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Post by edugator on Feb 14, 2008 21:23:55 GMT -5
Jessika- First and foremost, congratulations on the arrival of baby Noah! I know exactly what you are feeling- even had a big move when my little guy, James, was 6 weeks old (ironically FROM the Tampa/St. Pete area ) Know that you are not alone in your feelings or your journey- this site technically may be made up of 'strangers' but we are strangers who love and care for one another- even if some of us aren't big posters. Read and post when you can, find comfort in what is shared. And try hard to not be frightened by the families who are farther along in their journey who may be experiencing and sharing some bumps in the road. As a mom of 3- and one on the way- I can tell you that the bumps exist with ALL kids- typical or chromosomally enhanced. Right now heed A's advice- take each minute, hour, day as it comes. Some minutes, hours and days will be better than others...but you will get through them! A. referred to some FL moms - I am one of them. I grew up and taught special education in Pinellas County- where St. Petersburg is. Do you have a definite area you are moving to? Please feel free to ask any questions you may have about the Tampa/St. Pete area- I will do my best to help out! Again, CONGRATULATIONS! And welcome to the Uno Mas family! Tracy
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Post by laurasnowbird on Feb 14, 2008 22:02:07 GMT -5
Jessika,
Congratulations on the new addition to your household! I remember those early days very well, and the initial shock was hard to take.
Please know that your feelings are completely normal, and don't feel guilty for those feelings. The only thing worse than feeling bad is adding guilt to your already full plate.
Take it a minute, an hour, a day at a time, whatever you can handle now. Cry when you need to, and don't get down on yourself for needing to cry. Try not to let it become a habit though, because later, when you find yourself madly in love with this little person, you'll probably feel like it was wasted time. I know that sounds ridiculous now, but we've all been there. That falling in love may take a little longer, but when you eventually take that tumble, it's a one-way fall.
As far as reaching out to other families, do that at your speed as well. I had a very well-meaning family who lives near me contact me soon after Ethan's birth. They knew of us through a mutual friend, who shared my phone number with them. They are wonderful people, and absolutely meant the best, but I really didn't want to talk to them, and I'll tell you why. Their son was about six years old; they were very proud of him, and rightfully so. But I was still dealing with a new diagnosis, and I'll be perfectly honest with you, I had NO interest in seeing what six-year old DS looked like. At the time, I made dumb excuses because I felt like a horrible person for feeling that way. How could I say "I'd love to talk to you, but I DON'T want to meet your son just yet." ? That was exactly what I felt though - I was barely coping with 2 week old Down Syndrome, and had no desire to get a glimpse of my future just yet. Since then, when I talk to new families, I always tell them they are welcome to meet Ethan, but if they would like to wait, I totally understand.
I'd like to share one last thing. My kids range in age from 21 down to 2 years old. My oldest son Nick was 15 when his little brother with DS was born. He already had a little sis, but was sooo excited to be getting a brother. When Ethan was born, even he felt like he had been robbed of something, that he wouldn't get to do all the things he'd dreamed of doing with a little brother. He was very sad about it in the beginning.
Fast forward about four years, and we had another baby boy, our little Aidan. When Aidan was about six months old, Nick and I were sitting in the kitchen chatting as I made dinner, Aidan was in his walker being as adorable as only a six-month old baby can be, and it suddenly struck me that Nick now had that little brother that he'd dreamed of. I asked him, "So, are you glad to have a little brother now that you can do all those cool things with?"
He looked at me, looked around to make sure the sibs weren't within hearing distance, and said to me in his quiet, sincere way, "Mom, Ethan is my favorite sibling. I wouldn't change a thing about him."
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Post by damarasmom on Feb 14, 2008 22:09:01 GMT -5
As you can tell, we all have felt this way! So please do not feel alone. We will all be here to support you, answer all your questions or just listen. Please feel free to vent at any time...and CONGRATS on your new baby!!!
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Post by sandi on Feb 14, 2008 22:10:21 GMT -5
Wow Emily is beautiful! I cant wait till my Cassie gets big. I sure have a lot to look forward to. Thanks for sharing that pic Jackie.
