Shocked, Afraid, Angry, and Confused Mom

[babyC]

I learned that my son had DS as I saw his head being born. My stomach dropped and I had a horrible dread feeling. I had a home delivery with just my husband and myself in the bathtub. It was a wonderful birth. I am in the medical field so I was not scared or nervous about the birth. I had three ultrasounds and all were normal. He was born 7 lbs. As soon as I saw his face, I knew he had DS. I did not tell my husband in hopes that I was wrong but it was confirmed later by drs. He does not have any medical issues and I am thankful for that.

I hate that he has this disorder. I did not think that I would have a child with DS. Not that I am any more special than anyone else but I just never thought it would happen to me. I am not a "why me" person - I think - why not me. I have millions of feelings and I do not know how I will get over the DS. I had a perfect life: supportive husband with a great paying job, travel a lot, two smart and pretty girls, I get to stay home with the children, I love my husband very much, and I love my life. But this has thrown me for a loop. I do not think that I would have had an abortion if I knew earlier about the DS but I do wonder sometimes. I never knew how vain I was until now. I do not like the look of a ds child. Will I get use to it and one day think he his cute? Right now he looks like he has DS but some days it is not as obvious. I hate it but I am embarrassed that I have a child with DS. Almost like it is my fault. That I am defective. In my head I know that is not true but I feel like it at times. I ask myself "Why did I have to have one more child? Was I just asking too much?"

I worry about his life and my future as an "empty nester". Will he be able to read and write? Do math and drive? I want all my children to attend college. If they do not go, than I am OK with their choice but to have that possibility taken away from my son (whether he can attend) I have a hard time dealing with. I do not mean attend for life skill courses but for a degree. Will he have a job (not just a mundane job - like sweeping floors at McD's)? But then again, I am being judgmental about what I think a good job is. If that is what he wants to do and is happy in that job, then I should respect that choice. But is it a choice when he may not be able to do anything else? I understand that DS adults can live on their own or in a residential center. That they can get married. But will he be able? I am a great mother and generally not over bearing or controlling. I love my children, but I want them to move on after they become adults. Have a life of their own and experience the world their own way. Not have to have me always in their life and caring for them. I want to be an empty nester and have a second life with my husband. Not have to care for my son the rest of my life. I am afraid of people picking on him and hurting him. I am afraid that he will be taken advantage of by others and not know it or know it but not care because they are his "friends". I am really going to have a hard time about his learning/intellect issues. In fact there are many issues that I am worried about having a problem accepting. I am sure that I will eventually but ....

I get mad when I hear parents say that their DS child is a "blessing" and the best thing in their lives. I am not sure where the anger comes from. Maybe because I can not see a child that is going to be more work or not live up to what you thought your child would be like as a blessing. Or maybe because I have not come to that place where I can see myself as feeling the same way. I am just so confused about how I feel. One thing that I am not confused about is that I love my baby and I want him in my life - in our family.

Did other moms go through this too? I looked at the general chats and the subjects are all more or less "Rosy" except for the medical issues. But how do other mom's feel deep inside in the beginning? When you take away all the policically correct responses and strip away to the core? Am I the only one who has a sick feeling in their stomach and worries about not being able to accept the limitations of DS?

Again, I love my son and it is not about loving him or wanting him in my life. That is not the issue. It is about the DS itself and how it will effect him and his life.

I hope I did not offend anyone. That was not my intention at all. I am looking for advice, help, and understanding on how I will deal with this and not see it so much as a death sentence.

Thanks~

[lorraine]

Things are obviously very new and raw for you at the moment, you have done an excellent job of putting all your feelings down here, I think I can speak for myself and others here that you have described feelings that we have all felt to some extent.
But I can promise you that these feelings Will fade, it just takes time.

I know personally that when William was tiny I thought alot about the future, schools, jobs, etc, I would lay awake at night wondering what would become of this little baby.

But gradually as the days and weeks passed I found that it became less important as I got to know him and now I don't think about it much at all.
Someone said to me how unfair it was to be having to think about such big things when it never crossed my mind when my older two were born ( I also have 2 older girls) and that is very true.

