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Special Needs
amajane
member
Why we are different
amajane
member
So when I'm on other boards reading about how other moms are lamenting about their DC's minor health issues or freaking about their DC's not walking or talking by a year I can't help but notice the difference between "us" and "them".
I mean, I just don't freak out anymore. Did I ever freak out? I don't think so. When I found out about Marley's issues I felt shock, grief and anger but I don't think I felt scared. I don't think I ever felt scared. Even when Marley was seizing in my arms last week I wasn't scared...I was just so immensely sad and frustrated.
And I don't really get the sense from the rest of you that you are scared. I sense more frustration, anger and sadness over your situation. I don't hear you ladies write things such as "oh my god, our pedi said that DC might have A, B or C. I'm freaking out. I'm gonna have a heart attack. My world is falling apart!!!"
Are we just?desensitize?to the freak out because we have become so use to the other shoe dropping? Are we stronger than "them"? Is having a SNC a benefit to our character? 'Cause I just don't have the patience for the emotional breakdowns that some of these ladies have on the other boards.
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Re: Why we are different
I could have written this post myself!! Since we started Owen's blog, it has taken on a life of its own, and old friends, new friends near and far have emailed us, called or contacted us. Almost every person I talk to that reads about Owen always says..." how do you do it??" " i could never handle it as well as you?" etc. I get annoyed a bit because I don't see what choice do we have?? Owen is our son and not dealing with his problems is not an option. He has special needs but I don't know how else you are supposed to handle it...we didn't cause it and I just feel like get on with it...I can't sit any cry everyday about it. It is what it is.
Anyways, I feel like we are sad about certain things that Owen will never experience and nervous for his future but not scared. I do feel like we are desensitized. I feel like I can't remember life when SMA wasn't an everyday word, and something that impacts every decision we make.
Thanks for writing this because it makes me feel like there are people who can understand what I feel. We are a strong group of ladies and I am so glad to have you all!
I definately think it comes down to what your circumstances are. If you don't have much to worry about with DC, then little things are going to get you going. My cousin is always saying her kid is a terrible eater both junk-food wise and quantity. But I've never seen her actually pay attention to feeding her on a schedule or giving her nutritious choices. Last week her kid had french fries for lunch. Now, I'm sure that happens to others, but you aren't going to complain about it and blame it on the kid. I guess, because DD has feeding issues that kills me! It's a completely fixable problem for my cousin but she refuses to take responsibility for it.
This is one of the reasons why I love this board. Trying to get into the 12-24 mo board is just too tough with people talking about their feeding/development issues. I just want to be like "get a clue!" Though I'm sure for them it seems earth shattering they have no idea what we'd give to be able to do things that 'normal' people do with their kids. It's something that seems will be with us forever. DD is 19 mo and I'm still not over her birth/condition. I mean, I've accepted the situation, but it kills me to know that I can't fix it. Isn't that the job of parents? And we can't do anything but try to protect them and keep them safe. I think this is why I find it hard to relate on other boards.
After we found out about DS's condition. I was saddened by it. I was never distraught though. I know that we will take things as they come. I still feel a bit depressed when thinking about how different our life will be now with a SN child, and I still grieve the hopes and dreams that I used ot have for our family. But we will just cope and move on and do the best we can to make our lives as happy as possible.
After DS was diagnosed, I got a card from my DH's Aunt and Uncle. They said that they were devastated by our news. I remember that word making me angry. First of all...what right do they have to be devastated? DS's condition will never affect them whatsoever (we are not that close to them). And secondly...we are not devastated (saddened? yes, but devastated? no), so why are they? That word still irks me to this day. I have a wonderful, happy, affectionate son. I don't know what they think we are lacking at this point in time?
My son has severe language disorder. I get so tired of people telling me he will catch up on his own, or that x person did not speak until they were 5 - Don't worry. It has taken a huge effort on so many levels to get Trevor to where he is now, and he is still about 1-2 years behind in language development. He will not simply catch up.
I understand our frustration. I love your blog by the way and think your daughter is adorable.
I agree with you. Sometimes I think "oh thats not a problem, you want to hear about a problem?" I usually try to keep my mouth shut though, because I know when I do say something, it can come off wrong.
I have a friend whose son had a cyst on his brain and when they found out, the drs told her he may need Brain Surgery. She knew Brain surgery was a possibility for Ben becuase of his Brain Bleeds. She asked me how I lived with that hanging over my head. Now, she has a preemie with extensive issues, spent 50 days on a vent, 100 days in the hospital. She KNOWS what it is like to have health concerns, and still she didn't know how to deal at first. I told her, the same way you handled everything with him. You just do it. You do what he needs, and take care of him. He ended up needing the surgery and is doing great now!
