Hey everyone

[h+l+t08]

Hiya.. Well first things first, my names Lea and I'm 19 weeks pregnant. We found out this week or daughter has spina bifida. Apparently its quite severe and starts just below her ribs (lumbar??). We're still having a lot of tests but have decided we will definately NOT terminate, she deserves a chance at life as all other babies do.

Anyway.. everything was fine, we've talked about, had the biggest discussion of our lives and decided on what we want, and now my mother has stepped in and decided that she doesn't think we should keep her. Firstly, its none of her business right? IMHO she's only saying this because it will have an impact on her life - she won't get the perfect first grandchild that she wants. :( And it makes me sad. I don't know what to say to her, because I am really really angry at her, I just.. I've made my mind up, so has my partner but my mum is just so overpowering and always thinks she can sway my opinion and tries to run my life. Its not like we haven't thought about it/talked about it.. I don't know why I'm even saying this I'm just so frustrated and wanted to talk to some people who would REALLY understand. I know our daughter may have major problems, but if I am willing to stand by her, why can't my mother just understand that? Yes, everyone is entitled to an opinion but isn't it hard enough without the one person you should be able to count on trying to tell you what you should do?
I hope everyones babies and themselves are well. :)

[blessingsabound]

Well, you wanted someone who can understand, and truthfully I can't even imagine my mother (of all people) wanting me to end the life a my precious unborn baby (we found out last week that ours has SB too). But I congratulate you for standing strong to this point! You've made the most important decision of your life, and you will be so blessed because of it. When you actually meet your little one, it will be worth standing up to your mother. Your daughter is a special gift! You're right--I'm sure we're in for more challenges than we've ever faced before, but she deserves the chance to live and love. I bet she'll be a joy to all she meets.

If you ever need a listening ear, please feel free to email me at myangelcarli@yahoo.com.

[angel]

Hi I am 31 years old and have sb myleo level L4/L5. I know the stories my mom told me about the way people reacted when i was born. She had the luck of not knowing about my sb til i was born. She told me that had they found out beforehand that she knew that everyone would have pressured her into getting rid of me. She was told most of my young life that she should place me in an institution and let them deal with me ( i don't know if they have institutions anymore but they did in the 70's) She did what SHE thought was right and I am so glad she did. I have a great life. I am fully independant. I live a thousand miles away from my family now i am married to a wonderful man who just so happens not to be disabled. I have an 11 year old son and an 11 year old stepson. I went to college, I run my own business and life is GOOD!!!!!!!!!!!! I think a lot of people say things out of fear. They think just because someone isn't just like them that their life is gonna suck and that simply isn't the case.
I know for my entire life people gave my mom hell for the decisions she made for me. I know she fought a lot of the battle alone. I know that no one expected very much out of me. My mom however treated me like i was just like everyone else. She made me do for myself, she told me when i was 18 that i was out of her house just like she told my brother and sister. I was ready to fly on my own because SHE believed in me!!! and she taught me just like she would any other child. She knew that just because i couldn't walk on my own didn't mean anything other than i couldn't walk. It didn't mean that i couldn't live my own life, make my own decisions have a family, a career and anything else my heart desired. Your child will be fine as long as you believe in him/her.
Keep your chin up. You have found a very supportive group of people who will be more than willing to help you out in any way possible.

Angel

[Barb]

When C was born my sister in law (who was a nurse) called my mom and told her "you know, she doesn't have to take him home...". The fact that my mom ever even passed that on to me has always hurt me.

Having a baby with a disability is a very very hard thing to come to terms with. For you, and everyone around you. People don't know how to act. A simple thing as do they say "I am so sorry" or "Congratulations on your baby" can be such a landmind. I know it doesn't help but please try to remember that most people that stick their foot in their mouth are just lost on what to do. Of course, your mom is a different thing. Hopefully educating her about sb will help. Try to find pictures of people with sb. I know that helps at your stage just to see that life is fairly 'normal'. My blog is in my signature. It is just boring family stuff but you can see how 'normal' we are. Whatever normal means!

