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Who were you then...who are you now?


 
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ME's mom
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PostPosted: June 17 2008, 12:46 AM    Post subject:
Who were you then...who are you now?
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It is funny, I think back to life pre ME, and so much comes my way. I have watched so many people come on this board. I don't always post when you come on, but I read and I PRAY! I pray often, and I pray hard. I see your journey and I feel your journey. Often I see pain when you first come here. Why me? Can I do this? What about my other children? And then, time takes over, and I see joy!! I see empowerment!! I see grace!! It is an amazing journey. Some days, I think, who was I before ME? Was I as compassionate? Would I have been one who "got it", or one who did not? Did I fear this? Or was I open to what ever came my way, knowing that God had this planned for all of time, for His plans.

This is our journey. This is the plan. We can not take it back. So, how has this journey in your life, helped you to grow? Who were you then, and who are you now? How has your child helped you to become who you need to be?

In answer to my own question....I was not very strong before ME. In fact most would say, that I could be walked on. For better or for worse. After her birth, I slowly grew into someone who stood for what she believed in, and learned to stand up for the underdog. I am not even close to being the same person I was before she was born. Are you? Just curious.


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Ibby
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PostPosted: June 17 2008, 1:52 AM    Post subject:
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Diane,

What a great thread idea!! With AJ's birthday this weekend, I have been contemplating this very thought. I am very changed since AJ joined our lives....and definitely for the better. I remember before AJ, I was so uncomfortable around anyone with a disability. I know I always tried to be kind, but had no idea how relate on a real level. It was somehow easier just to avoid these people. Now, like many others here, I've become a disability stalker! I LOVE to talk to these families! I LOVE to hear their stories and make a fuss over their special children! I have even started a new job working with these families!! The former me could never have done this!

When I first joined Downsyn, I had such admiration for the members who had found joy in their lives! It gave me complete confidence that I would find this joy as well. Downsyn gave me the gift of hope!! I truly believe that helping another find hope in their lives when previously there was none, is one of the finest gift we can give to another person. The friends that I have found here are truly some of the finest people on this earth, and I feel truly blessed to have them in my life!

Truth be told, before AJ I was someone who was secretly proud and felt superior that in our huge extended family (12 siblings in my family; 88 first cousins, etc...) we had no members with any disabilities. Now, I am so thankful to the Lord for squashing that pride and replacing it with a newfound love in my heart and a new definition of beauty. Having AJ has taught me to finally love unconditionally. AJ's presence in our family has changed all of our hearts. He has made us all better people and I firmly believe we all have a much better chance of getting to heaven because of him!

When we first received AJ's diagnosis, I felt sorry for myself. But now I truly feel badly for those who will never experience this new extraordinary love.

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Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

http://www.onetruemedia.com/shared?p=26012b09b29bd00fe629cb&skin_id=0&utm_source=otm&utm_medium=text_url


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kittycat3376
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PostPosted: June 17 2008, 1:59 AM    Post subject:
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For this topic, I have to quote myself, in a recent response to a post by Tom

Quote:
Once upon a time I was one of "them". My cousin Destini and I weren't very close, but after her daughter was born with severe CP and was given a life expectancy of 6 months to a year we drifted even further apart. I didn't know what to say, wanted to help but didn't know how.

Then, two and a half years ago, I found out that my unborn child would have Down Syndrome. The first person I turned to, the only person who I KNEW would understand was, of course, the same cousin who I hadn't had much contact with for years.

Now, we have a closer relationship than we've had since we were 12 years old. If her little girl (who is still here, against all odds, at 9 years old), or my son, have any medical setbacks the first shoulders we cry on are each other's. I help her with the research side of things, in which area she gets easily lost and confused, while she is able to calm me and provide the voice of experience that no one else can (at least no one I can talk to face-to-face, no offense guys).

Every once in a while, I start missing one of my old friends, and wonder what they've been up to. I'll call them up and we'll chit-chat, maybe even get together for a cup of coffee. But it's always just surface stuff, and I'm always the one to make the call. Do they think about me? Miss me? Wonder what I've been doing?...Probably, but they just don't know what to say. Just like me until a short time ago.

Someday, maybe one of my old friends will come running to me when it seems their life is torn apart by tragedy, just like I did to Destini. Someday, maybe I will be able to "pay it forward", and show that friend that their tragedy is truly a blessing in disguise, just like Destini did for me.


To expand on the story, Destini and I were very close until we were 12 years old because we were only 6 months apart in age and all of our other siblings and cousins were at least 5 to 8 years younger than us.

Then Destini and her family moved to Pittsburgh, PA, and we began to drift apart. Back in the 80s when nobody owned a cell phone, and cross-country friends and relatives couldn't afford to stay close for very long.

She moved back here when I was 19 and she was 18, 4 years before her disabled daughter was born. I moved to Northern California with my ex-husband in 1997 and moved back here in 1999, shortly before Dakoda was born.

If Destini and I had been together through our teenage years, or had that extra 2 years to reconnect, then things might have progressed a bit differently. As things are, I know how hard it is to be on both sides of having a disabled child/knowing someone who has had a disabled child. Having been on the other side makes it easier, most of the time, to forgive the ignorance of others, and to recognize ignorance as opposed to just plain stupidity.
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lilyzmom
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PostPosted: June 17 2008, 6:31 AM    Post subject:
Lily
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I am such a different person and still continue to change and grow since Lily came into our lives. I was definitely not open to having something or someone like this in my life before Lily. I was too proud and felt invinsible that something like this could ever happen to me. I was also very uncomfortable around people with disabilities and honestly still am a little. Mainly because of the unknown of Lily's future I think.I am not really ashamed of who I was because I knew no other way. Lily had to come into my life to be my greatest teacher. However, I feel a new compassion and have a greater respect and understanding for those who are special. Lily has taught me about acceptance and unconditional love. At first I didn't think I could accept her and love her unconditionally because I thought I would always see what was wrong with her instead of what is right about her. Everything is right about her! Her bright eyes, her big smile, her strong will, her sweet disposition, even her little temper that comes out sometimes, even her little crease across her palm, even her little ears and nose and her slighltly slanted eyes...these are all the things that make her...her! She is perfect to me.

