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Post by jessjetland on Mar 5, 2009 10:31:48 GMT -5
There is not much I can say that others on this wonderful site haven't said yet. I remember feeling alot of what you are feeling now, hang in there. You will have many ups and downs to come but in time you will see what a blessing you have. Jess
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Post by CC on Mar 5, 2009 15:51:51 GMT -5
HUGS Give yourself time would be my best advise. When my Christopher was born I cried 24/7 for a week and a half and then the day came that I only cried half of the day. Each day from there just got better and better. Christopher is 16 now and just a super young man, a real character for sure I won't lie if there were some magic pill that could take the DS away you bet in a heart beat I would be on line for it for my boy. But there isn't and I think we as parents rise to the occasion, KWIM? Your feelings are yours and its OK, But I will bet my last dime in time you will look back and say WOW I can't believe where I was with all this and where I am now ;D Enjoy your precious little baby and I hope you continue to post here at Uno. CC ~
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Post by steffipoo on Mar 5, 2009 17:16:33 GMT -5
I get mad when I hear parents say that their DS child is a "blessing" and the best thing in their lives. I am not sure where the anger comes from. Maybe because I can not see a child that is going to be more work or not live up to what you thought your child would be like as a blessing. Or maybe because I have not come to that place where I can see myself as feeling the same way. I am just so confused about how I feel. One thing that I am not confused about is that I love my baby and I want him in my life - in our family OMG OMG OMG....First off congrats... I know it feels weird when someone tells you that but really one day I swear you will look back , read your writings and think wow what a difference a few years can make. I was sooo delighted to read what you wrote, so brutally honest and lemme tell you pretty much exactly the way I felt about my gal Olivias birth. I too had no idea and the thought never ever ever ever crossed my mind. Not even once for a second ever. AND I too had felt the weirdness my friends and family felt when they told me congrats.... It was almost like they looked up what to say to me then said CONGRATS with a bit of trepidation as they could see I was constantly on the verge of tears. I remember about 3 weeks after Olivia was born a wonderfully caring lovely lady from my area called me up introduced herself and asked if I would like to meet her and her son.(with down syndrome) I said yes but man did I hate this perky happy excuse for a human being who kept extolling all the virtues of ds and how BLESSED she is etc etc etc... I couldn't get that oxymoron blessed/down syndrome got into the mix. I was angry.. yup I was... but had to put on a face for my son who's a year older than his sis. Then me,prior to my computer days, got on the bandwagon being an information junkie got every single book on ds. BOY oh boy was that bad timing for me to start reading about anything that was too far ahead of where Olivia was right then and there. ALL I got from the books at that time was what she won't be able to do for a long time. I OBSESSED that the books said she may not be potty trained till 6 years up and older, and that her speech may not be great. etc etc. ALL I got from those books at that particular time was depression. So big suggestion here. Try to read up on stuff that is pertinent to your child RIGHT NOW or soon coming up. Find other parents in your area(WHEN YOUR READY ONLY THOUGH) but give it a shot by calling your local down syndrome association and finding when there are new parents meetings(these meetings are fabulous and you get to meet other parents who will give you invaluable information about your community and services etc.) When I met this boy with ds it was far too early as I had not really gotten past the anger acceptance stage etc. Now this child had really rough speech and had hitting and pinching issues so all I could see was the negatives as well I just wasn't ready. So.....it took me until my girl was about 4 and a half months old( I know who's the slow learner here??? lol) to just breathe stop reading the books and deal with today and enjoy this day. I think the fact this was about the time I started seeing a real HUGE personality in my girl. The BIG smiles laughs babbles etc. and, so by then I had gotten her into a group based early intervention program(she was 5 months) that I attended with her 3 days a week. Then Olivia got ill with huge breathing issues she always sounded rough but we attributed it to ds as everyone else did or to an infection( we found out at the age of 8 and a half months it was a vascular ring ( her subclavian had wrapped around her esophogas and trachea like a noose and she was aspirating and having low O2 sats) got it repaired and this is when her n I bonded like crazy. All the time she was hospitalized ( from 6 months of age till about 14 months with pneumonias and surgeries(she had /has no heart issues either now this is really a blessing for our kids as you must know being an RN) we sat in the hospital room together singing laughing teaching her words etc etc playing. We just had all this time to connect and I found what a wonderful happy silly smart smart gal I had here. I will tell you that when he is starting to respond to your words that if you just get more animated he will watch you like a hawk and start to imitate. I had a song with little dancing moves for everything. baths eating etc. . It took me a while to accept and stop being so very angry and I thought really and truly that MY LIFE WAS OVER. I remember saying those words to myself a couple weeks after her birth. In a fairly short period of time things changed. Now my gal is 11 years old...She reads writes, speaks like a champ,does double digit math is incredibly nice and LOVING and is loved by our community. And ya know I have always set my standards high for Olivia. Never underestimate. You can always alter it if this is what is necessary. I will send you a link so u can see my gal on youtube yakking away. She's a trip and now I can't ever ever imagine life without my lil stinker. Write back. (((HUGS))) Steff Here's the link but am gonna add new ones tonight these are old from 5th grade... www.youtube.com/steffarama
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Post by twosomy21 on Mar 5, 2009 18:44:40 GMT -5
i have read your post and i did become teary eyed it is normal to feel what you describe. i think my exp. as well as others here is what brings the "memory lane" tears but be assured this is the best support system for your family, your son and i have noticed "mom" benifits the most . i must say the absence of any medical issues at this point is awsome and i hope you post pics soon.