BTW-congrats on your baby!

[h+l+t08]

Last night my Mum picked a fight with me. After going on about how it was unethical to bring up a child with SB, she ended the telephone call with 'If she really has SB, the only person who would allow her to be born is the devil.' That helped, obviously. So now I have lost all of my family (I don't see my Dad and I see everyone else through my Mum) and all we have left is OH's family. There's a big distance between us and them and I am thinking of moving closer. I just don't know where to turn, because the one person who should be there no matter what has told me my baby doesn't deserve to live and that I am evil for letting her have that chance.

[kali]

I am sorry you are going through such hard times....hugsssss.... she is completely wrong, you will be blessed by God by chosing to bring your child into this world and taking care of her. I am completely against abortion, a child with sb, is really no different then any child. she needs everything any child needs and she will give you everything that any child gives to her parents , but so much more. feel blessed! we are here for you if you need us.once your mother holds her grandchild in her arms she will realize how beautiful her grand child is, sb doessnt change the beauty of holding a newborn in your arms.

[Barb]

:eek:OK---I just have to say that is terrible. You are going through enough right now without dealing with that negativity. I would cut communication with her until you have had enough time to deal with this on your own (that could be years, lol)

[emandp]

Hi Lea...congrats on your baby!! We are in a similar boat as you (19 wks; recently learned that our baby has SB). I just want to add to others' supportive posts, since we JUST experienced the same process of having to tell family members and parents. Your mom's reaction sounds particularly unkind and hurtful, and you are smart to distance yourself from such cruel comments at such a sensitive time. I did want to add an observation from my own experiences over the past week. Our parents are initially hit by this diagnosis almost as hard as we are, and possibly harder, because while we have the pleasure and privilege of knowing our baby is growing inside and seeing her/him on the ultrasounds and bonding with her during all the tests and time spent in doctors' offices, our parents must watch from the sidelines. This allows them to be far more preoccupied with THEIR baby (i.e., US) than with ours. It is possible that your mom could be lashing out in fear for you and the pain that she believes YOU will have to experience in raising a baby with special needs. And it may be possible that with further education and time to absorb, she may come around.

None of this is to excuse her cruel words! And if she is generally more hurtful than supportive of you, then distance might be the best thing. But if she has the potential to be a great ally and source of support after coping with (and apologizing for) her initial reaction, it might be worth hanging in for. I saw firsthand my own parents' ability to adapt to these new realities, albeit more slowly than we did.

I hope this is helpful. No matter what, it sounds like you guys are doing well and have a solid foundation to welcome your baby into the world!

[lolathechecker]

one thing i have learned is that babies are babies. sb or not, she will still look into your eyes, will still love you unconditionally, will depend on you for everything and will grow up to look at you like you hung the moon. my family was not supportive at all about my decision to keep the baby. but they have since come around to the fact that shes going to be ok. this isnt some terrible disease. its just an afterthought when you are holding your new baby. so she'll need a surgery, so what? that doesnt mean she wont be a wonderful person. and even if she never walks, she can still do so many fun, wonderful things, like ride a horse, or a 4-wheeler/ go-kart. she could do archery, play pool, and there are numerous wheelchair sports. life doesnt end at walking. here's some links to videos of kids with sb. maybe they can help you to feel better about your decision, which is the right decision for you.

http://youtube.com/user/jenericpotter

http://youtube.com/user/cpreusse

[angel]

Maybe education would help. I have found that when people assume things with little or no info they come up with the most horrible things one's imagination could produce. I hope education helps her. My dad never really listened when my mom tried to explain things about me to him. Sometimes people don't accept the education. Either way you will have a beautiful baby and i know he or she will bring you all the joy in the world. Grandma might be surprised how wrong she is after the child gets here.