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kwisteena1021
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PostPosted: June 17 2008, 6:45 AM    Post subject:
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What a great question Diane! Before Kallie me and Todd were working our way into careers. I was going to college to become a Physical Therapy Assitant with no hopes of having children. They were cute, but we both just agreed we didn't want any(please don't think badly of me!) After a year of marriage I started getting little urges. It was so weird to me, but I would suddenly be having a conversation with Todd that I wanted a baby. It only took once, God truly knew that we weren't goin to try hard to get pregnant, so my thought is He just made it happen quickly! LOL My pregnancy and birth experience changed everything about me. I was no longer living for myself and my selfish desires but I had this precious baby, that I fought to keep, that I had to defend her life even before she was here(they thought she had spina bifida or hydrocephalus, but I wouldn't do an amnio to confirm or deny), that I tried to get off the operating table to get to when I heard a nurse say "You heard Down's right?", that I fell immediately in love with not just the first time I saw her beautiful face, but that I fell in love with the first time I felt her move. Kallie, has changed me. For the better, life isn't about me anymore, its about her. About protecting those who need protecting, loving those who deserve to be loved, that society doesn't see worthy. Because of Kallie, I see worth where no one else can.

Ugh, now I need a tissue!

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erinsmom
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PostPosted: June 17 2008, 7:28 AM    Post subject:
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ME's mom
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PostPosted: June 17 2008, 8:34 AM    Post subject:
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kwisteena1021 wrote:


Ugh, now I need a tissue!


Me too! I literally felt myself welling up as I was reading them! I love what our kids bring to us! Through it all, the hard and the joyful, God uses it all so beautifully. It is truly amazing! I love you ladies! I am always so inspired by you all! Love, Di
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Nasher
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PostPosted: June 17 2008, 9:35 AM    Post subject:
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wow, such a great question....DH and I were talking about this very thing last night!!!

prideful we were, almost boastful...we came from rough beginnings and worked very hard to become what we are...but were we happy, no...did we always think of the next step, the bigger whatever...never lived in the now.

now we open our eyes and look at the WORLD around us, the love, the laughter, the music...and fall in love with our boys every day....

I love being present in the present...and we are pretty damn happy about it!!!!!!

...although I still want my beach house and mountain cabin Laughing Laughing Laughing

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LarkinsMom
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PostPosted: June 17 2008, 9:48 AM    Post subject:
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I wrote about this a while ago on my blog but I can't get the archive to link correctly: March 2008 - Titled

Hands down we have a leader


October 4th 2005 Larkin Murphy Armstrong was born and the person I was, died. Becoming a parent is, in most situations, a beautiful process. Chase Larkin was born August 29, 1995 and no longer would I be sleeping in, running out the door for a quick lunch, dinner or otherwise. Self-involvement goes away and this little being encompasses all thoughts, deeds, and actions. Loving Chase began the moment they told me I was pregnant. The intense, all consuming, heart shattering love began the moment they laid him on me seconds after his birth and I looked deep into the eyes of love and my soul and his melded. I always believed in God but now I KNEW Him. I began to know His plan. BEGAN - being the operative word.

Larkin’s birth was the same but different. Looking back the signs are all there. The pictures show the proof of her differences. The pictures also show proof of the sameness. Is that a word? All consuming-heart shattering-intense love. I looked deep into her eyes after her birth wanting that same connection that I had with Chase. She was ANGRY when she was born. She came out hand first. I have found over and over in my readings the old saying that children born hands first are leaders. After receiving the diagnosis of Trisomey 21, I questioned that old saying. After receiving further devastating news of Infantile Spasms, I threw that saying out the window. Then when the final crushing blow of Lennox-Gaustaut was delivered, I went outside, took gasoline with me, and burned the damn thing.

I also burned my “What to expect when you’re expecting,” “The Toddler year’s what to expect” and the poem “Welcome to Holland“. It was a good fire. I am sure the neighbors considered calling someone to take me away. Imagine fire blazing as a mother with gas can in hand, pissed, devastated, insane from grief and being so very helpless, mutters under her breath every single swear against the universe. We were supposed to protect this child and FIX it all.

I have always tried to take care of Chase’s world. Making sure he eats his veggies, brushes his teeth every 4th day and occasionally uses the soap and shampoo in the shower. Keeping him busy with his own activities, so he does not feel as if he lives in Larkin’s shadow. Chase has his own challenges of course. He is a deeply sensitive child and my girlfriend Laura points out regularly all children have special needs. My child of 10 whose response to being told that his sister had Down syndrome was “why couldn’t it have been me instead of her?” This morning there was a picture and article in our local paper. Team Larkin was shown from the 2007 polar plunge. I have taken the plunge for the past 10 years. It became a Team Larkin movement 3 years ago. It was during the plunge last year that I heard ”the Voice” and understood what He expected of me. She IS a leader. She is showing us the path to enlightenment. Leading us to acceptance. Leading us to playing. Leading us to growth. I now have to believe those who say the hands first births are leaders.

Our little girl deserves so much more then she has been handed physically but spiritually giants hold her up. Giants made of material that is indestructible and unmovable. It was a wonderful birth and an even more wonderful death. I do not miss the person I was and cannot wait to see what this little one brings to the rest of my life.

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Momologist (tm) to Chase 8/29/95, Larkin 10/4/05 (DS, IS, LGS), Brin & Erin twin girls 11/17/09.
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Ibby
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PostPosted: June 17 2008, 10:09 AM    Post subject:
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Amy! Huge tissue warning needed on yours!! It is just beautiful!!

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Ibby
Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

http://www.onetruemedia.com/shared?p=26012b09b29bd00fe629cb&skin_id=0&utm_source=otm&utm_medium=text_url


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mom2Anthony&8girls
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PostPosted: June 17 2008, 11:35 AM    Post subject:
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I asked my husband to please watch the children so I could post to this one.

All my pregnancies were difficult with lots of pre-term that required me to stay in the hospital for long periods of time, even being air lifted to Seattle. Many of our babies spent lots of time in NICU and a couple airlifted to Seattle too. SO, when I became pregnant with Anthony the big question was whether or not I would carry this baby to term? Long story short, by the time I was 7 months and no preterm we were celebrating, but more so because we were having a BOY!! After 7 girls a boy!

On April 25th 5 weeks early Anthony entered the world a healthy screaming baby. He needed some air for the first 2 days, but was transfered out of NICU as he was awesome. We were sent home to start our lives with our only son.

On April 28th our world became dark and cold. Anthony's arota was 90% closed off and his organs were shutting down. Heart surgery saved his life on April 29th. We celebrated his recovery. 10 days post op we celebrated as we got the word he was being moved to peds.

The same day of the big move our ped Dr. hit us with a blow! Anthony has Ds! How, why and how come we are just being told this?!?! Anthony had no markings for Ds except for a little extra skin on his neck. I wanted to go away from the world I was in, I wanted the nightmare rollercoaster to stop and let me off. My dreams for my only son were gone, I will not dance with my only son at his wedding, I will not watch my little boy grow into a strong man and hold me, my only son will never have his own children.