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Post by Chris too on Feb 14, 2008 22:52:29 GMT -5
I've been reading through these wonderful posts with tears streaming freely down my cheeks. I want to welcome you, Jessika, to this marvelous community, and I hope that these posts have given you encouragement. They have me. When my Stevie was born I knew right away that something was different. The umbilical cord was too small, she was too small. After 5 typical births, this one was decidedly different. Then they put her into my arms & I looked into her sweet face & knew she had Down syndrome. It was the elephant in the room since no one mentioned it - especially not me. I was afraid that if I said it, it would be sealed. When I later mentioned my suspicion to my husband, he said "that's ridiculus. She's perfect, her eyes are just a little slanty & she's a bit squished from the birth." But by next morning, he said that upon reflection, he agreed. She looked perfectly typical when asleep, but as soon as she opened those baby blues, it was obvious. The pediatrician came right after church (he was still wearing his tie ), and, with the sweetest, most encouraging speech, told us that he was as certain as he could be that she had Ds. The tests were just a formality. I cried, but my husband just made the mental adjustment tearlessly. It made it easier for me to move past my tears for him to be such a steady rock. Then I got to work finding out everything I could to make sure she got all the help she needed to do the best she could. She's a delight in every way, and our family would be incomplete without her. I look forward to reading your stories of joy as Noah grows & makes you proud. I sure do hope you decide to stick around to tell us all about your new discoveries about your little guy! Welcome to Unomas! Chris too
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Post by elizabethsmom on Feb 15, 2008 1:31:52 GMT -5
Let me second everything that was said by those before me!! Every feeling you have is normal.
I have an 11 month old, Elizabeth. We did not know until she was born that she has DS. I have an 18 year old son and twin 15 year old daughters. Everyone was a little frightened at first...what did it mean? would she be sick? would people make fun of her? etc. She had multiple problems at birth and spent some time in the NICU. She was also born with a cardiac defect. Their fear turned to love within minutes of her birth. She is the joy of our lives! She had open heart surgery at 5 months of age When we were allowed into the ICU to see her and she was sooooo still, my 18 year old son broke down and cried his heart out! He said he was so terribly afraid she was going to die that he couldn't bear it. That is how much he loved her! Now she is healthy. She rolls over and pivots if on her tummy to get to her toys or to get situated in her crib "just so". She is opinionated!!! She loves her siblings and her daddy! When they walk into the room, she "turns on". Over the course of the 18 years I've been a mother I have discovered that all of my children had their "issues" :-) My "typical" kids were cranky in the morning as babies! Elizabeth wakes up happy every morning! She babbles and hollers DA DA! from her crib (assuming DA DA hasn't already put her in our bed at some point!), My older kids got tired and fussed about their naps. Elizabeth just lays her head down and goes to sleep. On your shoulder, in her high chair, in her bouncy...haha. I guess what I'm trying to say is, had your noah been "typical" you would have had worries and issues and tantrums! Trust me. Because Noah may not be typical, you'll have different worries and issues and such. Not necessarily worse, just different. Elizabeth is the light of our home and none of us would trade her for the world! Trust me, we've had offers! heehee. Please take heart. Enjoy your baby. He's your baby first, who may just happen to have DS. Sheryl
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Post by lorraine on Feb 15, 2008 9:30:59 GMT -5
Hi there Jessika Congratulations on the birth of Noah and welcome to Uno mas. Wow I've just been reading through all the replies you have got, there is a lot of wisdom written here, I'm not great with words but I wanted to say that we have all been where you are now, for me it was just over a year ago when my 3rd child William was born. I wish that I could go back in time and tell myself that everything would be ok and we would be so incredibly in love with William that the DS doesn't matter. but that is something you have to find out for yourself as you bond with your new baby. My partner is not great at talking about the DS either, which can be frustrating sometimes grrrrrr I have written a lot more than I was going too sorry LOL Here is William at about 8 months, sitting on his own, which is something I couldn't imagine when he was born Take care Lorraine
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Post by Renee' on Feb 15, 2008 10:25:50 GMT -5
CONGRATULATIONS on your baby boy!!
