Did any of you ever want to know "why"?

[momofrussell]

When you found out your child had DS, be it during or after the birth, did you NEED to know "why"? Did you think it was something you ate or drank, something you did or something passed along in the family (I am not talking translocation though)?

I did not have these feelings myself, but am wondering if others did out of fear or not knowing, ect....

I posted how our cousin is pregnant with possible cancer and possible child w/DS. Although she is still waiting for her biopsy results for the cancer part, she did have her US and amnio today. My inlaws saw our cousin's mom and her sis (our two aunts) this evening. My MIL was telling me the questions they were asking her and we gather that maybe fear and the not understanding that sometimes it "just happens" is what might be driving the questions.

They asked my inlaws about Ray... my FIL's (and the two aunt's) brother.... because he was born "deformed" (for lack of a better term i don't know the DX) like that had something to do with our cousin's baby. Ray does NOT have DS... he was born with a deformed hand and some facial/muscle things Kevin tells me. So, this clearly has NOTHING to do with DS but the Aunt's questioned it. They also asked MIL about her neice and nephew... "didn't THEY have a child w/DS too!?".... yes they did, but they are not blood related at all to this side of the family....

My MIL said that DS usually it is NOT heriditary... they said "ARE YOU SURE?" And unless Tina is a carrier, this would not come into play. They equated the other family members issues at birth to thinking this was something hereditary, not seeing it is an apple, eggplant and tire they are comparing.

My MIL did not understand why they were asking these questions and thinking they were related. I told her that it was probably fear and ignorance of the subject. Not ignorance in a demeaning way, but just not knowing all about DS and not needing to ask me or someone else who has been there.

So... did some of this happen to any of you? I am just curious.... I did not have these feelings of wanting to know WHY or that it WAS because of something else. I was asked by a friend's husband while pregnant with Russell if I was going to find out WHY? I said, there isn't a reason why.. and this college boy (psych major) TRIED to tell me there WAS a reason why... and I should be finding out.... he was so far off base for me....

Thanks...

A.

[laurasnowbird]

Nope, A., can't say that I went looking for a reason. I was educated enough to know that DS occurs at conception, so I knew I hadn't done anything to cause it. Ethan didn't have translocation DS, so as far as I was concerned it was random genetic error.

Having said that, everyone copes with a diagnosis like DS in their own way, and some folks just might need someone or something to blame. I've known people who had difficulty accepting the fact that it was a random event, and had to find a "reason" that it happened to them. Looking for a hereditary link might be their attempt to find a reason.

And you're probably right, they would probably (certainly!) benefit from talking to someone who could make sense of it for them, but maybe they really don't want to know yet. I would probably wait to be asked, given that they MUST know that you are educated about DS.

[liasmom]

OK-this is my husbands story. Shortly after Lia was born and the dr told us she probably had down syndrome Roger asked God" Why us, Lord?" Meaning why did you do this terrible thing to us. After a few years passed Roger asked God the same question"Why us Lord?"-with a different meaning. Meaning why did you bless us with this wonderful child. Not that it is always easy- but she gives us 300% unconditional love and shows it every chance she gets.

[PaigesMom]

I also asked "Why" in the sense of "Why did god give me this child" and "Why does he think I can handle this after everything else I've been thru" (losing my mom and my ex finace to death)

But I never asked "Why" in the sense of "Did I take to much Tylenol", "Did I not take enough vitamins" , etc. etc. etc.

I dont know if I have ever disclosed this or not but one of the biggest challenges I face with Paiges diagnosis with *MY* family is the question of her Down syndrome being hereditary. I have a 56 year old Uncle with Down syndrome - my mothers brother - who is still living. Paige has Trisomy 21, my uncle presumably has the same (however no one knows if they ever did that type of testing) - but some people in my family still refuse to believe it is not hereditary, especially now since there are two people with it.

After she was born, after the *initial* shock wore off, I did wonder in the back of my mind, which I think any person probably would, until the karyotype came back saying she had Trisomy 21 and then my mind never wandered there again.

During the waiting time though, I didn't get all encompassed and *blame* myself or anyone else for that matter. Even though I wondered why I had been chosed to raise this child, I knew it must be for a good reason, regardless of how it came to be.

Hope that makes sense.

[Valerie]

I can't say that we ever questioned why. Our kids are 16 and 2, it took us that long to have another one, after years of trying. We were just so happy and felt so blessed to have Nicholas, "why" never came into question, just many "thanks."