I wish you could look into a crystal ball for a little peep at the future, so you would know that everything will be ok.

For my family DS is is no big deal at all, I honestly do feel blessed to have William and my girls.

Anyway Welcome to Uno mas, You have joined a great site here.

Take care

Lorraine

[Jackie]

Hi...and welcome. I sent you a personal message so be sure and check for it.

Jackie

[Connie]

Hi and Welcome!!

First, you have to realize we do not all react the same way and what you are feeling is normal for you and it's not wrong. It is ok to mourn the child you thought you were going to have and the dreams you have lost for this child. In time you will have more dreams...they will just be different.

Your story started off a lot like my own. Me and my husband had the perfect life. We had two beautiful boys and I was pregnant with my 3rd. As soon as they laid him on my chest I new he had DS. But, like you I didn't say anything. If nobody else was saying anything I had to be imagining things...it wouldn't and couldn't be true. But, it was and I had to go on and learn to accept the fact my child has DS.

I was terrified at the thought of how this was going to affect my typical boys but, in time we came to grips with everything and all fell into place. It was easier for me than it was for my husband but....it all worked out. It worked out so well that 2 years later we had our 4th child...a little princess (man was that a surprise).

Your son will amaze you will all his capabilities and things he will teach you. In time he will do things just like other kids...it may just take him longer!!

My son Collin is now 9 years old and in first grade... I chose to make him start kindergarten at 6 instead of 5. Then, I had him repeat kindergarden....to give him a good foundation. Collin is fully included (except being pulled out to go to the resource room for math and English). He does the regular 1st grade curriculum with minor accommodations. For example...on spelling tests we used to give Collin two choices and make him choose the correct spelling of the word. Then in February after his IEP we decided to make him spell two of the words on his own...just sounding it our or memorizing it...like the other kids.

Well, today on the pretest Collin got 6 out of the 10 right doing it just like the other kids....and all on his own. (Because, this week had been screwy and I didn't get the chance to study with him!!!) While not perfect, I am still so proud of him and amazed!!! Same words as the rest of the kindergartens an taken the same way!!! What more can I ask for.

Your son will do amazing things he will just have to work harder and keep in mind there are no guantees your "typical" boys are going to fulfill the dreams you have for them either.

Things will get easier as time goes on and remeber you have a lot of new friends here who have went through just what you are going through....we can help!!!

Congrats on the birth of your new son!!!

Connie
(mommy to Griffin 13, Gray 11, Collin 9 and Laurn (the little princess) 6)

[damarasmom]

First of all, I want to say Welcome to the site and I sure hope that we all can help you. We found out about our daughter at birth also and we were actually ok with this. However, we seemed to have a much harder time with her health issues, her heart and wondered about her survival. I did go through a good 2-3 months of depression. I was sad for the child we didn't have, sad that she had to deal with everything as she aged, sad that our family had to go through this....all of it! It was a VERY difficult time for me along with the hormones...Oh my! Well, our Sweet little girl is now getting ready to turn 5. She walks, runs, learning to ride a bike, is working on potty training, laughs, has a WONDERFUL sense of humor, knows her ABC's, counts, has friends at school and is very social. We are VERY happy that we have her and would not trade her for anything. Just know that what you are thinking is normal (I felt great guilt for having some thoughts and didn't want to say them outloud ) and that really with time, you will get to know your son and his personality and soon he will simply be "YOUR SON". I just wanted to let you know that I too had bad feelings/thoughts and I think it's normal to feel a "loss"....Keep your chin up!

[Chris]

Congratulations on the birth of your healthy son! You are so blessed to have a healthy child. He will add so much joy to your family. I promise!

I understand that you did not choose to have a child with Ds but that is the card you have been dealt. Go ahead and grieve the loss of the child you thought you would have and then get on with loving the gift you have been given. One day you will love his face and think he is the cutest little boy ever.

