Just a little ...i dont know....down i guess....

[XoBLoNDiE85]

Hey ! I dont know what is wrong with me lately (past couple weeks or so) im just soooooo *itchy! Its even annoying me. But anyway asides from me being a brat Im kinda down about Hannah not walking. The weird thing is that I had totally come to terms with the whole situation i had thought. The doctors say she will be delayed with walking prob til 2yrs or so and nothing is for sure as we all know and i was TOTALLY fine. Now all my friends babies (around hannahs age) are taking their first steps and its breaking my heart even tho i know walking doesnt make it or break it! Did anyone else go thru this andhow did you deal with it?

[Barb]

Wish I could say something to make it better but there just isn't....it is hard and it SUCKS when all the other kids start to pass milestones and Hannah is just not there yet....you want to be the better, kinder gentler zen soul about it but it just eats at ya. Just know you are not alone. We have all been through it and continue to go through it as milestones come and go. I do really love this and it has helped me in times like this:

http://spinabifidaconnection.com/showthread.php?t=207

[angel]

I did a little bit. When my son was a baby they told me he would walk like me using crutches if he could walk at all. I know, having been through life with SB myself, that it wasn't that big a deal but I still had to deal with the emotion of it all. I worked his legs and thought if he can't walk without aid I am gonna make sure his legs are as strong as they can be. The reason I did that is because I firmly believe that being put in braces at 18 months (I was in them from 18 months to 6 years old) and not having to use my leg muscles for anything that I missed out on major muscle development. I think that is the reason for a lot of things but that is a whole other subject.
I hoped for first steps but didn't know if they would ever come (with or without crutches) he finally started walking at 13 months. It happened out of the blue one day he couldn't the next day he started.
If he hadn't ever walked at all I have no doubt I would have had emotions to deal with about it. I have emotions to deal with about a lot of things he goes through and I get ashamed of myself because I have SB and I know none of this is the end of the world. But as a mom you just can't help it sometimes no matter what your head tells you. Your heart has to go through it's own process.

Angel

[kellymumof4]

I have just been diagnosed with post-natal depression 12 months after i gave birth to my twins!! I,ve felt really down for a long time over ruby.
It is so hard as her twin sister is reaching all the milestones she has been sitting up, crawling for some time now and has taken a first step and i look at ruby staring at her and i feel sad for her. They are identical twins so its kinda strange that one twin has SB and one doesnt. I have blamed myself in the past as i have a 4 year old with spina bifida and i beat myself up that i should have taken folic acid in the first 4 weeks of pregnancy (the twins were not planned i was on the contraceptive pill but had antibiotics) As soon as i found out i started taking folic acid but i didnt realise i should have been on a high dose as i,d had a child born with SBO but i couldn,t get in to see a midwife until 12 weeks of pregnancy. But i feel blessed to have such beautiful kids and i just have to move on from it.
I am now on anti-depressant tablets for the next 6 months it was hard to sit in front of a doctor and admit how i felt and how i blamed myself for it but i,m feeling much better now and i,m focusing on ruby just getting upper body strength her abs are so strong let me tell you!! so that of she is a wheelchair user she has that strength to get in and out of her chair etc etc. I dont think she will give up without a fight either way!!
Just being there for your child emotionally and physically is the best part of being a mum!!

[cadon's mum]

have also been feeling a little down lately, cadon's shunt revision really frightened me, it's now hit home how unpredictable having a child with sb is. I really want to book a family holiday as the kids will be breaking up from school this week for the summer but i'm just too frightened to take him away and i really can't imagine ever having the courage to take him out of the country unless his neurosurgeon fancies a holiday too!! I keep telling myself that i knew about all of these things before i had him and that it's something we've just got to deal with but i didn't bank on just how hard it's going to be. I'm really struggling to deal with my emotions at the moment.I

[Barb]

This is to all of you in the first few years...to me, having a child with special needs is a lot like experiencing a death. It is the death of a dream of many sorts. You grieve and feel like you should be over it but the reality is that something will remind you of that death at the most unpredictable of times and send you :kleenex: in a corner. For me, it has always been at the oddest of times and over something so insignificant.

