Horrible Confessions (warning depressing)

[faithhope]

I wonder if I should post this, but I feel that we are a family, when no one else can ever understand but you. I have to write this quickly cause Noah is crying desperately, just need to get this off my chest. I worry so much about what others think or are going to think. I guess I have worried too much about others my whole life. So the worst thing that could happen is having a child with Ds. not only a mental disability which in itself is the most devastating thing I could have imagined for our baby, but a physical difference that makes them stand out and sadly be judged immediately in a negative way.
I have been guilty myself, as a child I used to be scared of Ds people, because an aunt of mine used to take care of them. These were people that were severely mentally adn emotionally handicapped, now thinking about it, they were probably raised in an institution or by parents who didn't have any resources to help them.
Then later as an adult I looked at them with sadness, like oh look at them, how sad, sweet but sad.
Noah is a cute baby right now, but even now once in a while I look at him and sometimes I can really see the Ds and it hurts me so much. I hate to say it but I can't stop thinking what will people think, and why do I hvae to have this be my situation. Going anywhere, like we are going to san francisco for the weekend, I daydreamed about doing this with our new baby before he was born, now that he is here I don't really look forward with excitement. Just going through the motions of life.
So if not even his own mommy can see past this Ds, how can I expect better from a stranger, or family or friends.
People don't know what to say when we tell them and I hate that there is now something to tell them, becuase Ds will never go away.
OK I really have much more to say but Noah is so sad right now, I feel horrible. I have to pick him up.
Again I am sorry an dI really hope I don't upset anyone, though I am sure I have. I don't want to be so negative. You all help me so much, but the sadness always creeps back.
Love,
Jessika

[Kristin]

Jessika,
I also had a fear of being around people with disabilities. Even after having my daughter it took awhile before I felt comfortable. I used to be concerned about what people thought. Most people either ignored us, or were positive because they had been around people with DS. Noah will do many of the same things other kids do. His childhood years will seem to last longer, so in some ways you get to enjoy them more. At this point in your life, take things one day at a time, and I promise you things will get better.

[momofrussell]

Well, you surely haven't upset me!!! Remember this IS still new to you... just let the feelings out and deal with them as best you can... and I think you are doing a FINE job of coming here and letting them out!!! That is a big step and give yourself a break, k?!

Ok.. on the feelings you are having and the worry what others will say, think, do, etc. I will give you just one piece to think about which holds true to other areas of our lives and works REALLY well with having a child w/DS too. IF you talk about something, like your son, with pity, others will pity you. If you talk about things in your life, like your son, with pride, people will take pride in your possession. If you talk about things in your life like it's the BEST thing in the world (even when it isn't), people will think it's the BEST THING TOO!

So.. basically what I am trying to say is that with your son, through out this journey, people will take their cues from you. If you tell people that Noah has DS with your head hung low or with waiver in your voice, thinking you don't know if you should tell them, doubt they will say the right thing...they will respond JUST in the way you don't want them to. If you just say matter of factly, with a beaming smile... THIS is Noah.. my wonderful son... and he just so happens to have DS and THAT is ok.... then others will know it's OK!

I have never had a bad reaction yet and I've been shouting from the rooftops for many years that Russell has DS...people follow my lead and smile with me!

Then.. if this all doesn't sound like something you are comfy with right now, then you can do what some do and just don't make a deal out of the DS at all. Just say, this is my son Noah and leave it at that. Then if someone asks more, you can answer their questions (remember them taking their cues from you though in your answers).

There are some like myself that probably over-share about the DS, and others that don't make it a big deal nor bring it to the forefront... it's all what you are comfy with. I say, shout it out loud with pride! LOL

And of course... you can STILL feel like you do..it's OK!!!!

HUGS Jessika..keep the thoughts coming!!!!

A.

[Connie]

Jessika,

Please know you are not alone in your feelings. Someone here has been there before you.

You have the right to be grieving right now....you lost your dream!!

But, please take this in the way it is meant (caring and not mean)...

Noah is not that old....It's just been a couple of months since his birth so besides being sleep deprived you also have a lot (A LOT) of raging hormones that are readjusting from being pregnant. This can make your emotions and feelings go silly!!!

Also, just because you had a baby that happens to have DS it does not exclude you from getting post partum depression. Plus with the diagnosis, it comes with it's own issues that are not hormonal.

I'm not saying this is what is going on, I just want to make sure your aware and that this too could be happening.

