Then and Now....

[momofrussell]

I think I have asked this question in the past... or a variation of it... but wanted to throw something out there for all of you... would love to see how we have all "evolved" with our walk w/DS... helps puts things into perspective sometimes....so...

Tell us about how you were when you found out about the DX of DS... and how it's changed you now. Was the initial adjustment hard? Is it easy now? Has it changed things like your beliefs? You more sensitive on things now? More open minded? More conservative? How have you evolved in your "walk" with this all?

You don't have to really answer ALL of this like this... just was throwing out where I was wanting to go with all of this. I love to learn how far we have come as parents

THANKS! ;D

A.

[ashleysmom]

OK you FIRST ;D

[Monique]

I'll make mine short and sweet, sometimes i find it harder to deal with now that Jameson is 5 than he was first born. Cause now I have to let him out into the world (like school) and have to deal with more outside people trying to decide his future than just me.

Plus it's hard to not compare where he is in relation to typical kids and my own pre conceived ideas of where I hoped he would be by now (like he doesnt form words, and its difficult for him to eat regular foods, etc.)

I just keep trying to stay strong and positive!

Monique

But I try very hard every day to accept him for what he is (my beautiful little boy) and educate others on accepting all children who may be "different".

[andrewsmom]

LOL Annette!!

Ok I'll go first..but I have to warn you that I will really TRY to make this as short as possible...hehehe....Sorry!

We were actually very happy to hear Andrew had DS. I know it sounds strange but we were preparing ourselves for something worse. We had no idea if Andrew would even live let alone be able to accomplish all the things he has so far in his short little life.

I went in for an ultrasound early in my pregnancy as I had a "larger then date" uterus. They were actually looking for twins. My husband was with me along with my daughter. The woman doing the ultrasound kept asking really strange questions like "when is your next appointment with the doctor" and "Do you have someone else here to watch your daughter?" Believe it or not, I still didn't catch on. They said my doctor wanted to see me and review the results and asked if I could wait 10 minutes to see her. While we were waiting, my husband asked me if I thought something was wrong and I just blew him off. We only waited about 3 minutes before getting called in and in that short period of time, a woman walked in with a baby. He looked like he was maybe 6 months old or so, and he had DS. My husband commented how cute he was. I know, ironic huh?

My doctor came in the room and said she had some bad news. She said Andrew had hydrocephalus (excess fluid on the brain) and bilateral masses on either side of his neck. I think I remember her saying something about his femur bone not measuring up but I'm not quite sure. Then she began to cry. I don't honestly remember feeling any kind of emotion but I remember the tears rolling down my face and I couldn't stop them.

They wanted to send me for another "better detailed" ultrasound in another hospital and would call us when they had a date. On the ride home, my cell phone rang and they said they could take me at the other hospital as soon as I could get there. So off we went.

This is where we met doctor "doom and gloom". This woman was unbelievable!!! She told us she didn't know what the masses were on his neck, but it didn't look good. She then proceeded to tell us that if Andrew made it to term, he may never walk, talk or be able to eat on his own and we needed to make a decision. Decision? What??? I was furious!!! This is my baby. She then went on to tell us that if we went ahead and had him, we would probably have to put him in an institution of some kind. GRRRRRRRR..... I'm mad just thinking of this woman.

Shorter version.......we then went to countless ultrasounds, a fetal MRI and a fetal echocardiagram. (At different hospitals, Childrens in Boston, Brigham and Womans also in Boston and Umass in Worcester). Nobody could explain the masses on his neck. But we did find out Andrew has "cortical Dysplasia"(sp) which is a thickening of the cortical layer of the brain which is forcing everything over to the other side causing his hydrocephalus. Phew...that was a mouthfull!!!!!

To make my obsessively long story a bit shorter, when Andrew was born premature, the doctors were amazed at how well he was doing. We were told right away they thought it was DS, and we got THE STRANGEST looks when we both were so excited and happy...LOL! They actually sent a psychiatrist to talk to me...LOL...I think they thought I might have been in shock or denial or something...LOL!!!

Since those days, Andrew has changed my whole family. We all feel lucky to have him in our lives. He has taught us to slow down a bit, not take so much for granted, and to really rejoice in the small things in life.

Andrew is my 4th child and you would think he was my first. I never slowed down enough to notice all the little things my other children accomplished....now I do. I sometimes wish I had Andrew first so I could have learned all this for my other kids. But I guess I have him last to really be able to enjoy him.