Cadon's mum-that fear doesn't always go away but you can't let it rule your life. I know, it is darn scary! I was freaking out a few weeks ago with Carters shunt revision so afraid of the domino effect that can occur from that.

here are some of my deep, dark mom secrets-

I hate birthdays and I hate the guilt of hating birthdays...http://spinabifidaconnection.com/showthread.php?t=366

I am an emotional wreck AFTER surgeries...for some reason I can hold it together before and during the hospital stay but when I come home, I lose it. I need at least a week after a hospital stay to process and decompress.

I can gather a hospital bag including medical records and films in less than 3 minutes. I have everything packed and ready. Seen Miracle in Lane 2, yet? The shunt scene could have been shot at my house.

Don't be so hard on yourself. The first year is the hardest but that doesn't mean after the first year *poof* it is all better. It is a long long grieving process and you have to allow yourself to go through it and not feel bad about that.

You also HAVE to find something that is just about YOU! You have to still find yourself in all this mess. Go to the gym alone, take a class, but doing something just for you!

Another thing, you should look into if you are experiencing signs of adrenal fatigue. It is hard not to with our lives.

[dahliafaolan]

Oh goodness I loved that movie! I remember watching it when it came out and just crying my eyes out. I was 15 years old and it was the first time I had ever seen Spina Bifida mentioned in any form of media. I remember growing up and telling people that I had Spina Bifida and people just responding with blank stares. After that movie, I felt like what I had wasn't such a deep dark thing to be kept a secret from the world. Not that I ever thought that my disability was shameful or anything like that, but rather that the rest of the world might have. I loved that the movie showed Frankie Muniz's character both as a normal everyday little boy, a brave survivor, and a kid just trying his best to deal with the things that the world dealt him. I liked that it showed some of the medical issues of dealing with Spina Bifida. Thanks Barb! Now I'm going to have to go find the movie again. lol

[bcain]

I am afraid to travel long distances from home. What if it's a poopy day, and I don't have enough diapers, and what if she gets another UTI while we're away from home. I don't want to have her get overtired and get sick. She won't sleep unless she's in her crib, or on her belly. We traveled to a children's museum 2hrs away. She did great until the trip home. She screams like someone is pinching her. She wants out of the carseat. The next day she had cloudy urine, and a cold too.

I'm hating the uncertainty of it all as well. There that's all my worry....sorry!

Upside is I love taking care of her. I'm way too busy with her schedule to be missing work now. [ Although I regularly check the employment ads. ] She makes me smile and fill with love, even when I'm exhausted. She's real good at taking her meds too. And I'm grateful for this site, you are all great here.

[cadon's mum]

Thanks barb for your words of encouragement,yes your right i think i have sort of lost myself, things have been pretty hectic round here lately, my two older children connor & kiera both start new schools in september so we've had leavers party's, induction days and allsorts. My other son keegan is having problems at school, he is a little speech delayed and has a squint in both eyes which makes reading a problem as he refuses to wear his glasses, we are waiting for surgery hopefully in the next couple of weeks. Topped with cadon's problems i suppose it's all just got too much.(definatley need a holiday!!!) And yes i think that i do need to do something just for me i have been so busy being mum & wife i've forgotton about just being lorraine. thanks again. xx

[valerie]

Hi all, i know exactly what you all mean, one day you feel like you are dealing with things ok & the next its a low day again. Myself & my husband sat in bed on tuesday night after Cians 1st birthday party & just talked about the when he was born, the shock etc & cant believe that we are here today i suppose in a better place yes cause the initial shock is over but the milestones are so very hard to accept. I keep thinking cian should be crawling if not walking by now & he would be so cute running around & it breaks my heart & worrying about not giving him lots of treats becuase of weight because he isnt mobile. It is such a complicated disability, i honestly think not thinking too far ahead has helped me a lot because up to a month or so again, my head was racing about "what ifs" thinking of things that might not ever happen so i am really trying to take one day at a time & enjoy him, thats not to say i wont break down again tomorrow but making the most of the good days. I have also started back exercising (badly needed!!) twice a week & i feel that 1 hour is my time. it has taken a year for me to get up & do it but you need a break to just be you again. i felt the sb has taken over our lives completely & the old me went. I dont think i will ever be me again as before i was carefree etc whereas now i have worries etc but i suppose when you become a parent for the firstime anyway, your carefreeness goes anyway regardless of the sb. I think ye are all great anyway & chin up xxxx