I was blessed to have suspected that my daughter would have Ds when I was 16 weeks pregnant. It was confirmed at 18 weeks and we found she had a serious heart defect when I was just 20 weeks pregnant. I needed that time to get used to the idea of having a child with Ds. By the time she was born, we were as joyous as any new parent.

Again, congratulations on the birth of you new son.

Chris

[Googsmom aka Jennifer]

First {{{{{{{{{{{{{{{SUPER BIG GIANT HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
I want to sit with you and hug you. You will, in time, feel Blessed. You will I knew Brook would be born with the little something special. I couldn't wait. After her birth she needed to be in the hospital and THAT was the hardest for me. I know alot of mom's and dad's have your same feelings. It's your way of processing the info. It's OK!! You found a great place here at Uno. These people are my BFF's and I love them all dearly in their own way.

Try and take it one day at a time. Your other kids will love the new baby I can't add much more than the girls before me have said. Read through this sight a bit. You'll find alot of great things are kids do. I'm guilty myself I'm always posting some new adventure Brook has done. She is a cool kid. I love her! She also has a blog (in my siggy) where i post alot of poems, fun stuff, all about the fun Brook has and what a life worth living her's is! I was just about to go post about her first real day of school. Real pre-school

{{{{{{{{{{{{{{BIG HUGS}}}}}}}}}}}}}

{{{{{{HUGS EVERYONE}}}}}}}}}

[laurasnowbird]

Wow, you said a mouthful. I think just the fact that you are able to be so brutally honest with us speaks well of your ability to cope with all of this. You aren't hiding from your feelings, and that is a GOOD thing.

There are certainly plenty of challenges that go along with the diagnosis, no question. There's a saying hanging on my refrigerator: "God doesn't call the qualifed, he qualifies the called". That kind of sums up how I feel about all of it it. We weren't qualified, we had no clue what to do with this child when he made his appearance. We weren't "special" and it made me d*mn near crazy when people said we were. As if. And if being "special" meant having a child who was different, I wanted no part of it. I also felt as if my body had somehow betrayed me by failing to produce the child that I wanted.

I didn't spend a lot of time being upset about it though, that's not my way. I'm a fixer and a doer, and I got busy fixing and doing. Took me a little time to realize I was the one who needed fixing, not Ethan. He's just fine, in fact, he's perfect.

It struck me that Ethan wasn't sad about not going to college, that was our sadness. Ethan wasn't sad about any part of his life, he was just a baby, like any other, who needed the love and cuddles of his parents like any other baby. Our sorrows belonged to us, and we needed to own them, and let go of them.

Ethan has had a remarkable influence on our whole family. We are all better people since he made his appearance, and his impact on his siblings is nothing short of profound. When my 10 year old daughter's teachers rave to me about how kind she is, how willing to help anyone, how accepting she is of people's differences, and how skilled she is at helping people without making them feel LESS than, well, I know who to thank for those traits.

I can tell you that so many of the things I feared in the beginning have turned out to be nothing more than shadows under the bed. Ethan is a very happy seven year old. Our life hasn't changed in any major way. He can sometimes be a real challenge, because the stubborn gene seems to have been triplicated on that 21st chromosome, but so far, if you weigh the negatives and positives on a scale, well, let's just say it's no contest, LOL! Ethan brings out the absolute best in people, and I'm amazed at the things that people will do for him.

My little guy has been taking skiing lessons this winter, private lessons with a young man that he just adores, named Micah. Micah's a pretty special young man, although I didn't know just how awesome he was until a couple of weeks ago. Ski lessons were over, and on a beautiful morning last week, Micah called me and said "Hey, it's a gorgeous sunny day, what is my little buddy doing today?" I was surprised to hear from him and even more surprised to find that he enjoyed Ethan so much he was seeking out his company on his own time. They're going again this week, and Micah's planning to take him rollerblading this summer to keep his skills up.

Ethan's principal often tells me that he's the most popular kid in school, and that the teachers have already been fighting over who gets him next year. I know we won't always have that kind of luck, but so far the kid has had an angel on his shoulder.

There aren't any guarantees in life. A high IQ is no more a predictor of happiness or success than wealth or beauty.