Once home our family helped us so much. My children said to me "He lived through heart surgery, so what about the Ds", "mom you have always questioned who is normal" " We will give more and teach him more then we planned".

LOL.... yes, we have done all that and continue to, but what Anthony has taught us and many others was never on the radar when we where searching for what we could give Anthony. We have a strong family and thought we were doing all we should.

I as a mom have far more patience, understanding and compassion. As a person, I have all those things, but I reach out to others with an open heart and a gentle hand. I am very comfortable with all different types of persons. Anthony has taught me to always smile and offer a "Hello" to all people I pass. I have become a person I thought I was before Anthony.

Today, I have dreams for my only son, he will grow to be a strong man and hold me (he already tries) my son will never have his own children but his unconditional love will be shared with all children, my son will dance with his mom at his sisters weddings if not his own. While on his journey, standing beside him will be a large family supporting him, cheering for him and loving him all the way and as we do so, I (we) will be learning more, giving more to all we meet and taking openly the love of many.

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Helen ~ Wife of 22 yrs. to Don
Proud mom of Kiersten~18, Alexandria~16, Hi-Jen~ 15 (exchange student from S. Korea), Katrina~14, Ashley~12, Virginia~9, Corrin~8, Vanessa~6, Anthony~5 blessed with an extra chromosome, Rachel~18 months




See my interview & pic of Anthony when he was 3 yrs. at www.guildschool.org
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elizasmom
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PostPosted: June 17 2008, 12:53 PM    Post subject:
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Everyone has such beautiful responses. Tissues needed for sure. I know i am a better parent now. More patient, less competative. I hope i am a better friend. I like how Ibby says she's a disability stalker. I now gravitate towards those who move a little slower, speak less clearly, whom the world sometimes ignores. Not just people with Ds, but handicapped, elderly, homeless, etc. I guess i am aware of sort of slowing down and noticing each indivual now and their own unique gifts. Eliza has also taught me to really live one day at a time. There will be bad days, but life is a rollar coaster so you need to be aware that there will be incredibly good days too and to bask in the moment! I guess i used to be much more of a pessimist and now i am more an optimist. Eliza gives me a more optimistic view of humankind. Because of her i have seen miracles and met incredible families and indiiduals from all walks of life.

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Helen
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PostPosted: June 17 2008, 3:00 PM    Post subject:
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I guess I will reply with what I said in my thread 'My Boy' but add a little more...

I'd worked with kids with disabilities from about 15yrs old, and grew up living next door to a lad my age who had severe learning difficulties. I always gravitated towards children who were a bit 'different'. When I met my now-husband, I told him I wouldn't go out with him if he wouldn't consider adopting a child with DS in the future. So I guess, having Matt, for me, although it was a shock and a disappointment (as I 'knew' all along he would be my only son), it was kind of expected. I just never expected it to be my birth-son who'd have DS!

I always embraced Matt with DS as a gift. But to be honest I really think I became more proud as a result. I know that sounds strange, but Matt excelled at everything. He sat early, he walked early, he signed early and had a huge vocabulary for a child his age. He was really sociable, he gave kisses and hugs to everyone. Whenever he had a review, his skills in both his social and his cognitive development were above his age compared to typical kids. When he was tested for his IQ, it was in the 'average' range. And I was proud. In fact I was really proud and wanted to show him off at every opportunity. Yes it's Ok to be proud of our kids, but not to the extent I was.

So when Autism came into the picture and took away so many of his skills, I really struggled - for many, many reasons. When he lost his last sign, and his last spoken word it was so hard. In some ways I became embarrassed about him. But I also desperately missed him. I struggled so much more to accept Matt with Autism! I wanted my child back. I wanted my clever little boy back. I wanted my sociable, loving little boy back. And it's taken 2 years for me to come to terms with it - or, at least, to get to the point at which I find myself now.

Over that time, I've changed so much. When Matt was born we chose his name because it meant 'Gift from God'. But I really struggled to embrace and want that gift when Autism took over. However, I now accept and embrace Matt as a gift. And (as long as I'm not too tired when I'm asked!) I can say he's a good gift! And especially as he's a gift from God - how can I argue with God about whether his gifts are good!!! I'm still proud of my boy's achievements, and these are so much more special now.

Having Matt with Autism has humbled me, and helped me to see that God has given me Matt to teach me to serve. Matt is no longer that high flyer. The odds are really stacked against him. But in loving my son, I am able to love God so much more profoundly. In loving Matt, I am learning to serve. And that is a wonderful thing

I guess my heart has softened and been humbled. I am much more willing to give, and to understand. That's about it.

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Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!





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Reylah
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PostPosted: June 17 2008, 9:11 PM    Post subject:
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Mike and I talked about this the other night while sitting on the porch in our rockers. I'm not sure my family even knows all these things.....

History: Mike was raised Roman Catholic, but stopped going to church as a teen. He was agnostic for years, and although we were married in the church, he remained agnostic.

It was July 2004, and I was late. HOW was that possible?! I was on the pill - we did N O T want children. I was not giving up the ability to go to the shore, go hear a band, or stay up until 5 am playing video games for a baby. Why anyone would want to be sleep deprived and tied to a child 24/7 was beyond me. Sure, I was (and still am) a teacher, but I did not want to come home to a crying, needy, helpless infant who would grow into a car pool needing defiant, smart mouthed teen.

And there were 2 lines on the test. And I was in shock.

My mom said maybe it was early menopause, but then we saw the heartbeat, and I was terrified. I could not and would not be "mom" - it was just so not me. Mike didn't want kids either, so we weighed our choices. My sister talked to me a lot, and after a few weeks, we grudgingly accepted the fact we were going to be parents. To a little girl. Who would be musical and have a 140 IQ.

Funny how you tell G-d what you want, isn't it? SO we found out it was a boy, and I almost cried on table. At least that was easier to get used to than the shock of being pregnant.

The day of the birth was magical. I remember holding Dillon for the first time - he was GORGEOUS! Mike and I were thrilled....until the doctor came in and said "we think he has Down Syndrome". I thought my world had ended. I wanted to end it, there was no way I could do this. I held out hope that there was a 20% chance that he did NOT have DS.....and they were dashed a week later.

As time went on, I began to accept DS and being a mother. I didn't miss much sleep, and DIllon was an easy baby. I didn't mind feeding him OR chaning him (suprisingly Mike didn't either! and he had never changed a diaper before!) Dillon's personality began to show itself, and he was (and is) a lot like me. We stopped staying up late, and didn't mind. We had baby stuff all over, but didn't care. We took Dillon everywhere, and just loved when people noticed him.