I never knew anything about child development. Yeah, they walk around this age, talk around this age but what milestone leads them to another? How do they actually learn what to do next? I'm learning now.

You asked so many excellent questions about where we are now in our walk with DS. I can't tell you how much Andrew has taught us about life in his 2 short years with us. Every milestone he reaches, no matter how big or how small, we SEE. Yes, I saw my other children reach milestones but I REALLY see Andrew reach his. Maybe I can't explain it. It's just different. And it's a wonderful different. I wouldn't trade my "walk with DS" for anything in the world. It is just uncomparable. I feel so lucky to be on this journey with Andrew.

So, in all my babbling here (feel free to delete anything if you want) I would have to say I Have changed tremendously. I am much more "aware" of small things, from people's feelings to accomplishments and struggles. I have slowed my pace WAYYYY down and I've learned to sit back and let my kids succeed all on their own without me jumping in to "help".

OK... this is really long enough and probably boring people to tears!!! LOL! I'm sorry I'm tired and tend to ramble a bit when I'm tired. A.....if I didn't answer your questions, I'm sorry.
What?? You mean you didn't want me to write a book??? hehehe

-Trisha

[meghans_mom]

A - boy, yes I have changed. Initially, I was devestated, knowing nothing about DS - just what society presented to me. Mostly not a pretty picture. I did not enjoy my pregnancy...although I trusted whatever God had in the works for me and my family...I didn't understand the "why"...the why me, why us, why her? I felt like I was letting my family down, even though I knew in my rational mind that I didn't 'cause' MM's DS. THere was something there that said had I been a better person somehow, this wouldn't have happened.
I'm over that now :-D
[as an aside - i did the same thing when my mom got sick, each time she got more bad news, even when she died...i don't understand God's reasons for things, but I know he has them]
I think as we approach kindergarten and a whole new set of obstacles, new people and situations, it is becoming a bit difficult again...but I'll get over that too. I worry about MM, how she will be accepted, that she might get left out, that sort of thing that i think we all understand. Choosing to put her in a typical preschool situation will bring all those things...might it be easier to just put her in the same school where all the kids w/ DS around here go? Absolutely. Will it be the best for MM? That I'm not so sure about. But I digress.

Am I more sensitive. YES. About certain things..but then I also find I have less sympathy when my friends are worried about the most goofy things (not that i'd tell them...but I'll step back and roll my eyes)...yes, things are more in perspective.
(again - that has to do not only with learning to come to terms w/ MM's DS, but also the other life lessons I have had; losing my parents, losing a fiance, etc)
I appreciate the smallest accomplishments and treasure both my childen for all their abilities and dont sweat the 'small' things so much....the mundane things that i see my friends worrying about...that in the long run - really don't matter!
Yes, I'm definitely more open minded...and wish others were so. I do get bristly when I hear others w/ kids w/ disabilities speaking dispariagingly (spelling?) about their children or others w/ dis. I will speak up (to those I know) when I hear them using words I DON'T like...you know what I'm talking about.
I have met some wonderful wonderful people -- both children & adults w/ DS and their family members and made some great friendships - people I would have never met. A bonus. And people I *WAS* friendly with...not so anymore because of their old fashioned thoughts and attitudes about people with DS, and their families...another bonus....who wants to be friends w/ people like that?
When the day comes to an end - do i wish that MM didn't have DS? I may get flamed for this - but yes...because I worry that she will be prejuduced against, or teased, and will face extra struggles and hurdles that she may not have had to face. I worry what will happen to her when we're gone, and what Matthew will think if he has to help out with her...like the fierce mother lion(ess) - i just want to protect my kids and have the best for them.
I was pg with MM when we found out about the DS...we chose (there wasn't much of a choice here for us) not to terminate - I think there are so many variables with your children...so many things we have no control over....boy, I am rambling here and not really sure where I'm going...so I guess I'll just end this for now. enough confession for one evening :-)
laurie

[ALLISA]

hhhmmm....this can be pretty thought provoking.

When Erin was first born, I was not at all "devestated". I felt happy to have such a sweet, cute child. I had always found something very sweet and comforting in anyone I had encountered who had DS.

But to be very honest, I now feel more frustration than I ever thought I would. It is hard enough when I realize how behind she is with "typical" peers....but she is even more far behind other kids with DS who are younger than her !

