Special Needs

Anyone heard of MUMS?

I found out about it through ivillage. Basically it's a website run by a woman who 25 years ago gave birth to a SNC. She wanted to start a database for parents of SNC to be able to connect with each other. So in her database there are 4 cases of DOOR syndrome. With only 35 cases diagnosed worldwide, that's pretty good! So I sent $20 to get the names of these families as well as the MUMS newsletter. The other day I got the names as well as a description of these kids' symptoms. Uh, can we say DEPRESSING?! Among the highlights- profound mental retardation, nonverbal, deaf, blind, autistic, seizures, wheelchair, global delays. :Sigh: DOOR syndrome is progressive in nature. It is metabolic so while her condition is fairly mild right now, it will probably get worse as she ages. I want to contact there families but I am scared that they'll tell me that their DCs were born fairly normal but seriously got worse as they got older. And I don't think I could handle hearing that. For now, I still have hope to hold onto and I'm not ready for the scary reality that is DOOR syndrome. But at the same time, I am desperate to connect with other moms who have gone through what I am going through and can give me advice. WWYD?
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Re: Anyone heard of MUMS?

  • Whew...that is heavy.  At least give yourself some time to weigh the options of what happens IF you find stuff out that bogs you down.  You don't need extra undue worry... but I can imagine that the want to connect is very strong too.

    I dont know what I'd do if I were in a situation like yours. 

    Know my thoughts are with you and whatever decision you make, know you've done what you needed for you.

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  • I don't know how to really express what I am thinking, but, here is my best shot at it. Where would you be if Marley didn't have special needs? Would you be the kind of mom who would want to reach out to others and get advice? If so, you would hear from some moms who really struggle with depression--they might tell you that having a baby is horribly hard. You might hear from other moms who say that being a mom is a dream come true. Just look at the whole range of advice people throw out over on the other boards. Obviously, there are a lot of ways to get through the day--but, just because they are moms, they don't corner the market on 'right'. Being a mom to a special needs child isn't really all that different. If you are prepared for a huge range of advice, I'd say to go for it. If you are worried that their stories would depress you, I'd wait to contact them until you are so hopefull and happy to have Marley as a daughter that you know you can get through anything they say.

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  • I like that advice Rlou!!  Well thought out.
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