Then the strangest thing of all happened. Mike bought a bible. Yes, a bible. I asked him what he wanted it for, why would he want a bible?? Why did it have to be an edition with comments on the side? I was in disbelief, but it was true. He wanted a bible.

He refound Christ. He has read the New Testament 2-3 times, and continues to search for "just the right church". We strongly believe that DIllon wasn sent to fix and heal us - and he has. Our marriage is stronger than ever, and I believe we both have grown in ways formerly thought impossible. We don't talk about it often - honestly, his mother didn't know until last week that he was Christian - but he is, and it still boggles me sometimes.

As for not wanting kids? Well,yeah you all know I'm due in Oct! Dillon has widened our horizons, taught us patience and selflessness, and shown us what true joy and happiness is. Oh, and he helped bring Mike back to the fold. Not bad for a 3 year old kid with DS.

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Mommy to Dillon James(DJ) 3/15/05 Carter Joseph 10/3/08
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EliasMom
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PostPosted: June 17 2008, 9:26 PM    Post subject:
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I was a person who seem to be happy, a person who always talked about dreams, and following them but I didnt have my owns. I didnt treat people bad, but neither I treat them well. People with disabilities was not in my world, I knew few, but never thought about the possibility of having them in my daily life. I was always giving advices, but when it was about me, I always felt that they were the worst problems ever, I knew God only for what I learned at church, but didnt belive him enough

Knowing I was pregnant, was a huge deal, not being married, in a catholic family, was hard enough, but I didnt believe on abortion, and I knew inside of me was growing a new little person, I didnt have much expectations only to be a SAHM

I didnt knew why God sent me Elias, and neither I asked why.... but he made sure to let me know why, and he also made sure to give me the strenght, and to tell me about his promises

Elias' life mostly changed me in my faith, I not only know God, I believe in him.

Elias' life opened my eyes to God's sight.

Elias' life gave me dreams

and God will still working on me through Elias

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Carson's Mom
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PostPosted: June 17 2008, 9:42 PM    Post subject:
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Having Carson in our lives has changed my heart in ways I never knew it needed to change. I was probably one of those people that never wanted to make anyone feel badly and would never have been ugly on purpose- but, I was probably one of the ones that had the pity in the eyes that I loath now. I learned to love at a different level than I ever thought possible.

I remember thinking that our life was over - we would never be "normal", but that is so far from the truth. I have been through several different things in my life that I know God has let me go through so that I can help others by sharing my experiences. I really think that Carson is another one of those opportunities. When I found out about the DS, my pediatrician put me in touch with someone that was still crying about it with a 4 year old and relishing in the fact that her child had "special needs." I pretty much wanted to slit my wrists after our first phone call and knew I could never live in that manner. I think that today I have a lot more realization of what is important in life and I believe that I have been able to help others keep on living as well. I would never have been able to talk to someone finding out her child had DS- I would never have been able to think of something to say.

Today Callan asked me if I ever forgot that Carson had DS- because she does. I had to admit that other than coming on here, on the DS board - I really never even think about it- all that time I wondered if we would be "normal", and I can't imagine what life would be like any differently- life is just good. I know if I had been told this prior to Carson I would never have believed it to be possible.

Kayla

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violettesmom
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PostPosted: June 18 2008, 6:52 AM    Post subject:
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I'm a person who believes that there is a plan, and that there are reasons for everything in life, but you don't always see them when you are going through them.

I've always been drawn to the most interesting people in the room - not the most typical - the ones I consider most interesting. I dated a guy for 7 years who is still my best friend. We broke up when he realized he was gay. At the time it broke my heart. But guess what? He grew up with two foster brothers (and actually a foster sister) who had Down syndrome. A voice (I believe it was God) told me when he told me what was going on with his life that I loved this person and my life would not be right if I hated him because he was gay, and if that was a part of him, I should continue to love him. Honestly, I think people thought I was nuts for that - he was my ex-boyfriend for goodness sake and he wanted to date boys - I should HATE him, not love him. But I went with my heart and swallowed my pride. I'm glad to this day.

I have a nephew with Muscular Dystrophy. My cousin's little girl has DiGeorge syndrome. I have a friend with a little boy with William's syndrome. I have a friend whose child had neuroblastoma (cancer of the stomach discovered at 8 months old.) A neighbor has a child with CP, and another has a little boy who is autistic. Disabillity is, if you can imagine, "normal" in our lives.

But, when I got the odds that Violette had a 1 in 16 chance of DS, I was shocked. I thought it would be the worst thing in the world. I had always considered myself the luckiest, most blessed person I knew. For about 3 weeks after she was born I questioned that.

But I went back to my favorite four words of the Lord's Prayer "thy will be done" and realized that a person as lucky as I was, as blessed in this world as anyone I've ever met, wouldn't be let down. And I started to think about things.

Every day, more and more I realize that Violette being that 1 in 16 was just another way of God telling me how much he loves me. And I know that having "the 1" is indeed the lucky one - not those other 15 who don't have someone like her in her life.

I can't say that she has changed me - I'm still fundamentally the same person as I was before I had her. I can say, though that she's totally reinforced what I thought before I had her - I am the luckiest person in the world.

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PostPosted: June 18 2008, 10:59 PM    Post subject:
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Okay, I just have to say, had I known these responses would have been so amazing like this, I would have put a tissue warning. You all inspire me more than words can say. I have to say, our kids teach us one thing that I see in all of these posts, unconditional love!! God is good. Thank you sharing. God bless you all, and of course, you know He has, Di
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PostPosted: June 19 2008, 6:46 AM    Post subject:
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I grew up in a family where independence in all things was stressed. There were 8 kids in the family and my dad was a judge who, though well respected, was not well paid. If we wanted to go to college, we had to earn the money and pay for it ourselves. My father wouldn't even let us apply for financial aid because he said that the government was for people who really needed it, not people who could earn it themselves. So all through high school, college and law school I worked and worked and worked to pay my tuition and living expenses. Once while in law school and living away from home I ran out of money three weeks before the end of the school year and subsisted for the rest of the year on canned green beans (which I hated) that my mother had given me months earlier. Green beans for 3 weeks--never have I touched them since.

Time passed, infertility occurred and we adopted our two beautiful older kids. Our families lived far away so we never had family assistance, but that was ok because we could afford to hire help. We were shocked, amazed and flabbergasted to find ourselves pregnant with Anna ("they" said it wasn't medically possible).