And I can see why the whole "blessing" terminology would get to you at this point. You're not feeling that way about it at all, and I don't think many of us did in the beginning either. I don't think Down Syndrome is a blessing, it poses a major challenge to most of our kids. But our children? Lord knows I count Ethan among my MOST precious blessings, and someday you'll feel the same about your son. And that, perhaps, is the biggest blessing of all, when you let go of your anger and fears, stop seeing the syndrome and just see the child.

Please continue to post, and don't be shy about sharing how you really feel. No one here will judge you, and there's almost nothing you can say that hasn't been said before, LOL!

Welcome to Unomas, and to our "family". We're glad you're here.

[Radonna]

I would not say that Ds itself is a blessing but I would say some of the by products of having a child with Ds is a blessing. Of course we all want our kids to be typical and to not have to face some of the challenges they face. I say the one blessing that having Kaden has given me is the ability to be flexible. We have this rigid way we define a "good life" a "normal life" having that "million dollar family" and Ds comes along and it just shatters that dream. No matter how blessed many of us feel I think for most our first reaction WAS devestation, and asking why me. Ds redefined my dreams. I am grateful for the experiances I've had being Kaden's mom, I'm grateful for the dimensions that he has added in my character and that of his brothers. I wouldn't have chose it if I had my own book to write but I would have missed out on a whole lot of joy.

The rosy picture you are seeing on the Ds boards have been painted by Moms that have a few years under their belt. We didn't all jump into it thinking Down syndrome was the best thing ever.

I also wanted to add that having 46 chromosomes doesn't guarentee a happy "perfect" life. What scares me the most is the unknown. I'm sure that is what feels so overwhelming to you right now.

My only advice is just take it one day at a time and just enjoy your baby.


Congratulations on the birth of your son.

[Emilysmom]

Welcome to Uno Mas! And, congratulations on the birth of your son! I'm eager to hear more about him, and hope that you will stay with us and let us watch him grow and develop.

There were no websites like this one around when my daughter was born, 17 years ago. I think it would have been such a help for me to have others to talk to who had truly experienced some of the same feelings I was having. And yes.............I had most of the same feelings you expressed. I was not one of those mothers who felt like they had been given a special "gift", and I certainly never felt that we were chosen to be Emily's parents because WE were special as her parents. I was sad and scared for the future; just like you have described. I agree with what so many people have said about the "fear of the unknown" being one of the worst things of all! Those things I once feared have not happened, and I can NOW gush about my daughter and all the positive things that have happened as a result of her being born into our family. We just took it one day at a time, and I think that is the key!

Please know that we are here for you, and will support you all the way!!

Susan

[wrblack]

Hi, and welcome to the club and to Uno Land. Hope you don't mind hearing from a dad. Yep, different people react differently in an array of different, though similar, circumstances. And did Snowbird just tell you to suck it up and deal with it? Hm, that seems a bit harsh.
" . . . and not see it so much as a death sentence."
Ah, yes, exactly. The first time I saw Charlie, I thought he was dead or dying. Had Apgars of 1, 5, and 7. But that's another story. And so was Michael Berube's, in his book Life As We Know It. He thought both his wife and son were dying. So when later they told him they thought the baby had Down syndrome, he was like, so what. And when a pediatrician sat them down and went through a whole catalog of what his son wouldn't be able to do. His response was, ok, so maybe he won't be a brain surgeon, might have to settle for being a pediatrician.
How old are your son's sisters? Wouldn't think they are teenagers yet. Even so, Brian Skotko has a new book out, speaking of doctors,
www.brianskotko.com/index.php?option=com_content&task=view&id=20&Itemid=5
Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Brian G. Skotko and Susan P. Levine is the first book written exclusively for teens with a brother or sister with Down syndrome. In an easy-to-read, question-and-answer format, nearly 100 questions are tackled on a broad range of their most common issues and concerns. This book gives teens the green light to explore their own feelings and questions about their sibling with Down syndrome and how their relationship may change in the future.