Hugs girlie,
Connie

[damarasmom]

Jessika,
What you are experiencing is not so out of the ordinary. I had gone through a period of depression and extreme sadness when Damara was born. She seemed to have so many health issues along with her DS that it was over whelming. I felt like I was robbed of having a healthy, brilliant, wonderful girl. I knew she was to be my last child and the realization that I was now having to raise a child with such disabilities was making me crazy.
Well...it took some time for me to get past that. She is now 3 1/2 yrs old and she is simply amazing. She does so much more than I thought she would, she is bright, beautiful and very sweet. She draws people to her like a moth to a flame. She has brought our families together, brought us back to GOD, and has taught me so very much.
Even though today I feel very blessed to have her in my life, I still do NOT feel guilty for my feelings at the beginning. They are natural and normal and we have all felt this way or simular to this.
Please take comfort in knowing that you are not alone and not the only one who has had these feelings. And with a little time, you too will come to know and love your son for who he is, not what he has!

[Chris]

Jessika,

I have to echo what Connie has said. I know that the diagnosis of Ds is devastating but your sadness seems to be more than just the Ds. Please call your doctor and let him/her know how you are feeling.

When I was going through a very difficult period in my life, I experienced situational depression. I made it through with weekly therapy and anitdepressants.

If Noah is able to cry like you are describing, he is doing great! Forget about the Ds and enjoy that beautiful baby. I wish I could give you a big hug and hold your precious son.

Chris

[ALLISA]

I LOVE what A said......it is very true.....

Erin was born in the middle of a blizzard and we came home from the hospital without her ( she spent a week in the hospital due to cardiac issues)......all my neigbors came rushing over ....eveyone assumed we were home and had the new baby with us.

My husband told them all in ( what I thought ) was the most horrible, depressing, negative way.....he didn't mention her name, her size nothing....jsut " she has DS and needs open heart surgery".....I wished I could have done all the talking !! Everyone kind of skulked back to their house in quiet hushed way.....

So it helps to know what you are going to say....It helps to start off with the GOOD news....Baby boy, his name is Noah !! but, there were some surprises that we didn't expect and were not prepared for.....he has DS... so we are a little unsure about making sure he has all the support and resources that he needs.

I also think you should speak to a doctor about your feelings, your hormones and be sure that depression hasn't settled in ! With overwhleming news, post-partum hormones, etc....it wouldn't be farfetched to think.

[Googsmom aka Jennifer]

I really agree w/ everyone ahead of me Jessika. A is a smart cookie, reminds me of how I was when Brook was born. Shouting how wonderful my new baby was. The baby I had waited 12 years for was finally here and I was super happy!!!! Still to this day if some one has a question about Brook, i get a big ol' smile on my face and , you know me, talk about my Brooker just as I do Mary or my neice. I absolutly love all my girls and will brag untill someone falls asleep If they happen to ask a question about Ds, my responce has ALWAYS been, "Oh that, it's just Ds, no big deal. She is an angel and i'm the luckest mommy EVER!!"
I also agree w/ the others. Maybe it is time to have a Jessika doctor appointment. Couldn't hurt right?
You questions are fine w/ me sweetheart I just wish I could give you a BIG HUG

[faithhope]

Thank you all from the bottom of my heart. I am sitting here crying my eyes out. You all brought me back to a much happier reality. I also have to say that I think you are right in saying that what I am going through is a little more than just a sadness over the situation. I definitely am going through depression. I do not want to go anywhere, I stay in my room all day. I don't smile unless I have to ( in front of my parents).
I have never believed in taking medication. I always felt that mind over matter was best and God would bring me through it, but this time I just don't know. I know God is there with us and NOT letting me down, but I can't be like this with a baby to care for. I hate to act like this when here he is all innocent, never asking for this, and his momma is barely there mentally.
OK thank you again,
Love,
Jessika and Noah

[Emilysmom]

Jessika,
Hugs to you. As much as you're not quite ready to meet us in person just yet, I sure wish some of us could be there to give you a hug in person right now!!!

You said you had always worried too much about what others think. In a stressful, sad time like now......that's likely to be even MORE of an issue. It's going to take time, and it might take some concentrated effort to tell yourself "this is about ME and my family and my son". What other people think truly does not matter. You just can't think too far in the future........take it one day at a time. YES, Noah is cute today. And just wait to see how cute he'll be as a toddler!!! Trust me!! I've been alive a LONG time and one thing I know for a fact........cute babies just keep on getting cuter!!!!