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Post by babyC on Mar 5, 2009 19:59:54 GMT -5
Hi Everyone~
I want to thank everyone who wrote on the board and who emailed me privately. It was wonderful to have my feelings acknowledged as being normal and not straight jacket crazy. There were even some comments made by other parents that I had thought about and not written on the board. Those thoughts were even more intimate and soul-baring. To realize that other parents thought of them too lifted a weight off of me.
From the advice given, I have learned that I need to concentrate on the NOW and be grateful for what I do have. I have a wonderful 7 week old son. He does not have any medical issues, can lift his head for several seconds, turns his head well, makes great eye contact, and good muscle tone. What I do NOT have to do is look for shadows under the bed, worry about what will happen when I do not have any way of knowing or changing the outcome. To not idolize the son I did not have especially since there is no guarantee that he would have turned out like I dreamed about. To learn to be happy with who he is and what he can do. To give up trying to control things and put them into neat little boxes. I am a doula and I know that even the best laid plans do not go as planned but that the result can be just as rewarding. Even Colin's birth was not as planned. I wanted birth of around 6 hours, at home without medicine, and to take pixs and video. Instead I had a birth lasing 1 hr and 15 mins without any pixs or video until after the fact. But I did have him without meds at home and I got a wonderful son. Plus my midwife was The birth itself was wonderful although too short. Also, to rephr min too late so it was just my husband and I to deliver him which was unbelievable. I need to reframe what I think about DS and and how it will affect the family as a whole.
I do feel better after reading comments and suggestions by everyone. Thank you so much for opening up and sharing your story.
Cheers, Kelly
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Post by Jackie on Mar 5, 2009 20:13:46 GMT -5
Wow Kelly...I was just in Charlotte two weeks ago. My son and his family live right over the border in Indian Land SC. Too bad...we could have met. Also my niece who is getting ready to have her second...is also a doula in Lawrence KS. And my DIL Jess in SC works at a hospital there in post partum. They have 4 kids and are pondering a 5th. You would probalby like Jessica...
Jackie
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Post by sd112170 on Mar 5, 2009 21:15:41 GMT -5
Charlette, NC!!! Not to far from me. We can eventually meet, in time. I want to offically say welcome, welcom to the family. You will love it here. Get ready Mom, he is going to take off and run with it, it sounds. HEHEHE John has kept me busy. He had his first taste of dog food today. Didn't feel like a great mom on that one. You will have a blast, just wait!!
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Post by Googsmom aka Jennifer on Mar 5, 2009 22:38:56 GMT -5
{{{{{{{{HUGS KELLY}}}}}}}}}} Hang around here. It will make you smile ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dog food......LOLOLOL Yea John
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Post by Chris too on Mar 6, 2009 7:55:41 GMT -5
That was a stroke of genius, Jennifer, posting that list. I had forgotten all about it. What a great encouragement it is.
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Post by char on Mar 7, 2009 17:13:57 GMT -5
Welcome, and thank you so very much for being so honest. I admire and respect the fact that you could express exactly what you are thinking and feeling. I'm the grandmother of a little girl named Abbigail. She'll be four on June 3rd.
My grandson was born in 1990, and I guess his parents had tried for a long time to have another child. I never thought it was my business to ask. How surprised was I when they called me in February, 2005 to tell me they were pregnant with a little girl. All I could do was cry! They then told me she would be a "very special little baby."
My son had help with Special Olympics as a teen, and I had taken care of a 17 year old young lady with Ds, so we were not completely unaware of our futures. What we did not know was that Abby would be born 10 weeks early and be given less than a 10% chance of survival.
At that point the Ds became the very least of my concerns. She was in the NICU for 81 days and on the vent for 41 days. Several times her doctors stated that they'd done everything medically possible and her survival was now up to her.
The first time I saw Abby I just stood in the room at the hospital and cried. She was so tiny and had so many tubes going so many ways and I was terrified. I wanted to touch her but was afraid. I was allowed to change her little diaper and feed her through the tube, and those small acts produced more tears.