And you might like something that Pam Wilson wrote for moms some time ago,
www.bellaonline.com/articles/art32533.asp
Thoughts From the Middle of the Night
When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.
Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.
I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.
I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend.
My son will be six years old in a month. His sister is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously how life for the whole family would be better if the other disappeared, leaving an "only child." Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.
I can't imagine life without my son. Sometimes when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up, and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to one another like sweethearts in a perfume commercial. I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it.
My son is not a Down Syndrome "superstar," but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. My son has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago. I believe he needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance.
Last night was parent night at my son's kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.
And she dug up something to put on the list just yesterday, not sure why,
www.riverbendds.org/index.htm?page=july02.html
Down Syndrome is Contagious by Wendy Holden. Reprinted with the permission of the author.
Wendy Holden, Kittitas County Parent to Parent Coordinator, lives in Ellensburg, WA. Eli, born December 30, 2000, is her sixth child.
Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways.
Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed.
The section of the brain used in logical thought undergoes dramatic changes. Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.
Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classroom of medical students and educate the population at large about issues they are passionate about.
These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.
The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individual fortunate enough to be infected.
Whew, maybe too long -- Bob

[Jessie]

Welcome to UnoMas and congratulations on your new baby boy!!

When you are ready and have time, check out the couple of topics that are 'sticky-d' on this general forum - 'You've Come a Long Way Baby! Misconceptions' as well as 'What's Good About Having a Baby with Ds'.

Enjoy your baby while he's still a baby . . . the time that you will need your running shoes to chase him around will come soon enough!


Jessie

[Chris too]

There is no better place on Earth than Unomas21 for airing out these feelings I can see that all I wanted to post and more were already posted here by these most excellent people. I am so glad that you came, you joined, and you posted. I do hope you stick around - I love the way you write and hope to get to read more from your new experience.

All that's left is to add my WELCOME to Unoland!

Chris too

[Chris too]

I do want to add: brace yourself for some adjustments to your worldview and some pretty intense personal growth. You sound like the type who will manage it nicely.

[Googsmom aka Jennifer]

I want to share this with you too. It is from a Down Syndrome convention that was held last year (was it last year or the year before, i can't remember) Alot of the mom's here on this board and a couple other boards wrote little snipit of What they wish they'd known from the start. Please read it, it's nice {{{{{{HUGS}}}}} again this fine morning. I hope everything everyone is saying has helped in some way.


What Parents Wish They'd Known

This booklet is a collection of thoughts from parents of
children with Down syndrome, who responded to this question:

What do you know now that you wish you'd known from the start?


v


I wish I'd known that it wasn't the end of the world.

--Joseph, dad to Janna (3 years)


v


I wish I'd known Down syndrome does NOT make being my son's mommy,
or loving him, difficult or different.

--Kathy, mom to PJ (8 ½ months)


v


I wished I'd known just how much like a "typical" newborn my baby would look like
when she arrived. I was a bit scared and feared the unknown, but was pleasantly surprised:
Ten fingers, ten toes, two eyes, two ears, a mouth and a nose . . . PERFECTION.

--Robyn, mom to Amarli (7 months)


v


I wish I'd known to listen more and assume less.

--Chris, mom to Stevie (3 years)


v

I wish I'd known that I could be the best advocate for my child.
I didn't even know what the word meant, but I know now that I have no problems
standing up for Hope, and this has made me better at standing up for all my children.

--Debra, mom to Hope (4 years)


I wish I'd known how much having a child with a disability in my life
would change the person that I am.

--Robert, dad to Hope (4 years)


v

I wish I'd known that I would say and feel so often, "You're so smart!" or "You are the cutest kid
in the whole world!" I wish I'd known I would use words like "sparkling," "vivacious," and
"infectious laughter" when describing my child. I underestimated her.

--Nancy, mom to Gabriella (3 years)


v

I wish I'd known how very joyful and in love I would be every second of every day.
When my son was born, I worried, can I do this? I cherished that worry because it meant his
was a life worth worrying about. I'm glad I know now that I don't have to worry.