That part makes me feel like a failure....how come my daughter isn't getting it ?

She's "supposed" to be cute, and loving....but she's actually slapping people instead of hugging.

So in all, I have realized that sterotypes are not the norm....all kids/people are unique and can't be lumped together. Every child will develop on their own pace and no matter what I do, I can't have it just the way I want.

I recognize that she can do things others can't and if I am very very very very patient I know she will reach the milestones I am waiting for. And I know that there are some milestones that she may never reach, and that isn' the end of the world.

But there is also the "lucky" part of me, that got the sweet cute little girl that seems to draw attention from everyone....and I do love that !!

Allisa

[Radonna]

At first I decided that IF my baby was born with Down syndrome (not Trisomy 13 or 18) and I got to take him home that I would make sure that he was the first President with Down syndrome. I accepted the dx but couldn't have imagined the delays that he would have.

He was really fast physically. He was standing in his casts from surgery on club feet. He was 13 months old and holding his own weight and walking around furniture. He could even take steps on his own. BUT his vision kept him from walking independently. When Kaden was 2 I still seen him as very advanced because he was climbing and could physically do anything. He didn't have low muscle tone he was very very sturdy and wiry. It was at two that he just stopped talking. He had words for about 6 months. Ball, Momma, No, Eat, Nana, and a few more I would have to look in his baby book to find them. One day I noticed that he wasn't using words at all anymore. I had heard of autism but even knowing that loosing speech was a sign of autism I didn't make the connection, partly because I just didn't want to accept it. My reason officially was that he was very affectionate to people that he knew and that the things that were autistic about him were vision issues and nothing more.

I spent about three years waiting for Kaden to magically start talking to me. I thought that Kaden's delays that were now becoming obvious were because that he was legally blind and if he could just SEE that he would be develop faster. Our life was on hold waiting until Kaden was 5 so that we could have his surgery done. This surgery the lens implants that would give Kaden his "eyes" was what I based all my hopes and dreams for Kaden on.
When I was told that Kaden's eyes could not support the surgery ALL my dreams fell apart and I went through a huge depression, similar to what people describe happening in the beginning.
THe only thing I ever cried about was Kaden's cataracts. Kaden having Down syndrome meant I could take him home and love him something I was scared to death I wouldn't have the chance to do. Kaden having cataracts meant that without huge uncomfortable glasses, putting contacts in the eyes of a baby that had always had sensory issue, or lens implant surgery, that he was almost totally blind. BLIND took me places Down syndrome never did. Blind made me think of all the things that I love and appriciate being something my child would never be able to enjoy.
I worked through the depression over Kaden's eyes and I found a new way of looking at Kaden's blindness. HE didn't know what he wasn't seeing. He was happy seeing things the way he was seeing them. He had only ever known his eyes and he didn't know you could see any other way.
*I knew* but he didn't

In the last 6 years I have changed my dreams for Kaden many times. When he got diagnosised as Autistic and when he lost the hearing in his right ear. When my son was displaying behavior that was challanging and I had no clue WHERE it was coming from.

Even Now I find myself redefining what I see for Kaden's future. He is growing in so many ways.
I always believed there was this cut off. This age line that if you passed you would never do certain things. What I am finding is that children are never too old to learn new information you just have to tweek the way you present it to them.

Today I am at a place with Kaden that I am very happy with. I leave the future open. I try not to put my own expectations in the way and just let Kaden be Kaden. He has shown me over the years that no matter what he does or doesn't do in the best or times and the worst through everything that we have been through that as long as we have each other that little else matters. He has also showed me that love is something that we can always count on to lead us through any situation. I am quite a different Mommy today because of what we have been through but I think that I am a better Mommy. I have learned to be flexible to my dreams and to not discount something because it wasn't part of my original plan. LOL
Kaden has really been MY teacher. I am SO lucky to be his Mom and I wouldn't change a thing!
Radonna

[liasmom]

I found out Lia had ds when I was alone and still in the hospital after having her. Actually the dr said something like she shows signs that she has down syndrome. My husband was at home with my son who was sick at the time. My husband did not want to have a "retarded" child. I was afraid to call him and tell him. My sister called and when I told her about the possiblity of Lia having ds, she told me that they would adopt Lia, if I did not want her. I was more than ready to say OK. My experience was in a state hospital with people with ds and it was not pleasant. Looking back, I know they would have been a lot different people if they had been raised in loving homes. I really had an awful time accepting Lia at all. My husband, who had been so verbal about NOT wanting a child like Lia- was quite the opposite. He loved her to death immediately. Now I think it is easy. It is a fact of life like having freckles and you just have to deal with it. Because of her we are more patient, loving and understanding of others. We really are better people. It really hit home, how much I loved her, when she had leukemia. I puts ds in a different light. I can say she brightens my day- I can hardly wait for her to get up in the morning or if I am at work I really anticipate seeing her and getting a big running hug and kisses.

