in the bathtub. Lara Quote Link to comment Share on other sites More sharing options...
MrsBasil Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
catz Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Caraway Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Remudamom Posted January 23, 2013 Share Posted January 23, 2013 Aww. Get him to say it to you over and over! Congrats!!! Quote Link to comment Share on other sites More sharing options...
FloridaLisa Posted January 23, 2013 Share Posted January 23, 2013 I cannot imagine pouring so much into your sweet boy and not being able to receive back. But, ahhhh!! It's there!! And for him to muster it up on your birthday, not once but a few times? Wow. I do not stand in your shoes at all. But I do know what it is to be sad at even happy things because of grief. It's healthy to allow yourself to grieve what is not. Many hugs to you. :grouphug: Lisa Quote Link to comment Share on other sites More sharing options...
jelbe5 Posted January 23, 2013 Share Posted January 23, 2013 Hugs to you. I have a son who is 15 who has autism. I empathize with you. It is okay to have some time to be sad and to grieve - it is very much a loss; the death of your hopes, dreams, plans for the future, for all you envisioned your child would be . . . and it is hard because this is a re-occurring loss. When you see other children who are the same age as your sweet son hit important milestones, you will feel a loss, even when you are happy for those others. It isn't fair. You know what I mean when I say here "I never would have asked for this." But I can tell from your post how much you love your son. I am sorry for your sadness . . . I find, for me, it helps to have a time to be sad and acknowledge that sense of loss and "why does it have to be like this?" rather than just stuff it down or wish it away. Then, after I have given into those feelings for a bit I am better able to come back and see the little triumphs we rejoice over. Well, those triumphs may seem little to others, but they are huge to us! Thank you for sharing the wonderful birthday gift your son gave you . . . and for sharing your pain, too. I am sending you cyber hugs and I want you to know you are not alone here. Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 23, 2013 Share Posted January 23, 2013 Awwww. Hugs to you. Quote Link to comment Share on other sites More sharing options...
myfunnybunch Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: So often, I have found that my daughter's milestones make me feel a mixture of happiness at a step forward and a good measure of grief that those milestones were so hard-won, and for those she may never reach. I don't admit those feelings very often either--we're supposed to be happy, right? But what you're doing right now is really healthy. You're acknowledging all of your feelings. Naming it and grieving over it (again...sigh...) Be kind to yourself. If you didn't love so deeply, and give so much of yourself, you wouldn't feel so the hurt so deeply for your child. What a sweet birthday gift. :grouphug: Cat Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
jenL Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
GailV Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: Quote Link to comment Share on other sites More sharing options...
sassenach Posted January 23, 2013 Share Posted January 23, 2013 My son has severe CP. I know this feeling. He's always the most severe in his classes and sometimes I find myself ridiculously envious of the kids who have some form of communication. He has none. I have dreams sometimes that he talks, but he's never said a word. I wake up happy but sad. It's ok to be sad. It's ok to grieve. We know you love him. HE knows you love him. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted January 23, 2013 Author Share Posted January 23, 2013 Thank you for your kind thoughts and hugs. Quote Link to comment Share on other sites More sharing options...
athomemom Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Elinor Everywhere Posted January 23, 2013 Share Posted January 23, 2013 :grouphug: :grouphug: {{{{Hugs}}} to all of you who posted in a similar situation. I cry just thinking about it. :crying: Quote Link to comment Share on other sites More sharing options...
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