--Kitty, mom to Nathanael (2 years)


v

I wish I'd known that my daughter would be so able. To clean her own room. To charm grown men.
To plant the garden with me. To play dress-up with other little girls. To read and write.
To be a friend that cares and shares. She is so able.

--Jeni, mom to Joy Daisy (6 years)


v

I wish I'd known that my baby wasn't going to die. We were left with so many unanswered questions and I thought for sure that it meant she would die within hours.

--Renee, mom to Kennedy (4 years)


v


I wish I'd known what a wonderful teacher my older son would be.
He is Owen's inspiration for everything—walking, talking, playing, climbing, eating, etc.
Jason treats Owen like a kid, which is exactly what Owen is.

--Tricia, mom to Owen (2 years)

I wish I'd known that my son would develop a personality like any other child.
I spent so much time wishing his babyhood away wanting to know what he was going
to be like. I wish I had relaxed and enjoyed the sweet baby I had.

--Ann, mom to John (5 years)


v

I wish I'd known that this unexpected journey that began 4 years ago would not be one of sadness,
but of unspeakable joy, filled with more love and pride than I ever thought possible.

Shirley, grandmother to Aleena (4 years)


v


I wish I'd known . . .
Not everything I read would happen to my child.
I would love her more than anything else on Earth.
Her hugs and kisses are real, from her heart.
She is just like any other kid.
She would make me a better person.
Her laughs are the best music.

--Jennifer, mom to Brook (2 years)


v

I wish I'd known how incredibly in love I would be with my daughter, how much fun
this whole process would be, and how amazing our friends really are.

--Francine, mom to Sofia (3 years)


v


I wish I'd known that my son would attend his local school, and would have lots of friends
who just accept him and like him for who he is. I wish I'd known how
happy and normal our family would be.

--Naomi, mom to Callum (5 years)





I wish I'd known . . .
That it was OK to feel broken-hearted when we first heard the news
That having a child with Down syndrome is NOT a life sentence
That my son would have his own agenda for doing things
And that it's a privilege to be his mom.

--Sara, mom to Nathaniel (9 years)


v


I wish I'd known that, although they say our kids "stay little longer," they still grow up too fast.

--Meredith, mom to Brianna (2 years), Emma (5 years, adopted),
and Micah (1 year, adopted)—yes, all three with Down syndrome!


v

I wish I'd known that my daughter would bring me only happiness, not pain.

-- Destiny, mom to Lily (9 months)



v

I wish I had known that my son would have received two awards at the end of second grade:
one for achievement in the Accelerated Reader program, and the other for being a "Number 1 Best Friend."

--Vicki, mom to Aaron (8 years)


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I wish I'd known that children with Down syndrome just as loveable, kissable, snotty, tantrum-throwing, bubble-blowing, huggable, and milestone-making as their siblings.

Ava, mom to Daniel (3 ½ years)


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I wish I'd known that I didn't have to be afraid, that it would all be just as it should be.

--Rhonda, mom to Alex (8 years)


I wish I'd known how deeply in love I would be with my son, and how
I wouldn't know what to do without him and his diagnosis of Down syndrome.

--Vonda, mom to Noah (9 years)


v


I wish I'd known how much joy and happiness Olivia would bring,
not only to me and my wife, but to everyone around her.

--Mike, dad to Olivia

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I wish I'd known that she would survive two heart surgeries and continue to thrive
despite leaks within her heart. Her tiny heart was once a great big hole,
but it's full of a great big love that we get to experience each day.

--AJ, mom to Janna (3 years)


v

I wish I'd known he would be so full of life! He is intelligent, creative, a sports nut—
just like his siblings. He's a social butterfly, a love bug, an amazing little boy.
I wish I would've known he would be more like us than different.

--Jennifer, mom to Brady (3 years)


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I wish I'd known . . .
That his sisters would love him so much
That he would have an awesome throwing arm
That he would have lots of friends
That he would read and love books
That he would do all the wonderful things little boys do.