[Kristen]

Hmmm...OK, then I thought DS was teh be all end all nothing worse could have possibly happened ever. I thought Carter would have a horrible life full of alienation, teasing, failures and that the best thing I coudl do was stay in my house with him and not come out. Not long before, my career fell apart, I was sick duing the pregnancy with very poorly managed preeclampsia that nearly killed both of us and then one day I go to the doctor and BAM! Your baby is struggling, there is no fluid, there must be something wrong with you we didn't know, you're having a section NOW - don't even pack a bag, just GO THERE - then oh, he's OK! small but scrappy, then oh wait, he has TOF, intestines possibly incompatible with life (those two things were actually totally wrong - he's healthy as a horse), and a crooked pinkie, so probably DS. Have two sleeping pills, I'll see you tomorrow. I spent the first night calling people at all hours saying I had the baby, but he's probably going to die and if he doesn't he still has DS. Then I would cry and hang up. Darn that ambien. I thought (here's honest for ya) Fine. This is actually okay because no one wants me or my retarded baby, so we will go back to our house and stay there and we will just have each other. I was totally fine with that idea. I have never felt worse grief, pain or dread than when I thought of what surely laid ahead for Carter. I would say, but what if no one loves him but us? What if he never has friends? What if he is lonely? Why did this happen to him and not someone else? Why was he denied the chance for a good, normal life? I loved him immensely, but hated what had "happened to him" even more. I sent myself to a shrink. She said one day the love will be bigger than the hate. That thought kept me going for a long time.

Now Carter is almost 4. I did leave my house, believe it or not, and life is better than I ever imagined it could be! Carter is doing great and what he does not excel at, he sure tries darn hard to achieve. He is very well liked by kids and teachers at his school - the aides fight over who gets to walk him in most mornings! He has grown and changed SO MUCH since he started preschool - he is really coming into his own. He is not talking, which is tough, but he tries a lot mroe than before. He did not walk until he was almost 3, but then he met all his IEP goals for PT before the school year started, so go figure! He is so smart and intuitive and funny and charming and crafty and enchanting...Carter exudes oneness and love. He loves to be himself! The lessons he has taught us are valuable so far beyond the value I previously put on having what I thought of as the American dream of perfection. Every day of his life I have thanked him for being my son and for picking me. I would not trade him for anything.

[CC]

I found out Chris had DS very shortly after he was born, although for some reason I thought it the whole time I was pregnant for no reasons, no tests that showed anything, I just had a gut feeling. Anywho when I was told, I truly fell apart, I was sooooo sad for this little baby I brought into this world with all the challenges that now were before him. For me honestly it was easier when he was a baby cause he just did baby things, eat, poop, sleep, poop, cry, poop, smile and yes poop LOLOL As he got older and I saw how hard things really were for him, my heart broke even more for him and I will honestly admit here there are still days now I wonder why he has to have these challenges.

Has it changed me, Hmmmm I suppose in some ways it has BUT exactly how I really don't know But for me just having children, one with a disability and one with not, just being a MOM is what I feel really changed me. I went from being a very self absorbed, care free kind of person to becoming a MOM that no longer put herself first only and brought out that Mama Bear instincts in me

I love both my kids with all my heart and yes after seeing all Chris has had to endure over the last 13 years YES if there were any way I would take away the DS for him, not fro me cause I am OK with it but for him if his life could be easier I would do it in a heart beat

Is it easy now, It has been easy for me I am not the one that struggles daily KWIM BUT Chris does and NO sorry I do not think its easy for him lots of times.

I love Chris with all my heart today, just as I did the day he was born but in all honesty for me I don't think him having DS was any great life awaking lesson for me. Just sharing my feelings as they are

CC ~

[Radonna]

I saw this article yesterday on another board and thought it went perfectly with this thread.