On the other hand, my brother and sil have twin boys, 4 months older then Ben. It seems as though nothing bothers them, they just roll with whatever. I spoke to my brother yesterday, who said they won't be visiting anytime soon because both boys had RSV a month ago and they think they have it again. They were not planning on taking them to the dr, figuring it was just a bad cold. I WISH I could be that relaxed, and say, he is fine, he just needs tylenol and rest. It makes me happy for them, that they don't have the things running through their heads that I have.
If Ben had any signs of lung/breathing trouble we would be on the way to the pulmonologist FAST. He has a compromised lung, and the 1st hint something is off, and he goes to the dr.
Its like living on a different planet than the moms on the 6 to 12 month board. Sometimes when I'm particularly grouchy, I feel like posting about Isaac "my baby isn't crawling/walking/sitting/standing/pulling up at such and such months" post., and say don't worry! I think it might really help them put things into perspective on there.
I don't worry about the little things of right now, I'm too busy worrying about the crazy unknown future that we have. Its like simmonsbaby said, what choice do we have? I do get frustrated with Isaac's condition. Its not like we'd choose not to have our babies or to change them - but the effing conditions they have just suck.
I hate him having something that has no cure. Because I want to fix things, everyone wants to fix things. Not that my baby is broken, but I sure would love the day to come where a cure is found for all of this stuff. In the meantime, a runny nose or the fact that he hasn't pooped in 3 days isn't going to bother me.
I saw some of the other post on the 6-12 board. I just tell myself that they have healthy children so when something pops up they are scared.
I too don't think I was scared when I found out about Cash, it was more like what in the heck is going on....FIX IT!!! I was more angry, than ever being scared. I am not going to lie, I was also extremly down, but felt down in my luck. I became immune to all of this before Cash, when my oldest now 4 was different than everyone else due to FTT and severe aspiration issues. So as people posted about their feeding schedules, I only wished that I could have it so simply, instead of thickening everything even stage 1 foods, just to keep him from chocking, puking or getting pneumonia.
Like many have agreed we have to go on. I get so frustrated when my friends are like you are so strong, it's not strong....it's survival. What choice do we have. We didn't choose to have these beautiful children with special needs, but we were choosen to have them! We are fighters and altough we may be desensitized we actually rejoice in our struggles and get to completely enjoy the little moments and milestones. Milestones are often forgotten are used in terms of months. Were a group of women that know it took our DC 8months and 1 day to get a tooth, to sit up or to roll over!!
I feel blessed to be apart of a great group, where I don't feel so all alone!!
Although we are not living with our son's special needs yet, I can totally relate to this sentiment. I really hate when people tell us they are sorry, or that they feel "terrible," etc. My response (usually in my head, lol) is don't feel terrible, we don't even feel terrible. I just wish that people could be happy for us because we are having a baby without adding the big "But" to the end. (you know, "you are having a baby, BUT . . .").
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I frequent the 0 - 6 months board because I have gotten to know the mothers during and while posting on the trimester boards. When I do read some of their "frustrations", I secretly wish I had their frustrations.
I think my son has made me a better, more patient, more vocal mother. Certain things just don't matter to me (e.g. middle of the night crying sessions) and just roll off my back. In fact, when my son cries in the middle of the night, it means to me that he has the ability to cry and hopefully the ability to speak one day.
It is an "us" vs. "them" situation, but so is something meaningless like WAHMs vs. SAHMs (shouldn't matter where you are when your kids are awake, as long as your a decent mother and not abusing them). I try to take the opportunity to help moms count their blessings any opportunity I get. Your husband doesn't change diapers, imagine if you were a single mom. Your baby cries at 3 am, imagine if your baby passed away and wasn't there to cry.
Being a SN mom has put things in perspective, but I'm always in the mindset of being inclusive. Being a mom is what unites all of us.
TIA.
I might have a few more anxiety issues than some but sometimes I do freak out! When Drake was born we were told that he had 2 heart defects - an ASD and a VSD but they weren't an issue because he wasn't symptomatic then we were told that they had probably closed because nobody has heard a murmur in quite a while. When we went to the ENT on Tues he said that he could hear a murmur and he's "a sucky cardiologist". I can't get it out of my mind now!
I do get sick of telling people not to be sorry all of the time. My new response is "He's fine.". And for the people that say what amazing parents we are (something that does flatter a little but mostly frustrates me) I simply tell them that we are just taking care of our son.
I don't think that we will ever get the message to people that don't have our worries. I tell my friends that I'm happy they don't fully understand because that means they haven't gone through it!
I could have written that response meghans30. My ds has significant speech delays and I keep hearing all these stories about so and so didn't talk until they were 5, etc etc, and that he will catch up.
With our 10 month old dd, we had a conference the other day with her teachers and they were concerned about some of her minor delays according to the 12 month old evaluation of her. No kidding, she is going to be delayed if you compare her to a 12 month old. My dd has been crawling since she was 8 months, my ds didn't crawl until he was a year. She just pulled herself up to stand yesterday, our ds didn't do that until well after his first birthday.
If she was our first, I would have freaked out. But, after our issues with ds, things don't get to us as much.