I have a daughter, Lauren and she is 9. I found out when I was 22 weeks along that she would be born with Down Syndrome. Like you I went through the process of mourning the baby I thought I was going to have. Then my husband came to me and said this is our baby. We will love it and treat it the same as we would any child. When Lauren was born it was instant love. She had a light about her that would take you in and never let you go. My entire family fell in love with her. She was our peanut. When we brought her home we started early intervention. She was rolling over at 5 weeks. By the year mark she learned over 70 signs. She walked at 15 months and she started to talk at 2. Each milestone she would reach was a celebration. Today she is in 3rd grade. She can communicate with us. She is learning the piano and can already play 3 songs. She writes, reads and loves music and art.
My advice is treat Noah like you would other children. He will bring you much joy.
Welcome to Uno Mas!! Renee'
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Post by Connie on Feb 15, 2008 10:38:05 GMT -5
Jessika, Your feelings and fears are not out of the ordinary and you have a right to morn what you have lost. You have lost "your" dream but now God will give you another one...not any worse or better just different. Whether we want to admit it or not we all have been there to one degree or another. My 3rd child was born with DS. I did not know "medically" he had DS until after he was born but I sensed something was not right while pregnant with him. The moment they laid him on my chest I knew and all my answers to why this pregnancy felt so different were answered. I too was terrified. I was scared about what it was going to do to our family, my other children, and if he was going to live. I was selfish and deep inside worried about what others would think...if they would accept him and me (I think this is the first time I've admitted that part in writing). I wondered about what I had done to deserve this and if it was something I had done that caused it. I blamed myself. Was I the reason my child was suffering or going to suffer?
While I did love him unconditionally I was scared to do this. I was scared to get to close for fear of loosing him. To hurt even more than what I was at that moment. But, I soon got over that!!! With a new baby and 2 other little ones had home I just didn't have time for it. As time goes on the moments I morn get fewer and farther apart. They say time heals and it really does. Collin now 8 is a loved unconditionally by one and all...our family and community. He has a very full life. He is in all day Kindergarten, he wrestles in our schools program, he just wrote out all of his Valentine's Day cards to all 20 of his classmates by himself (heck there are typical kids in his class that couldn't do that). While Collin does have challenges so do my other kids...they are just different. While I still have worries about Collin they are different worries than what I have with my other kids. With Collin I don't think I will have to worry about him being out late and getting in trouble, drinking, and doing other dumb teenage things. What this rambling post is trying to say is WELCOME and CONGRATULATIONS!!! Your not alone!!! The water is fine so come on in and join us!!! Connie
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Post by jelanismom on Feb 15, 2008 11:54:43 GMT -5
Hi Jessika, Welcome! I'm Dawn and my son is Jelani (5) and we live in southbay, Cali...Hi Neighbor! I want to express to you how much I understand your feelings, (and I may be repeating others here, but haven't read the entire thread)... I too was in your shoes and let me just say, there is not one feeling you have now that is wrong or unjustified...EXCEPT when you say "Noah will not"...please get this out of your mind...because "Noah WILL"...in his due time like any other child, but with your awesome love, and the support and knowledge you seek out, and with God's hand. Everything you are feeling now is NORMAL and all a part of the learning process (sorry, had to say it ) and we've ALL been there. Enjoy him now as these years go by so fast! It'll not be an easy road, but raising ANY child ISN'T, (as I've learned myself with Jelani being my first and only)...so just rid your mind of negative thoughts, you are going to need that positive energy to transfer to Noah, as you're his strongest advocate (another word you'll be hearing ALOT of ) and you can't be in a better place here at UnoMas...I wish I had been here sooner...but I wasn't on-line till Jelani was 3~!!! You'll find alot of useful info about Down syndrome reading through the vast amount of info here and also getting a hold of some great books at www.woodbinehouse.comand keeping a diary of his first little milestones (you'll often need to refer back to them) and have a notebook, if you don't already with separate tabs for his medical authorizations, all the important papers you'll be receiving, his immunizations, his insurance stuff,...SSI (1-800-772-1213) and get into your local Regional Center (sure you are already) and go to a couple of their Down syndrome support groups and meet other parents...I actually did go a couple times and met a wonderful lady and