Until that time I don't think I had ever asked a friend or family member for help. I offered to car pool, but never asked anyone to drive my kids. I volunteered at school, was involved in various charities, etc. so I gave to others but never, never, NEVER asked anyone else for help.

When Anna came along and we got her tentative diagnosis within an hour of her birth I thought this was just something I would have to manage on my own. We let our friends and family know immediately about our unexpected setback but didn't ask for assistance nor did we expect it.

After a week in the NICU, Anna came home on a Thursday, the week before Christmas. Apparently every one in town was talking about it at cocktail parties around town that Friday night. Saturday morning rolls around and all the sudden our doorbell begins to ring. We apparently wer hosting an open house to which we had not issued any invitations. Every ten minutes from 10 a.m. until 8 p.m. that night, the doorbell would ring and wellwishers would appear, all bearing gifts to welcome Anna. There were baby gifts, food, candy, presents for Libby and Alex. The people that came weren't all our best friends either--some were people we hardly knew--they were parents of our big kid's friends, teachers, neighbors, a lot of teenagers with offers to babysit, etc., etc. They let us know we were not alone. For months afterward, every day at 5 p.m. the doorbell would ring and a hot homemade meal would be there for us for dinner.

Since then, we have been actively involved in raising funds for DS research and these same friends and family have come through year after year. I no longer feel I can't ask for help--people actually like to help. And Anna, in her 4 and a half years, has channeled that help to about a half million dollar in research funds. So I guess you can say I've gotten over that feeling that you can't ask for help--I now ask for it every year for the Romp for Research.

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PostPosted: June 22 2008, 11:41 PM    Post subject:
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Good therapy question for me Diane!

I think I can better answer this question when Joe and I are in our “pill popping” days as elderly folks with our life nearly behind us reflecting back on what was our life.
But to answer the question from this passage of time I would have to say that this experience has not changed me, but, I would have to say that I have learned a lot about life.

I was the mother having to listen to a doctor tell her that her child has down syndrome
In the early days I would leave my house to see my therapist and escape in the middle of the night to a casino to run away from the pain.
I questioned the firm foundation of faith introduced to me by my parents in my childhood.
I believed in God but I came to the conclusion that he doesn’t really like me very much.
I was introduced to a number of specialists I didn’t even know existed – Ophthalmologists – Cardiologists – Speech Language Pathologists – Occupational therapists and physiotherapists
I learned that it is more important to be respected than it is to please everyone and wanting to be liked by everyone.
I see myself with clarity – the ugly and the beauty within my soul
I’m kept grounded and authentic
I understand what courage is
I realize that anything can happen to me – good or bad
I realize that things rarely turn out exactly like I planned them
I understand the meaning of life
I learned that I have to make the most of what I have been given
I lost my sense of invincibility and appreciate my life as something priceless
But through it all I have gained courage and strength to look pain in the face and not turn away
I learned to love my little boy for who he is and accept rejection with my chin up.

I have learned most of all that dreams get shattered and new ones are made.
But most of all I learned to love me.

Affectionately

Antonette

Michael 5 ½
Joseph 2 ½ DS

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PostPosted: June 23 2008, 8:05 AM    Post subject:
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Great thread!

Before Julia I was corporate mom. I loved my fast paced job and my fast paced daughter. I had Sofie in the top of the line daycare and worked 12 hr days. I had lots of balls in the air at all times and was a great juggler. Julia was supposed to just join right in without incident and I would return to my job when she was 12 weeks old. I never had any intention of being a SAHM much less did I ever think I was capable of handling a child who had more than the everyday cold.

Julia Katherine was born at 10:29am on May 4, 2007 and my life did a 180 degree turn. We heard Down Syndrome and then 15 minutes later we heard "major heart defects and open heart surgery" and suddenly the DS seemed minor. I didn't get to see her until she was 8 hours old and the first time I saw her I didn't see the DS at all. Rob and I accepted it immediately and never looked back.

She spent her first 8 months in the hospital and underwent 4 open heart surgeries before she was 4 months old. On 3 nights the doctors put us in a tiny room and told us that she probably wouldn't live until morning. She fooled us all. She turned 1 a month ago and is thriving. She is the strongest person I have ever met and I am truly honored that I was chosen to be her mom.

My dad told me that Julia a gift to me because she showed me that life wasn't about schedules, rather it was about smiles and sunrises and he is absolutely right. During Sofie's first year I was so busy with everything else going on that I don't remember a lot of her milestones. Julia changed that part of me. I don't miss my fast paced high paying job. I spend a lot of my days in pajama pants rolling on the floor with 2 toddlers. Many nights Rob comes home and I have food in my hair. I cherish every single day with my kids because I know how quickly they can be taken away.

I like to say that Sofie made me a mom and Julia made me a great mom Very Happy

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PostPosted: June 24 2008, 6:28 PM    Post subject:
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You all never cease to amaze me. This thread is just so amazing!! You all are so amazing!!! Thank you from the bottom of my heart for sharing your experience. I have enjoyed reading each and every story. And yes, the hair on the back of my neck stood up for all of them, and tears welled up each and every single post I read. Thank you sooo much!
Love, Diane
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PostPosted: June 26 2008, 1:33 PM    Post subject:
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I just finished reading the rest of these post. Wow! Everyone's insights and experiences are so encouraging! I'm wondering.....do you think, moderators, that this thread should be made into a sticky? I would think that these post would be very comforting and offer a lot of support for newly diagnosed parents to read! What do you think?

Kris

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PostPosted: June 26 2008, 2:01 PM    Post subject:
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I was a crazy person then and I am a crazy person now. The only difference, I actually have a purpose now. LOL

It honestly seems like (as I look back now) that there was a huge sense of purpose missing with my life. A little bit of that went away when I had Elizabeth but there still seemed to be something missing. Now that we have Olivia, I realize that I needed to do more with my life. The people at the local DS center joke with me all the time about how glad they are that I had a child with DS because I am a maniac when it comes to promoting awareness, the center, and raising money. I honestly have no shame when it comes to trying to get what I want for my child and other children like her. They put me in charge of fundraising for our Buddy Walk and I am on a mission to get a ton of money. It feels great to have a feeling of fulfillment on a whole other level. I was always willing to do anything for loved ones, just not for strangers. Now, I want to help everyone.

The one thing I know I will eventually get to, but am not quite there yet, is less negativity and judgement of others.

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Elizabeth (1/4/06), Olivia (7/26/07) DS

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PostPosted: June 26 2008, 2:02 PM    Post subject:
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Well I'm a mod, and I think yes. I'll ask the other guys what they think ... and let you know.