[angel]

I am a parent and my child has SBO he is fully mobile although they told me he would not be. I know how you feel to a point. I was so prepaired for this because I have lived with SB Myleo level L4/L5. None of what he has gone through was a surprise to me when I was told what was affected I knew what could lay ahead of him. What was a surprise to me was the fact that I know first hand that life with SB isn't so bad and I still got upset over these things. Watching your child go through it is a thousand times more painful than going through it yourself. My parents and grandparents suffered way more than I ever did and I can assure you of that.
From someone who has lived with it I can tell you that it isn't that horrible. We do things differently but if you encourage your child and treat them as you would any other child and not like a child with a disability they will grow up and more than likely lead independent fullfilling lives.
The what if's will drive you to insanity if you let them. My advice in dealing with them myself and with my son is deal with what is in front of you now. You nor anyone else can predict what will happen in the future. No one ever predicted anything correctly for me. With the exception of my family I dont' think anyone ever really expected much from me. I showed everyone that just because I walk with crutches doesn't mean anything!! It is a small detail in the much larger picture that is me.
As for my son I was told he would walk on crutches just like me. He doesn't he is fully mobile. I was told he would never potty train. He has a neurogenic bladder. With years and years of work we have come a long way in controling that. I found out he is supposed to be much shorter than he should be when fully grown (i still am waiting to see on that one because doctors are wrong in their predictions a lot of the time).
After his first appointment at 2 weeks old with his neuro I was in tears, it is just like barb said it is the death of the image i had in my head before he was born. I didn't know about his SBO until he was born. My mom told me in the car on the way home they are not always right. You have to take it day by day and you just have to let him do everything he can and go from there.

Hope that helps a little.

Angel

[XoBLoNDiE85]

Yes Angel that helped.Im glad to hear that it is harder on the parents than the child! I hate the fact that I can't fix her or help her but knowing it worse in me helps.:goodpost:

[joybell322]

I agree that it's harder on the parents! I'd like to say it gets easier, and I guess it does in some respects in that so many milestones are reached in the first 3-4 years. But a couple of months ago, when Liz asked me to teach her to stand on her tip toes, I nearly lost all sanity! I've wished many times that I could take it all for her. But I kept it together long enough to calmly tell her that her feet didn't work like other kids, but that God made her exactly the way He wanted her to be and that I love her just like she is--then I went to my room & cried for about an hour!

Funny thing is, she accepted it & when someone asked her about later, she just said "I can't do that. It's just the way God made me!" --definitely harder on the parents!

[angel]

I agree that it's harder on the parents! I'd like to say it gets easier, and I guess it does in some respects in that so many milestones are reached in the first 3-4 years. But a couple of months ago, when Liz asked me to teach her to stand on her tip toes, I nearly lost all sanity! I've wished many times that I could take it all for her. But I kept it together long enough to calmly tell her that her feet didn't work like other kids, but that God made her exactly the way He wanted her to be and that I love her just like she is--then I went to my room & cried for about an hour!

Funny thing is, she accepted it & when someone asked her about later, she just said "I can't do that. It's just the way God made me!" --definitely harder on the parents!

I don't know if this will make any sense or not but I have also wished many many times that it would just be put on me. I have it already I have been there and done it and I would take everything for him if i could. I would go through it for him in a heartbeat and do it with a smile.
Acceptance of yourself is the best peace you could ask for. Weather or not you have a disability being able to accept yourself for who you are and being comfortable with it is a peace of mind that no one or nothing can ever take away from you.
I don't wish I was "normal" I am ok with me how I am. I don't need to be like "them" it isn't necessary for me to feel good about myself. I don't feel as i have missed anything. Sounds like she is headed in a very positive direction.

Angel