[christie]

A. Hmmmm quite interesting ?. Actually for me I am the same as Deb aka Paige's Mom. My thoughts were NOT what may I have done for this to happen to my son BUT more like WHY I have always heard ALL my life, God wlll not give you more then you can handle, Hmmmm have to be honest here, at the time I thought BS to that he has given me way more then I can handle.

FUNNY reading your post, made me remember my boss's wife at the time telling me this happen cause I did not take enough "Folic Acid" (sp?) at the time

My Doc put it in the way that not for nothing but this was basically "Pot Luck"

Sooo with all that NOOOOOO I never wondered or ever do wonder, could it been due to something I did, cause I know it wasn't.

CC

[Jodi]

After I found out about Ryan having Ds during my pregnancy, I wanted to understand more about Ds. I really didn't know much, and wanted to learn all I could to help Ryan when he got here. I do remember reading something about a large percentage of the "sticky gene" issue is related to the mom - and so I had a lot of guilt about that at first.

My mom was a basket case. She blamed my gyno. It took months for me to explain and for her to understand that he had nothing to do with it.

My dad thought it was hereditary because his brother has Ds.

My In-laws said "God only gives special people special children". Uh, hello? We are all God's children, and unfortunately there are some kids with disabilities that are not in the best living conditions, if you know what I mean. I think they just didn't know what to say.

Anyway, When I had my two week check up at my ob/gyn, one of the nurses went on about how her friend smoked/drinked A LOT and that is why they had a baby with Ds. Unfortunately, my mom heard the whole thing (LOL) and I found myself in many situations where I had to gently educate others about the common misconceptions about Ds.

A co-worker was pregnant shortly after I had Ryan. She came to me one day and said, "I hope it doesn't bother you, but I am having an amnio because (my brother in law) had Ds and I want to make sure my baby doesn't have it". What do you say to something like that

I think you've done a great job encouraging your cousin. It's a delicate situation. I remember telling people (in helping them to feel comfortable about it all) that it stinks this has happened to Ryan, that no one is to blame, and that he is still my boy. Period.

[ourangelalicia]

I certainly thought God was crazy for thinking I could handle anything at that point....my Grandmother had just died and she was my best friend. Along with lots and lots of other things that were happening just before, during, and after my pregnancy with Ali. There was several things I always wondered about, the "weird" theories about what causes DS. Since I am so young it was always weird to me, because I thought it would be odd for me to have "sticky" eggs already.

I wondered because I was on birth control for three months before Ali was conceived, and for about 10 days after. Ali was conceived sometime the week of May 26th - 29th of 2002.

During that week I had a UTI and was put on antibiotics (for the record antibiotics making birth control less effective is NOT just a myth it is definitely true!) for it. I had shoulder surgery. My Grandma died. I never took the painkillers for the shoulder surgery but did always wonder about the anesthesia. I also wondered about all the x-rays I've had in my life. (Probably close to 50 between broken bones, shoulder, ect. I was very accident prone as a child!) I wondered because after my surgery I drank about a wine cooler a night for a couple of days, to relax the muscles instead of taking painkillers. (The painkillers make me sick and loopy, so the wine cooler was the better option.) There has been many things that I've wondered about, and several were eliminated from the list when the second one was born without DS....but I've never really let any of them bother me.

I've just come to the conclusion that my Grandma special ordered Ali for me. And oh boy does Ali's attitude ever remind me of my Grandma. Grandma would have absolutely loved to see my kids grow up.

I never needed to know why, I just needed to know "what now". What do I do next, where do I go from here, I want to know everything I can possibly do to help her. That type of thing. It still remains that way today with both of my girls...I could spend alot of time wondering why my kids have to have so many medical issues, but it wouldn't do any good. Researching those issues and how to help them is a much better option.

I have a cousin who also has a little boy with DS, he and Ali are a few weeks apart...he was born on her due date, he was late and she was early. And my Aunt's husband has a Grandson with DS who is 9 years old...but I've never met him. Other than that I don't know of anyone else in my family with any type of chromosome issue. Other things, asthma, reflux, seizures, sensory issues, ect are very much genetic. But there is no trace of the chromosome stuff (and even very little Alzheimers) in our family.

[ambersgrandma11]

I am Grandma to Amber 6, DS and hearing impaird, I also have a half brother who has a grandaughter who is DS, we have the same mother. My mother had me when she was 40, we did not know Amber had DS till she was born, so it was a shock. At the time I thaught only older women had DS children. After Amber was born I wondered if because my mother had me at 40, that was, some how, why Amber had DS.I wondered if some how I passed sticky eggs to Vickie. She was my 4th child. Vickie was 25 when she had her. I had Vickie at 25. I cannot see us not having Amber ,she is the JOY of my life !!!