My greatest concern was simply that she would not live.
Her parents and her brother had moved into Ronald McDonald House. My son's a firefighter and had ample sick leave. They arrived every day before 8:00 AM and stayed until well after 11:00 PM, and they did that for 81 days.
Today Abby is active and on the go. She is a tiny little one at 32 inches tall and only 27 pounds. Just the other day I called and she said, "Hi Grandma" for the first time...except it was, "Hi Mamaw" and I loved it.
Abby's brother adores her. I call about four times a week or they call me. It never fails that when I ask what Abby's doing, I hear that she's playing with her big bro! She thinks he's the most wonderful person in the world.
When he graduated from high school, he got his deploma and a long stemmed red rose to give to the woman of his choice. He took his rose straight to Abby, she accepted it with the most glorious smile on her little face.
One of the things written about Michael was how wonderful he was to the students who needed extra help with any kind of issue. He was and is so willing to provide for those who need a little bit more than the rest of us need.
My sweet baby girl just gives me so much joy, and my hope is that I'll live to be a very, very old grandma so I can enjoy her for a very long time.
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Post by laurasnowbird on Mar 7, 2009 17:45:04 GMT -5
Char,
That should have come with a tissue warning. You are SUCH a doll.
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Post by Deannalee on Mar 8, 2009 1:21:11 GMT -5
Congratulations on the birth of your baby boy!!!! Every person deals with the news differently. For me, I am a single mom and was pregnant with identical monoamniotic twins with DS. I was crushed at first because, being a nurse, I knew the challenges ahead of me. That is what scared me...the challenges medically....not the actual genetics of it. After the inital shock, I came to terms with my new future. What affected me the most was learning that Jordan would die....possibly before birth. I fought like hades to try and save his precious life. Justin, my survivor, is my blessing. HE has taught me to slow down, be patient, and how to accept things that can't be changed. He was born a micro-preemie and has had multiple medical issues and multiple surgeries. He has beaten so many odds....with a smile and a drive I have never seen in any other human. For me....he is my angel on earth. I think he is beautiful....loving....rotten...everything all of my other kids are. My other children treat him like any other younger brother. We all work with him to help him succeed.
It is a process that won't happen overnight. Each person reaches this stage at their own time. Each person deals with grief with any diagnosis they weren't expecting. This board is a great sounding board. People have gotten their diagnosis at different times. I knew before my twins were born that they probably had DS. I knew the next day after their birth that they had it because of their eyes.....but I also had been able to prepare for that possibility.
Give yourself time.
Deanna
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Post by Debbie on Mar 9, 2009 20:01:36 GMT -5
Welcome to Unomas Kelly. I know you will like it here. No one judges anyone on here we all listen or read and offer advise if needed. More often Umoas is a shoulder to cry on and a hand to type encouraging words.
I am Debbie as you can see. I am not a parent but an adult with Down syndrome. My age is forty eight. I can type up what I feel and hopefully offer insight as to having Down syndrome. I won't suger coat what you are going through. It will be hard but acceptance comes from educating yourself. I did this myself in my early twenties. I was angry. I dd not want to have Down syndrome. I did not like it. I have learned to accept myself as a person with Down syndrome and move on. I am able to write and read well. I have used these talents to my amusment and to learn new things. Sometimes this throws people off.
AS some of the parents have said, give yourself time to grieve and accept. It takes time. Take care of yourself. And get on Unomas often as time allows.
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Post by Jodi on Mar 11, 2009 12:34:10 GMT -5
Debbie - as always, thank you for providing your perspective on matters such as this. As a parent I can offer my story, but hearing from someone living with Down syndrom is very powerful. I can't imagine how hard it must be at times to read how a mom was heartbroken over this, but I am sure that by now you realize it is with love that it is said because we always want our children to not face any kind of difficulties in their lives - it's the nature of being a parent All I can add is that we are all human. Some of us have conditions. Some are more severe than others. But we are all human. I chose to have a child and it is unfortunate that he was born with that extra chromosome. There are other misfortunes we experience in life. It is what we do with what we have that defines our humanity. I love and adore my child. This would not change regardless of his condition or ability (check with me again when he is a teenager though!). Only you can decide how you want to feel about that extra chromosome. Please know it is not the end of the world, although it may feel that way for a while. This may throw a wrench in your life plans, but I have to say that not much has gone the way I have planned. If you choose to, you will make the necessary adjustment and realize that your child is still your child and will still need you to be his parent to provide love and guidance. Jodi
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Post by Debbie on Mar 11, 2009 19:42:15 GMT -5
Thank you Jodi. And yes, it does make me feel sad but, I have to remind myself that every parent is different and has the right to feel sad on learning that their child will have a disability. I don't read the abortion posts though. I just can't read them.
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