As others have said; postpartum depression might also be a problem for you right now. I don't know a lot about postpartum depression. But I do know about depression. I went through a period of grief about 4 years ago when my mother died. I kept telling myself that it was "expected" and "natural" to be grieving. But it seemed to me to be TOO intense. I cried daily for at least six weeks. I know it's not at all the same thing as what you're going through..........and yet, it was a loss. You've lost the baby you dreamed of for so long, and that's a very real loss. In my case, I went to my doctor and poured my heart out to her. She ordered an antidepressant, and I was AMAZED by how much it helped!!! I only needed it for a month and a half, but I believe it was exactly what I needed during that time. It didn't prevent me from grieving, and it certainly didn't make me giddy. But it made all the difference in the world for me and helped me move on. The fact that people have a "good reason" to be depressed doesn't mean they can't be helped by medication for a while.

Please know that we care, and we're here for you!!
Susan

[Myria]

Hi Jess,
I am never offended by what you write, I really appreciate your honesty! I often find myself thinking of you and little Noah, hoping that both of you are well. And you are family, so of course I worry about you being depressed! I hope that you start feeling better soon {((Hug))}
Take care of yourself and give that sweet baby a kiss for me!
Myria

[victoriasdad]

victoria is eight, i still grieve for the could of beens and the would of beens, it doesnt make me a smaller person or a poor father, i love victoria with all my heart, when i first found downsyn.com i would read the posts and i would cry, and cry, personally i will always grieve, later when i found uno mas i knew i found my home, , it really feels like we are all family, i feel despair sometimes fear, and fustration, and when i cry victoria will come up behind me and she will pat me on the back and tell me "it tay daddy, it tay, " when we learned victoria has ds i named her victoria, it means victory because i knew in my heart as scared as i was, as devasted as i was , i knew that her life would be a victory , what ever life has in store for us we would win in the end.
, ive never been embarrassed about victoria, actually, wait till someone stares at your baby in a negative way and you stand up and ask them what the f.... are they staring at? that will happen once in a while,, but you knw what happens most of the time?, almost every time youre in public, people , strangers, they will walk up to you and look at your baby, and smile and tell you how beautiful your baby is,,, and then they will relate to you some one they know with downs or someone they know that has a baby with downs, and wait till youre in public when the baby is older and how he-she will run up to strangers and hug them, and watch the peoples faces as some of them for the first time in their lives get pure,unshelfish,innocent love, you will be proud of your child 99.9% of the time and embarrassed01% of the time, you really cant say that about our typical children, its kinda late here and im rambling somewhat, but what im trying to say is give it some time, most of what your worried about will just evaporate before you know it, we arent trying to pump sunshine up your wazzoie, things are sometimes going to be tough, but you have the support of the biggest, warmest, lovingiest (is that a word?) family in the world, where people you dont know will stop and hug you in the store, it might now be the best world possible, but sometimes its d**n close..............

[Jackie]

Jessika...everyone else has said it all...my advice...Take that trip to SF and then write to us when you come back about how it went. Love to you.

Jackie

[momofrussell]

Speaking of post partum depression, it's funny. I never had it with Regan nor Reece but I DID with Russell for about 3 months. Even though we got the DX of DS when I was pregnant, and we actually took the news pretty good, Russell was in NICU for 2 weeks and just the reality of it all finally hit. I think grieving a bit for "what was and what wasn't" hit me and with the hormones made it hard to "bounce back" like I normally would. So I did take some happy pills for about 3 months just to get back on track. It wasn't like I was sitting in my room for 3 motnhs crying over Russell, it was more of a "feeling" I couldn't shake because my hormones were out of whack from having a child and everything else just impacted it. I thought I was going to be ok but realized I needed a "jump start" back to ADRIENNE! ;D

So.... PPD can hit us when we don't even know it!

A.

[Ericsmomma]

I can remember when Eric was a baby, he didn't have alot of "features" that would suggest Down Syndrome. In fact, some people would ask me "Are you sure he has Down Syndrome"?
(na, I made it up!). And to my embarressment, that would make me happy. It was like, if he didn't look different, maybe he would be more excepted....even by me. Sounds shallow, doesn't it? As time went on, I realized it doesn't really matter if he looks "Downs" or not...He is a beautiful little man with a killer smile, my eyes, Dad's hair, and his own personality. He's part of us, just like any other child, just with a extra chromosone. The lessons I've learned along this journey are life changing. Not only for myself, but for everyone who knows and loves Eric. What a blessing he is for all of us.
So don't feel bad when you have these thoughts and feelings. We've all been there.