[YoshsMom]

When Yosh was in NICU for so long and we didn't know when he would come home, I wondered "why me" a little. The pain of going home without him seemed unbearable. But since then, all DH and I have wondered why about is "Why did G-d entrust this wonderful child to us and will we be good enough parents for him?" We just can't get over how lucky we are. Sorry if it sounds sappy, but thats how we feel.

[Cbean]

OK, this is making me think of when Nancy Kerrigan got hit in the knee by Tanya Harding's goon and she rocked, holding her knee crying "Why, why, why..." over and over again. Well, that was me the day I got THE CALL, only I wasn't holding my knee or wearing skates.

No one else in my family seemed to ask, or care. Just me, but like others have said, why was asked as, "Why me?" Like CC mentioned about God not giving you more than you can handle...I look back on my life and feel prior to getting pregnant with Em I went through enough, but apparently He felt differently. I feel like my cup runneth over too and view this as another part of God's wicked sense of humor...the same as hormones with pregnancy and the duck-billed platypus.

I know the "why" is b/c I was OLD! And I too felt that guilt and still do that I was too old to be getting pregnant, that it was my "bad" eggs. OMG CC! The folic acid thing prior to getting pregnant - I thought about that one too!

Then the flipside of this "why me?" is that this baby is one of the easiest babies I have ever seen. She is like a little ray of sunshine and I too find myself wondering what did God see in me to entrust this perfect angel to someone like me. This baby smiles at me all the time, with her whole body! Gosh she just warms my heart.

I still find myself thinking the poor, pitiful "why me?" occasionally, but I catch myself now. After all, who says it has anything to do with me? It may just happen to be all about her and I'm just the caretaker!

Great post - glad to see that I'm not the only one with these thoughts!

[momofrussell]

Cbean...not to be nosey.. but you said you were OLD when having Emily.... you are NOT THAT old are you? LOL

I was 30 when I had Russell. By all accounts I was not in the "old and sticky egg" catagory.. and many, including the docs said I was "young" to have it happen.... God had a plan for me... sticky eggs or not LOL....

A.

[wrblack]

Well, speaking of old, I'm getting so old I can't remember where I read this or if I've ever repeated it here. But heard story of a mom who at first asked, why me, God, why did you put such a burden on me. And then later asked, why me, God, why did you pick me to be the mother of a child who is such a blessing.
And for her second question, she actually thought she got an answer from God. He said, what do you mean, I didn't pick you, your child picked you. -- old Bob, who has no business on this thread, but have a great day anyway

[Kristen]

I will freely admit that I thought "Why?" for a LOT of reasons. why now, why us, why him, why not that lady down the hall, why does anyone have this, why can't we all crawl in a hole for the next 20 years and not deal with why...But I already knew it was nothing I did. It just happens, but like anything else that happens in life that isn't what you expected, you ask why. It's toally natural and a part of the process. I have absolutely ZERO reservations about discussing it. I actually just went to a conference on the impact of a child's disability on their parents given by Dr. Ken Moses and it was brilliant! I could only stay for half and was there as a voulenteer for school, but next year I will be there the whole time! I'm gonna start a thread with a link - there were people's lives being changed in that room talking about just this kind of thing and the stigma attached to the natural grief process in parents that follows unexpected news (an anyone else who has a shocking/sad experience).

[kristin]

I agree with the "other Kristen" on this one -- I think asking "why" is a natural part of accepting a new and likely uninvited occurence in anyone's lives, whether it is divorce, unexpected change of location, death of a loved one, etc. And ultimately, it leads us to learn more about ourselves.

It sounds like asking "why" was a positive thing for most people that have replied here too, even though they might not have realized it at the time!! Because if they hadn't asked "why" in the beginning of their journey (why me? why DS for this baby?), they would never have realized that the "why" question could actually have turned around 180 degrees after they realized what a true blessing these children are!!

Even though I am a real believer in 'everything happens for a reason', I don't know that any of us will ever know FOR SURE the "why" ... We are left to speculate and resolve our situation in a way that works for us as individuals and individual families.

The irony is that no one asks "why me?" when they have a perfectly "normal" baby; yet who's to say they won't ask that question down the road a ways, when they are struggling with a child who rebels against their family and runs away, or who makes choices that cause the child to have problems with the law, etc. Maybe I am wrong, but those are the kinds of problems I hope to be immune to with my child with DS!! Now that we've accepted his diagnosis, and he's totally captured our hearts, I wish we had his "Birth Day" to live through again -- I think we'd have been throwing a party, rather than grieving!