Angel

[kali]

I remember after I my son wasw born, I had so much negative support, peoples comments just made things worse, but I hanged in, it was hard, but I told everyone I am going to fight for my son, and stand beside him no matter what. I was even told that the money I was going to put towards the operations was a waste, since a child with sb will die with out an operation, before two years old. people said the most horrible things. as if I am going to sit and watch my child die without a fight! today he is a handsome 9 year old. my son made an example to the other moms who had babies with sb. he showed them just how normal a baby with sb really is. they deserve the fight! hugssss

[Dodger67]

Its great to see all the positive support pouring out here - but please guys & gals - lets not drown in syrup and cooties!:eek:

"What doesn't kill you, makes you stronger!":cool:

[Barb]

Its great to see all the positive support pouring out here - but please guys & gals - lets not drown in syrup and cooties!:eek:

"What doesn't kill you, makes you stronger!":cool:

And there is the Dodger that we know and love. :p

[Dodger67]

Hey I can do hunny & cooties just as well as the next guy/gal!
Ask my GF about what went down at her house on Sunday-Monday of the Easter weekend!
On second thoughts - Don't you dare ask her! - lets just say we parted on Monday evening with both of us very happy!

OK, seriously now folks - thats enough thread hijacking - I don't mean to trivialise the problems that the OP is facing.

We are behind you 200%!!!

Its strange how so many people get fixated on the "won't be able to walk/walk normally" issue when it really, honestly, is the least significant issue of all that someone with SB has to face up to.

[angel]

Its strange how so many people get fixated on the "won't be able to walk/walk normally" issue when it really, honestly, is the least significant issue of all that someone with SB has to face up to.

I have to agree with you 100% on this statment. The not being able to walk is really the least of it all!!! However that is the one thing people focus on most. In my opnion it is funny how many people think they know so much and are so so wrong!!

Angel

[Barb]

But I can honestly say that as a new parent it takes YEARS to really understand that. C was maybe 6 by the time I got that.

[angel]

I can imagine it must take some time. I had an advantage ill explain. When my son was born they were telling me about the back problems they had found. I was like ok no biggie because i have been down this road. It was more than familiar to me so i wasn't scared at all. I think i almost came off as cold about it but i knew everything would be fine with him weather he walked or not.
Now when he was 3 or 4 we went to the urologist and they found sugar in his urine. They told me to have him tested for diabeties. I FREAKED!!!!!!! It scared me so bad. I knew nothing about diabetes and i could only think how it would suck to get a shot every day and all the other stuff that went with it. I was more afraid of the unknown. People think i am nuts that I was scared by that more than the other stuff but the unknown is terrifying.

Angel

[blessingsabound]

Although I'm on the beginning end of this (our little one with SB will be born in July), but right now, it's not the wheelchair, physical therapy, spints, casts for club feet, or shunt that I'm afraid of. For some reason that's easier to wrap my mind around. What is kind of "freaking" me out, is the bowel and bladder incontinence. Granted, this won't really feel like an issue until she's a little older, but I can't imagine teaching my little girl how to cathetarize (etc!) herself, and knowing that's what she'll have to deal with all her life. The teenage years and then later with dating and marriage--that seems like it would be a hard thing to handle. But yet, I guess if it were just one or the other, obviously I'd rather her be able to walk and run, but the sb itself isn't what scares me.

[Barb]

Honestly, that is the biggest issue for us right now (C is 10)

[kali]

yes, its the bladder and bowel issues that are the hardest, trying to find the right solution. that brings me back to a question for barb, is it ok to copy an article from the internet and post if here? I read some things that I found interesting and would love to share with everyone.

[Barb]

Usually people don't mind if it is for educational purposes. You need to put the article in a quote, use the button above that looks like a talking bubble and put a link to the original article and state the organization it comes from if you can :)

[Dodger67]

Or you could just post a link - then there's no copying hassles