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PostPosted: July 02 2008, 10:49 AM    Post subject:
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Great thread, this is my heart! This is what I am so excited about, what I want people to see, to know, to expereince!
I am in fact, a different person. My baby came bundled in love, joy, peace, gentleness...the fruits of the Spirit. And you cannot stay the same when you have been touched by God's messanger Smile
I believe I live those same qualities more than I used to, and I know I still have a long ways to go.
My life attitude has changed, my heart has changed. I see people different. All of a sudden I am more aware about what life is really about, what trully matters, what gives us worth. It is so cotrary of what our world teaches us, and here I stand, honore and priviledged to know the truth, all because of a little baby with Down syndrome.

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"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
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PostPosted: July 04 2008, 3:27 PM    Post subject:
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The doctors had some suspicions about Sammy before he was born, but nothing prepared me for June 7, 2001 when some doctor with all the warmth of Godzilla walked into my room where I was recovering and announced "Your baby has DS". It was as if my world crumbled. At that moment, I thought Sammy's world would be over in days.

I think I became a different person in that bed, that moment. I vowed I would do anything I could to help Sammy, since for some unfathomable reason, he was ours. As soon as I could move from the C-section, I waddled down to Social Services and got going on the paperwork for Medicaid, the early intervention program in my state, anything. I signed up for his nutrition to be delivered. When I wasn't visiting Sammy in the NICU, I was in Social.

I am such a momma bear now. I think before Sam, I was a little mousy and passive and just let beaurocracies walk all over me. I became quite the presence in the hospital, arranging his care and finding specialists. I demanded that he get hearing tests, and was proven right when they found a 40% loss. I have planted myself in a seat and refused to move until someone saw me, signed something, or paid attention. Yes, probably overboard, but sometimes it's called for.

I found I'm capable of far more than I thought. I didn't used to trust myself, and now I feel I could handle anything (though sometimes I still doubt...). Sammy himself has taught me about life, that life is for the small joys-a clean onesie, a full belly, a favorite Cooky Monster toy. That you can face anything after a warm bathy with your favorite tubby toys. I look at him with all his challenges, and he still laughs and giggles and loves to play. And then I think, what would I give to be more like him everyday?

Anne
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PostPosted: July 25 2008, 3:46 PM    Post subject:
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Before Cason...

I was a woman who yearned to become a mommy. It was all I thought about and it fully consumed me for the first 7 1/2 years of our marriage...and then, it finally happened.

I was oblivious to the simple joys in life. I lived full speed and didn't know how to appreciate the things that make us happiest in life, like ice cream, Mickey Mouse Clubhouse, Goldfish Crackers, and endless games of Candyland.

I thought I knew God and His power. Boy, was I waaaay off on that part.

I thought I knew what love was. I had been married for so long, surely I knew what it meant to love and be loved, right?



Since Cason...

I learned that being a mommy means sacrifice, heartache, unconditional love, pride in all accomplishments, and ultimate happiness. I wouldn't change a thing.

I learn to slow down now. I've been known to turn the car around, get out to open Cason's door and let him see a turtle crossing the street. I love looking at the moon with him because it amazes him so, and I have learned that tractors and road construction vehicles are magical to my little boy. I love that he has shown me how to appreciate so much more in life now.

When I finally got pregnant, I prayed for one healthy baby. One healthy baby was what I got. When I selfishly said, "Why couldn't I have had the perfect baby I was expecting? I waited so long for this, why does mine have Down syndrome?", God showed me that His plan was so much more than I could ever know. I'm still learning what Cason's purpose is here on earth and I can't wait to find out more!

I learned that my heart could grow more with love for my new little boy. You know how they say that the love you have for your spouse doesn't even compare to the love you have for your child? Well, they were right. Cason is my heart and soul--I adore every inch of his being and cannot imagine life without him!

I guess I could say that who I am now is a person who is passionate, compassionate, humble, spiritual, proud and loved.

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"We cannot fashion our children after our desires, we must have them and love them as God has given them to us." Johann Wolfgang von Goethe

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babystpierre
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PostPosted: August 07 2008, 1:24 PM    Post subject:
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Wow! All of these posts are just amazing!!! Tears are just streaming and I just wanted to say "Thank you for taking the time to tell me about your blessings". You are amazing, strong, wonderful moms and from very far away you still have encouraged me to be a better mom tomorrow than I was today.
Love and admiration to all of you for the paths you have walked.
~Lauri (and our little Gunnar at 4 years old)

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apensity
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PostPosted: September 11 2008, 1:51 AM    Post subject:
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So..., I'm not a Mom,... but I figure I was on here a year before my wife ever was so I can post my thoughts on this, right? Wink

It's funny when people tell me how hard it must be to have a child with special needs and they say that I must be a strong person and that they couldn't do it. There may be some truth to that (because I have seen parents with typical kids who do not spend time with them or give enough of themselves to their kids). However, I tell the people that when we had Mackenzie, she made me a better person. She changed my life and made me less selfish. Well, when we had Avery, it was just as drastic of a change. She made me a better person, much more patient, giving, open, loving, forgiving, and able to see people for who they truly are. She gave us a gift that nobody else could give us, and not many people can experience.
I never really had a hard time with Avery having Ds, and I think Kath had a hard time with me being like that. I just always felt that we would give her the world and we would spoil her and give her all we could in the way of love, experiences, travel, and education. This would benefit not only her, but the whole family as well. So instead of having the best of everything, our priorities changed and we are all better because of it. Avery will never truly know what she has brought to our family, but we know and we will always be thankful for that.

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PostPosted: November 10 2008, 6:57 PM    Post subject:
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I was a child who grew up in an extended family that had many members with disabilities and friends with disabilities. I was not "taught," but I learned, that people with disabilities are part of the fabric of humanity, valuable and happy individuals despite what others may think they see.

I was a teenager who learned the value of community service in volunteering.

I was a bright student who excelled in law school. There I learned to research, to write, to advocate, and to speak in front of an audience. I learned about the fallibility of the medical community. I learned to question, to probe, and never to accept things at face value.

I was a mother who knew the joys of parenting.

I was a mother who learned through first-hand experience about stress, rare medical conditions, and the imperfection of doctors. I was "put through the ringer" long before my child with Down syndrome.

I was a mother who saw my children squirming in the ultrasound screen, the same children who later nursed at my breast. I learned to appreciate this continuity of life.

I do not feel Gabriella has changed me. I feel like my life experiences all along have prepared me to be her mother.