--Anjie, mom to Adam (5 years)




I wish I'd known I would look Avery and NOT see Down syndrome.
I see her as this amazing, smart little cookie—strong-willed, self-reliant, and cute as a button.
She walks around like a little queen in a parade, waving, hugging, and talking to everyone.

--Kathleen, mother to Avery (3 years)


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I wish I'd known having identical twin boys both with Down syndrome would bless our family
more than we could have ever thought. They work together, play together, and show us
how to take life one day at a time, and enjoy every moment.

--Stacy, mom to Caleb and Isaac (2 years)

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I wish I had known that she would get through her heart surgery, that she would crawl
and walk and play just like any other kid, that she would be able to communicate so well,
and that life would be so normal.

--Karyn, mom to Talitha (2 years)


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I wish I'd known that it isn't that hard, and that my daughter isn't different
from any other little girl her age. All my dreams for her can come true!

--Kelly, mom of Alexis (2 ½ years)


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I wish I'd known how normal and silly moms of kids with Down syndrome really are!
I thought they were all supermoms that were like angels in the flesh—now I know the truth!

--Cas, mom to Jirah (2 years)


v

I wish I'd known life wouldn't be defined by the myths and misconceptions I had
about Down syndrome, but instead, it would be as "normal" as normal gets,
and my son would fill my life with love and joy beyond comprehension or measure.

--Sandy, mom to Lucas (19 months)

I'm actually glad I didn't know much about Down syndrome when my son was born.
I think if I had, it might have ruined those moments and that connection I had with
my son the moment I saw him. I would have thought of the negative,
not of the fact that I had a little boy who I loved and was perfect.

--Judah, dad to Jaemen (3 years)

v

I wish I'd known the pure joy, happiness, pride, love, and dedication that my baby would show us all. I wish someone would have told me that this baby was going to change my outlook on life, make me a better mother to his siblings, a better wife to his daddy and a better person to this world.

--Carmen, mom to Jaemen (3 years)


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I wish I'd known that it was ok to grieve and scream, cry, vent and be angry. I wish that a facility or network had been in place to reach out to me, instead of the other way around. I wish that every parent coming home today could see my girl and how she smiles and loves.

--Amy, mom to Larkin (2 ½ years)

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I wish I'd known not to believe everything the doctors said my child would not achieve,
such as breastfeeding. I wish I'd known the immense gratitude my son would bring to my life
just by reaching up and touching my face. I wish I'd known that I would never feel shame
for having a child with Down syndrome.

--Andrea, Mom to Alex (10 months)


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I wish I'd known the new lesson on love that AJ would teach me would fill my heart
in a way I wouldn't have thought possible. I wish I had known of all the
positive changes I would see in my other children.

--Ibby, mother to AJ (2 years)


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I wish I'd known I was strong. My husband and I always thought we were the people who
couldn't handle raising a child with Down Syndrome. Actually, there's really nothing to "handle."

--Stephanie, mom to Megan (4 years)

I wish I'd known the stands would erupt with cheers when she got a hit in baseball,
and that her classmates would circle around her with love and protection if anyone was mean to her.
I wish I'd known that "being slow" would mean savoring every step, every puddle, every blossom.

--Michelle, mom to Ciarra (9 years)


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I wish I'd known that children with Down syndrome are NOT happy all the time.
Darah throws temper tantrums and needs time-outs just like every other three-year-old.
I wish I'd known that when Darah was first born, she was MY baby. When she was in the NICU, I felt like the hospital owned her and was afraid to speak up with my concerns and questions.

--McKenna, mom to Darah (3 years)


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I wish that I had known that my broken heart would one day heal,
and the love that I felt for my son was the cure.

--Kristy, Mommy to Zachary John (3 years)

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I wished I'd known we were going to be okay, that this one little chromosome was just a tiny piece of our lives. I wish I'd known that the dreams I had of the little girl with long dark hair were still going to come true! That while she may beg for a green Mohawk at times, she's still that little girl in my dreams.

--Leah, mom to Angela (12 years)

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I wish I'd known that this would be such a marvelous journey,
and that everything would turn out . . . JUST FINE.

--Jackie, mom to Emily (28 years)