Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 In a message dated 10/26/99 7:33:38 PM Eastern Daylight Time, hkauffman@... writes: << hen you think about it, a 25% chance of inheriting a genetic disease is very high (compared to, say, the risk of having a baby with Downs Syndrome after the age of 35, which I think is about 1 in 200), >> Hey, what about the odds of having a baby with CF and Downs!!!! And I was only 30 yo. I wanted to comment on the latest replies of comparing who has it worse, etc. I'm not even sure how it started. But having a child with both a developmental and a medical challenge I guess I can relate to the Mom with the child with PDD and of course us, the parents of a child with CF. When I was told had Downs (I was in the operating room, having just had her by c-section w/ a spinal) the world definitely turned upside down and for about 24 hours I was in a medicated numb state, then the grief all of a sudden hit and I cried for days. But when I held her in my arms and nursed her I thought " hey, she is so beautiful and I love her so much, who cares if she'll never drive, live on her own (?), have children, etc., she is ours and forever will be. " My family has had quite a bit of experience in the field of " special needs " I have a niece with cp, cousin w/ mr, and even a distant cousin with Downs. Both of my sisters went into the profession. So of course everyone was very accepting of - how could you not be she truly is a beautiful child. It is no picnic at times, school is a constant battle and it hurts like crazy to see another child the same age do so much more than . But let me tell you when had her " firsts " (walking, talking, etc.) we celebrated them so much more than with our other two. Her accomplishments seem greater and there are many. I just said to myself this AM, that we took her grocery shopping on Sat and let her walk and she was wonderful, listened and even pushed a little cart and was a little helper. I thought Wow, what a huge accomplishment and it made me smile. That is the one thing about , she can always make me smile. Now ... the CF dx was very different. It hurt like nothing ever has. People with Downs have a shortened life expectancy, but it is in the 40's to 50's. They do have some health issues also but expected ones that are treatable. Yes, sometimes the CF is easier to deal with day in and day out compared to the Downs (especially when she is healthy) but the future....I have always been a goal oriented person until now. I enjoy every moment of every day and try not to think too far ahead. Right now is doing great, she is healthy, she is learning to write her name, she is in a class with " regular Ed " kids, she is riding a regular bus, she is busy being a kid and doing it all with a smile. So do I think I have it " harder " than some, maybe....do I care, sometimes....would I change anything, of course.....but never ever would I wish we didn't have , no matter what the challenges and no matter what the future holds. OK, enough, sorry this is so long. Thanks for listening. Sally Mom of na, & 6w/cf & ds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 , you either have a really good memory or you take notes!!LOL!!! I always forget who I tell what to, I always seem to repeat myself. I always seem to repeat myself. And I can never keep everyone on this list straight, I should keep notes. Thanks for the pat, you deserve one yourself. Yes, the party is every year and I have a huge wonderful family that helps a lot! Sally Mom of na, & 6/wc & ds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Hi Sally, What an inspirational post. I think you're doing a wonderful job with , and she sounds like a great kid. You're definitely dealing with more than most with CF and Downs, and I'm so impressed that you can 1) still see the humor in life, like when blamed her cellulitis infection on " Kitty " , and 2) move ahead and take on really big things, like when you had the huge party, bonfire in the backyard, all those guests, etc. this summer. And didn't you say you do that EVERY year? Heck, most moms with two kids and NO special challenges couldn't pull that one off. Give yourself a pat on the back :-) Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1999 Report Share Posted October 27, 1999 Dear Sally, I have been in awe of you ever since I started reading your messages on this list. You are definitely dealing with a lot, but seem to be doing very well balancing it all. Your very thoughtful comments on your situation were an inspiration to read. na, and are very lucky to have such a great Mom. ( and Sami's Mom) ----- Original Message ----- > Hey, what about the odds of having a baby with CF and Downs!!!! And I was > only 30 yo. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 In a message dated 10/27/99 6:43:15 PM Eastern Daylight Time, naelliott@... writes: << na, and are very lucky to have such a great Mom. >> , thank you..........please tell that to them!!Especially na, she is 11 and that is all I need to say!!LOL!! Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Sally, Although I'm almost past the " frog kissing stage " (well, I'm at the point where I can believe there will be an end someday), I thought with your 11 yr old you would appreciate the wisdom in this essay. I've had it on my fridge for years! Mom of Jasen 26 wcf & tx, Karyn 16 wocf & Kaylee 14 wocf (ribit) Parents get a double whammy when at the age of 10 their child becomes an early adolescent. Not only does the parent lose the adorable elf, the personable companion of the last decade, but the elf is replaced by a moody, distant stranger, obsessed with zits, peers, and hair. The early adolescent doesn't enter a room; it twirls, flails, slinks, sulks, or stumbles as it makes it's way to a chair wherin it sprawls in a dubious imitation of what an adult considers healthy posture. The early adolescent doesn't listen to music; it is engulfed by it. It grunts or yells. It slams doors. It likes to be alone. It likes to be with friends. It doesn't like being with parents. It thinks intermitantly, but mostly spends its time blow drying and tripping up the stairs. It feels so much that walking near it a normal 40 year old is displaced by it's energy. Even the coolest mother or father is not prepared for the amount of psychic space a 10 to 14 year old takes up simply by its existence. Parents who often question the shape of their own lives, while trying to cope with an early adolescent find it easier to be reactive than supportive. Kids start to interogate us, to look for inconsistancies. We think the kid is going down the drain, and we become more rigid and give them more rules. We change issues to fit our personalities. We give our middle schoolers mixed messages. We tell them to be themselves because we value individuality and then we tell them to be responsible , to plan ahead, and to get ready for college when it's all they can do to change classes six times a day and open their lockers without falling into them. When an early adolescent is being itself, it isn't being responsible in a way resembling any adult definition of responsibility. Adolescents are extremely egocentric. They live in an imaginary bubble in which they must be physically perfect for their perceived audience of thousands. One can liken the 10 to 14 year old to the frog in the well known fairytale. The beatiful princess saw something good in the frog and kissed him. The frog turned into a prince. What every kid needs is one adult everyday in his or her life who believes in what he or she can become. Parents have to be willing to kiss a frog everyday for at least three years. Why don't we all begin today. By Garvin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Dear Sally, is 10 and 6 months, so I totally understand! ----- Original Message ----- > , thank you..........please tell that to them!!Especially na, she > is 11 and that is all I need to say!!LOL!! > > Sally > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Sally-- LOL-- If I had time to take notes on anything my life wouldn't be so chaotic. I remembered the " kitty " incident because it really made me laugh (I have a good memory for all the Chia jokes and Mo and Jennie's shennanigans, too). And hosting such a big party just plain impressed the heck out of me :-) At 12:23 PM 10/27/99 EDT, you wrote: >From: RSBRT@... > >, you either have a really good memory or you take notes!!LOL!!! I >always forget who I tell what to, I always seem to repeat myself. I always >seem to repeat myself. And I can never keep everyone on this list straight, I >should keep notes. Thanks for the pat, you deserve one yourself. Yes, the >party is every year and I have a huge wonderful family that helps a lot! > >Sally >Mom of na, & 6/wc & ds Quote Link to comment Share on other sites More sharing options...
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