When I received questionable blood results, I felt confident that "Everything will be OK. And if it isn't, it'll still be OK."

After receiving amnio results and fetal echo results, I plunged backwards. It all unraveled. How could that happen? But I inched my way back, and after awhile I was once again the person I was. A person who appreciates and respects diversity. An advocate. A skeptic. Someone who gives back. The person I was always meant to be: a mom of a little girl who is the person she was always meant to be.

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Maria (9)
Elena(7)
Gabriella (4) (DS & repaired AVSD)
Our story: GIFTS - page 130
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PostPosted: November 12 2008, 2:26 AM    Post subject:
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So many changes from the me before to the me after. Many of them are the very same as those you have all talked about....tolerance, acceptance, love, awareness, etc. But a few things stand out for me, above and beyond all that.
My mother and I were just getting to the point in our relationship where we were "friends"....being silly on shopping trips and genuinely enjoying each others company after the angst of the teenage years, when she started to develop Alzheimer's Disease. I lost her before I really got to know her like I wanted to. Those of you with moms will understand this. I mourned that loss greatly, but hoped that I would have that with my own daughter someday. When Kira was born, we were elated that we had a little girl, after two boys. Then, when we found out that she had DS, all the usual thoughts went through our minds; but I almost immediately thought of that sweet, adult-type mother/daughter relationship and just knew we would never have that. Never would we have "girls' shopping days" or giggle over a shared chocolate shake while telling jokes. Kira is 21 years old and, I'm VERY happy to say, I was wrong! We have, for several years now, enjoyed many girls days out, laughed at tons of jokes (her favorite is: knock knock, who's there, joke, joke who?, joke is so funny), and just generally been silly together. We have a lot of fun singing to the radio in the car on a simple ride to the post office! She keeps asking me if she's my best friend. Of course the answer is a resounding, "You better believe it!" Twenty-one years ago I never would have imagined that she would be so much fun. The stereotypes I'd heard didn't say anything about fun.
Another thing that stands out is the infinite wisdom of God. Often parents, myself included, say, "Why me?" when our child has problems. Two years ago, just as we were about to move to MS from Arkansas, I became gravely ill and nearly died. My husband was committed to the move because of his new job. Because of my situation, I had to stay in AR and the healthcare providers there. At home, I needed help for some of the simplest of daily activities. Our church helped out greatly, but nobody could be there with me 24/7. I was okay during the day, when Kira was at her day program, but in the evenings, I really needed help, and Kira really rose to the occassion. She did things, with grace, that I felt awful having to ask her to do. I knew she would be able to help me, but I never expected the high level of ability that she demonstrated. Basically, she blew everyone away with both her abilities and her graciousness in doing it. It made me cry. Then one day it hit me.....if she were a "standard" girl, her age, she would have been away at college at that time and I would have had no help at home; I would have been up that proverbial creek with no boat. I am still recovering, somewhat, and require some assistance. When Jon (hubby) isn't home, I don't even have to ask.......Kira jumps in and does it. She says, "I love taking care of you mom." God knew exactly what He was doing when he sent our sweet bundle of love to us. He knew we needed her to teach us humility and she needed us to love and protect her, and to speak out on her behalf.
Sorry if I'm rambling too much. I had a moment today when I just looked at Kira, gathered her in my arms and planted kisses all over her head. I started crying and told her how much I loved her. She looked up at me and said, "Oh mom, you are so lovely." It just doesn't get any better than that!!!!

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PostPosted: November 20 2008, 11:09 PM    Post subject:
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Joe's mom's perspective: Then: driven (to be x, y, and z). Now: appreciation of the value of simply "being" vs. "being x, y, and z."

Little Joe's then & now perspective: Since a picture is worth a 1000 words and sometimes has to speak when the person cannot:

http://www.youtube.com/watch?v=zSfeiauegV4
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PostPosted: January 14 2009, 3:00 AM    Post subject:
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Even though my son is only 2mths. since he has been born i have changed totally! before my son was born I had a fear of people with special needs. I was afraid. I would avoid them at all costs. I would never ever me rude or mean but just didn't want to approach the thought of being around them. as i say them it hurts so bad. Since my son was born I feel totally different although i am still a little unsure of people with special needs I found myself almost looking for them in a crowd. trying to find another child with downs at the local walmart. My son has changed my outlook on people with special needs. they are just like us. they want to be loved and happy just like everyone else.


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Jackie & Ramiro Sr. Parents to Ramiro F. Lunares (with God 99') Angelina - 9 Mia - 5 Ramiro Jr. - 1 (Ds)
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Location: Georgia

PostPosted: January 19 2009, 1:34 PM    Post subject:
then and now
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In regards to who I am then. I was not a very patient person. I never had any stereotypes towards people with disability. However, I did not have much contact with anyone with down syndrome. Since have my son. I have become patient however, I still have my days. Each day is so much more meaningful. I learn from my son each and every day that goes by. I would not trade him for nothing in the world................I could not ask for more........He is truly the joy of my life.....





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Mom to Dy'Lon DS 10/24/03 (6). Mommies Pride and Joy!!!!!!!
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Farrah's mum
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PostPosted: January 20 2009, 3:35 PM    Post subject:
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hi my name is eman, i am new to this, however after my little beautiful girls diagnosis i felt that i needed to talk to other parents to children with downs syndrome.

i must say each one of your stories is very touching as the joy and happiness you all speak about that came upon u with yr child is very unique to each parent.

i must tell u a little about my beautiful daughter of 4 months and myself.

i have 5 children aged 4months to 13yrs before i gave birth to farrah (DS) i thought that my life was complete however the opposite was more true. alot of things that happend before and after my pregnancy with farrah were very unique compared to her siblings however farrah is a very unique child to me and my love and affection towards her goes beyond words. please dont judge me i love all my children in the same way and do not have a favourite child however something in my heart and soul stronger than me has an affection to farrah of which is different than her siblings. by the way farrah is my 4 month old angel.(i call her an angel because all she has brought into our lives since birth is joy and happines). when i look at her, her eyes light up like the stars in the sky u might think im crazy but im going to say this anyway,everytime since birth that i have looked in her eyes or at her face i have felt that she is trying to tell me something.

my princess has recently (1.5months) had an AVSD repair to her heart this was the worst experience in my life i felt that my life was going to end when i handed her over to the anaesthesist all i wanted to do was take her and runaway and hope for her heart to repair itself or some miracle to happen (i know sounds crazy the defect was so large that it was diagnosed when i was 4 months pregnant u can only imagine the stress of being pregnant for the next five months knowing your baby has a severe heart condition and that surgery at birth may be required if not within 3 months after birth). well thank god that nightmare is over.