Granddaughter's a rare gem
by Beverly Beckham
Wednesday. July 2. 2003

I will have to apologize to her someday. I will have to tell my grandchild that I cried the day she was born.

Not immediately. Not when I first held her and she looked into my eyes and I looked into hers. There's a picture of this. Lucy, just minutes old, almost saying hello. I never shed a tear in her first 12 hours of her life when I thought she was USDA-approved top-of-the-line perfect Grade A baby girl. Then I was all smiles. I called my friends and said the baby has come. Lucy is here. Lucy is perfect - round cheeks, red lips, downy skin, blond hair, blue eyes.

We joked with her father, "Where are those Sicilian genes?" We hugged one another. We were so lucky. We got our miracle, we exclaimed. And there was no doubt that we had.

And then a doctor walked over to the bed where Lucy lay and he unwrapped her and inspected her. And he said the word test. And then he said Down syndrome.

We cried then. All of us. Instantly. Because what had been perfection just seconds before, what had been all joy and gladness and light, became, with two little words, imperfection and fear.

Stupid, stupid us.

How will I tell Lucy that we wept while holding her? How will I explain that in those first few hours we looked at the gift God created just for us and wanted him to make it a better gift. To fix it. To make our little Lucy just like everyone else. There's been some mistake, God. This isn't what we prayed for.

But isn't it?

Give us a baby to love, we begged and we have her and what sweeter, better, bonnier baby could there be?

People told us that it's only natural to grieve the loss of a dream. And that's what I like to think we did. We dreamed one Lucy, the perfect little girl - like Margaret walking with her mother, like Shiloh on the stage in her toe shoes.-- -

In those first few hours it was this dream that tormented us. And it blinded us, too, because all we could see was what Lucy wouldn't be. Here she was, infinity in our arms, fresh from heaven, in such a hurry to get to us that she arrived two weeks early. And we were judging her.

She left the angels to come here. She gave up paradise for us. And we cried.

Funny thing is she hardly cried. She opened her eyes and took us in, one at a time, and amazingly she didn't seem disappointed at all.

One in 800 babies is born with Down syndrome. The rarer the jewel, the more value it has. That's the way it works with things - with pearls and Lottery tickets and horses and art.

But in our world and in our culture, we like our people to be all the same.

How will I tell her that I wanted her to be just like everyone else? That I was afraid of different when it's what's different that stands out? Are the black sand beaches in Hawaii sad because they're not soft and white? Do four-leaf clovers ache to be three? Does the life that grows above the tundra wish it were rooted in a valley instead?

The red rocks of Utah. Icebergs. The Lone Cyprus. The Grand Canyon. And Lucy Rose.

We expected our life with Lucy to be lived on paved highways with well-marked signs, the rest stops never far from one another.

Lucy is taking us down a different road, a blue highway, instead. It's scary not knowing what's ahead. But no one, even on the wide smooth roads, knows the future.

We yearn for paradise. Lucy just came from there. She is heaven in our arms. We didn't see this with tears in our eyes. But we see it now.

[elenasmom]

We found out that Elena had DS with an amnio before she was born. And I remember telling telling the DR that I was never going to have an amnio because I would never have an abortion, so there was no need for an amnio, I didn't care what the AFP results were. Then my AFP came with a 1 in 10 chance to have a baby with DS. As my DH and I talked about whether to have an amnio, because in our minds, we wanted us and our families to have some time to adjust and get thru the greiving process or whatever they had to go thru before she was born. This baby deserved for everyone to be happy when she was born, just like we were happy when Mikie was born. For us, (I would never say for everyone, but for us) it was the right decision. We lived with the results of the amnio for about a week before we told our families. I wanted to wait until I could say the words "Down Syndrome" without crying before we told them, that took about a week. Anyway that's our story, I won't go into the Dr's way of telling us, but it wasn't very nicely or sensitively done (altho, I think they were TRYING to be nice and sensitive).

Anyway, I have always tried to enjoy each stage of pregnancy and babyhood and childhood and not wish for the next stage before it got there, KWIM. So that works well for me as far as anticipating any delays and obstacles. This in itself is a GREAT BIG CHANGE for me. I am kind of anal about planning, following the plan, etc. Having Elena has helped me to be less obsessive about it. She is so affectionate and such fun, she really has made us into a different family than what Mike and I thought would be. But in such a great way.

[Radonna]

I am just putting this up at the top because I invited someone to come and read it.

Radonna