her husband w/their child my son's age and that was 5 years ago...we now keep in touch alot and attend Ds conferences and playdates together ... So now that I've totally overwhelmed you and anyone else reading, LOL ...let me just end this reply... already! ;D Here's a letter I STOLE from anothr Ds board that is inspiring and no matter a person's religious affiliation it's a beautiful thing to read: www.downsyn.com/bombeck.htmlTake care and see you here again...thanks for reading my book to you ;D Come back again and again as these ladies here (and men) have a wealth of knowledge that you won't find in any book! Have fun with your baby and congrats, I miss those days myself and I have tons of photoalbums of him that have taken over my bookshelf!!!! Welcome again Jessika! And would love to see a pic of Noah! D~
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Post by ALLISA on Feb 16, 2008 7:39:16 GMT -5
HI Jessika ! Well, I'm late in jumping in....but welcome and congratulations !! I skimmed the others posts......and I'd say I agree with all of them !! LOL Everyone here totally understands your feelings and we all had the same ones ! How you go forward day to day varies with all of us and will vary with you. Like Laura said, I was reluctant to talk to moms of older kids.....I wasn't ready to put a lable on MYSELF yet....I didn't want to be one of "those" moms, one of "those"families.....I wanted my perfect baby girl that I had waited 8 years for ! I cried whenever I talked to someone on the phone and I cried and faltered when someone who didn't know called to say congratulations. Erin had a heart defect as well as her DS Diagnosis, so that actually made it easier for us to "deal" with our news. We were so concerned for her health ( she would need surgery by 3 months of age) and so worried about heart issues and all the doctors seemed unconcerned with her DS status that we quickly learned Ds is NOT the worse thing that can happen....but .....it isn't the best either, so give yourself time to adjust. Did no one post this yet ? My fave...... WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. www.our-kids.org/Archives/Holland.html
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Post by sandi on Feb 16, 2008 13:29:11 GMT -5
Hi Sheryl,,,,, wow, reading your post sounded just like me... unreal. My daughter Cassie is 10 months old, so it was nice to see what your little girl is doing at 11 months old.
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Post by steffipoo on Feb 16, 2008 13:41:38 GMT -5
Dear Jessika, I like the way u spell ur name. My name is Stephanie and I live in Playa Del Rey California. Right by LAX.... Anyways congrats on the birth of Noah. Now don't get me wrong here but when ppl told me congrats when I gave birth to Olivia it kinda miffed me. lol.. I too was very depressed and man sad as all get out. Can't even describe what I was feeling cause it was waaaaaaay too powerful. I kept reading books and looking up milestones for kids with ds as compared to typical kids. Talk about even more depressing to a new scared as all get out mom. I kept looking ahead it was only when I was about 4 and a half months after her birth that I started living in the now. Started going to ds support grp meeting meeting other parents. really helped me a lot. I stopped looking ahead and started living in the moment. Plus Liv started to get such a cool personality about 5 months so it became much easier with a cute chubby baby grinning from ear to ear. Her brother is 14 months older and he was a gr8 help. She adores him to this day. I am going to upload a video on utube today and I will share my girl with you. K? You'll really get a kick outta her spunky personality and really good speech. I hope your okay if u can get my e-mail off here then please e-mail me if ever you need an ear K??? (((HUGS))) Steff
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Post by twosomy21 on Feb 16, 2008 14:01:09 GMT -5
these feelings are normal with any child ,concerns who they will be when they grow? with your little guy its magnafied but your off to a good start(reading these stories) and you will find that one day you'll be giving advice to someone .enjoy your baby and all i can say is keep close with dr's on health issues( if any) and love him
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Post by Renee' on Feb 16, 2008 17:12:18 GMT -5
Steff I think you sound a lot like me. It was strange for me but we attended a group in Orange County where all the families had newborns or young children with DS. At first it scared me more. I think the not knowing how she would look or what she could do as she grew got to me. I read every book I could before Lauren was here. I didn't enjoy my pregnancy because I was so worried about what was to come. In a way I always envied those who didn't know before hand. Looking back I wish I would have relaxed and enjoyed things more. I came here and noticed all the photos of the beautiful babies and children. The best thing is Lauren looks so much like her daddy. Time has gone by so fast.
Enjoy your baby. Don't let the news get to you where you don't live in the moment because before you know it they are gone.
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