to answer yr question how my baby has changed my life well i have always been a patient and caring person with people of all ages, sizes and disabilities. however i was also a very fast person meaning i wanted to do things asap, i always planned for the days ahead and never thought about the day im in. FARRAH has changed all this she has made me realise the beauty of life and to slow down and enjoy the little things in life which i would have missed with my others. she has taught me the most important lesson in life live and enjoy the day you are in and let tomorrow for tomorrow as plans never work out anyway.

i would like to tell u why feel farrah is unique before i even fell pregnant with her, well when i named all my children it didnt seem a problem to find names for them i didnt even worry about the nameing until they were born, however before i fell pregnant with farrah i was looking for a unique name for a little baby girl it took 6months of asking around for names and searching on the net. and when i found the name it was in a conversation i was having with my eldest daughter about my 18 yr old niece who was trying to take the fear of highschool from her. honestly as soon as my daughter said to me 'mum your niece farrah is so sweet she was telling me not to be afraid of highschool" , well i heard the name and i said stop thats it that is the name i want if i have a baby girl. as you see after all the asking and searching the name was under my nose.

when i look back it all makes sense to me now farrah is a gift sent from the heavens above and god was trying to tell me to choose a unique name that is why it was so difficult to find the right name. oh i must tell u FARRAH means joy and happines in my nationality.

anyway i will stop writing now i hope i dont bore u with my story but i have so much more to say that i feel i can type forever.

thank u everyone for the lovely stories u have shared in this forum as sometimes i keep these thoughts to myself incase people think i am crazy it is nice to be able to talk to someone and know that they are feeling what u are feeling without judgement .

Laughing
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KirasMom
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PostPosted: January 20 2009, 4:14 PM    Post subject:
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Welcome to the board. We are so glad you found it and to have you here. Farrah is a lovely name and I'm sure your daughter is too! What you say does not sound crazy. I believe we've all had some of those thoughts at one time or another. And I know what it is like to hand your very tiny baby over to the anesthesiologist. It was like they ripped a part of my body out. As I turned Kira over to her, Kira looked at me and smiled.....her very first smile. It was like God was telling me that everything would be alright. And the babies look SO scarey after the surgery.......all bloated up with a ton of wires and tubes. It was an awful time and I couldn't wait for it to be over. Those memories are fresh in my mind and that was 21 years ago!
Give Farrah an extra little hug for me.

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Jane, wife of Jon, mother of two adult sons and of Kira, age 21 (DS)~~~~All are precious in His sight.
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mellers_p
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PostPosted: February 15 2010, 4:41 AM    Post subject:
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Hi, what amazing stories. I am a new parent - my babies were born 10 weeks early in October. My little girl Emily was diagnosed 6 weeks later so we've been through the whole NICU, SCBU thing and are now going through the whole "My God, what the hell has the future got in store for us now?"
I got pregnant in March last year through IVF. Being 38 I knew there was a chance of Down syndrome, but hoped against hope. When the babies were born so early the dr's and consultants were working so hard to keep them alive, no-one noticed Emily's little eyes or nose, or the crease on her hand. I did though and asked for a test at 6 weeks.

Her daddy has completely accepted it (as far as I'm aware anyway). As far as he's concerned, we won't expect anything different of her as we do of her brother Jake. He accepts there will be extra challenges, but that we need to work harder at giving her every chance in life to find what it is she enjoys doing and encourage her.

I love her and her brother dearly, but still cry often at what 'might have been'. I know this is futile but I can't help it. It just isn't what I wanted. I don't want to have to go to support group meetings and special nurseries for children with special needs. I don't want to have to go to physio and I don't want to have to constantly worry about whether she is developing okay or not. Sorry, but I just don't! She is beautiful and I love her so much, but I worry about the future. Reading all your posts, it seems that hopefully someday I will start living for today rather than worrying uselessly about what might be. I hope that day comes soon.

You are all an inspiration and you are so brave. I hope I'm like you someday.xx
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4amMadonna
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PostPosted: July 03 2010, 12:24 PM    Post subject:
thanks for writing!
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Dear mellers p,
I think I can understand what you are going through because I have felt similar things. Jacob is now 10 months old and I still feel like I have been made to join a club I didn't want to join, and I still hate all the extra appointments.
Part of me has got used to some of it - it is part of caring for Jacob.
In those earlier months I found two things helped - the first was just spending time with Jacob and playing with him as I would any other new baby. The similarities outweigh the differences. I wanted to get to know him rather than a syndrome. Secondly, I cancelled some appointments and decided when I could see professionals rather than being at the mercy of all those appointments letters which seem to arrive. For me, this meant no morning appointments. Each to their own!
I'd also like to let you know that it was reading your message which prompted me to join this website - I wanted to respond, and to say that I felt the same and that lots of people writing here are maybe feeling better because they are further down the line. We all have to take things at our own pace and from what I've read no one feels great or accepting to begin with. You will, I guess, learn what your baby needs the more you get to know her, so it might feel less like 'therapy' and more like just trying things she might find helpful.
I still find it all scarey, it is not what I want my life or Jacob's life to be like, but I know I love Jacob and I'm gradually finding a way to do it my way.
Good luck, and thanks for writing such an honest contribution - you have helped me!

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Skylersworld
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PostPosted: September 28 2010, 12:35 PM    Post subject:
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well, this question actually made me sit and think of alot of things. Before Skyler was born, I was struggling trying to raise 4 children after my husband passed away in 2006. We were seperated, and he died of suicide. My life went into a spiral. Alot of guilt, blame and trying to pick up the peices of my children. I put myself in a cacoon, and didnt want to come out. Then i met Skylers father. I swore i would never fall in love again, but what started as friendship turned into so much more. With 4 kids though, i was not looking to have another child. When it happened and i had Skyler. In the beginning, i went through alot of depression to be honest, I thought, why me? What did i do, so wrong that god would give me another child and one that has a disability. I didnt think i could do it. But now.....i have realized that god didnt give me skyler to hurt me, or punish me, but to bring me out of my shell and show me that i could love again and that i had so much more in me to give. Even on a bad day, her smile and the way she looks at me, just changes everything and she has helped my other children so much and the love in my house is just unbelievable. I didnt know if we could ever find happiness and smiles, and laughter again, until skyler was born. I was blessed and there is a reason for why everything happens.

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Erin, Mom To...Ashley (17), Andrew (15), Jessica (11), Jeremy (5), Skyler 10 months (DS)








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