How has this changed your parenting?

[heartmama]

I am such a different parent than I imagined.

His first two weeks, I remember having a sense of immortality about ds. I could imagine this life ahead of us, picturing him capable and invincible. Picturing myself able to keep it that way.

I see parents all the time who feel this way about their kids. It's normal, but I can't relate. Once we heard ds had multiple heart defects, the reality that something terrible could happen to ds was mapped permanently into my world view. When parents say "Oh, he'll be fine" about a kid hanging from monkey bars, or going alone to get something out of the car, I can't relate. I just stare at them and try to appear like I know what they mean but really, I have no clue. I think "How in god's name do you know that?!".

When ds asks to do something remotely risky, my mind goes something like "Okay. Keep breathing. The worst is possibly about to happen. Fake it and keep smiling. Try not to freak this child out by gasping, screaming, or appearing stricken with terror. Nod and look indifferent. Then, watch him like a hawk from a casual distance, while appearing to be staring at the horizon and enjoying the view. Once you are certain he has survived, try not to applaud, or cheer wildly, because people will stare".

See? This is what I'm talking about.

[pie]

heartmama I want so badly to answer this question but I am still in transition. To be painfully honest, I was very angry the first few weeks after our IEP meeting, when I got my first 'dx.' And my parenting took a nosedive. I was really not being patient or kind as I had been before. It was horrible and selfish.

I have made friends with an IBI teacher, and she has had a positive influence on me as we hang out with our kids in real time. I have taken to really giving Spanky options and explanations and understanding and TIME. I always gave him love but it is more tangible lately.

It is the beginning of my journey and I am not proud of the first few miles but things are looking up.

[khrisday]

I do know what you mean Heartmama. We experienced having a baby with a possibly fatal illness on the heels of having our older son diagnosed with an Autism Spectrum Disorder. I felt like we went from having two perfectly healthy children, to having two children who would never be healthy.
I think that when you have a child who has faced death, you have a much more tangible view of the dangers lurking everywhere. You have been that one in however many statistic, and you know that it happens. I don't know if people who have not had to look at their child and know that they really may die, can really appreciate those feelings. Over time I have come more to terms with it, but when my daughter was young, it really did freak me out.

[pie]

i'm sorry I thought you meant learning they were different in their own ways. I apologize.

[heartmama]

mamapie I don't understand your apology? I thought your post did answer my question.

And it is hard to sort it out when you are just learning about your child's situation. Although it has been years for me, and I still feel as raw and vulnerable about it sometimes as I did in the past.

Khrisday, exactly. Dangers "around every corner". It becomes real, not a story on the news or in the paper to detach from. It's your own story.

[pie]

rereading your post and khris's I thought you meant having kids who had been in danger of death. While Spanky was more than once in labor and during pregnancy that doesn't affect me now. It's the PDD that is hard right now.

[heartmama]

No I didn't mean life threatening.

More just the feeling of vulnerability when you find out something is wrong, whatever it is. Being blind isn't life threatening, but I'm sure it would radically affect some aspects of parenting.

I wondered how different parents here have been changed by their experiences, in terms of how they interact with their child.

You mentioned Spanky having problems at birth?

[khrisday]

That was more about my dd, but with my son I have really stopped taking things for granted (as far as his skills go). I never assume that he will eventually be able to do something. I was chatting with someone the other day and they said something about beng a parent just preparing you for being a grandparent. I just said that I didn't know if I would ever be a grandparent. It's kind of wierd the assumptions that get made in society sometimes. That's where I find myself challenged most. One time we saw a family ride by on bikes, and my dh said it will just be a few more years until that is us. I started crying- my son is 7 and can't ride a bike on the sidewalk because he can't keep control of it unles he has a big wide space. I don't know if that's EVER going to be us, you know?

[pie]

well I had a hard and long pregnancy and labor. I spotted badly at four months, got pneumonia, had premature contractions, blah blah blah. The placenta wasn't nourishing him properly at the end and I had pre eclampsia. I labored for thirty two hours, got a high fever. He had meconium issues and had to go to NICU. He was released to me the next morning though. He cried non stop for the first four months of his life


Khris I know what you mean. I see other little kids his age just doing so much more than he does, and I always used to think, pre dx, that he would catch up. But he really won't ever be like the other kids. It is scary. What if something happens to me and I can't take care of him? That is the worst part of it.

[mom2tess]

Wow - has having DD changed me. I do think I have more patients - but I also am afraid of doing anything (vacations, playdates with friends, birthday parties, etc) - just normal every day stuff that other parents really take for granted.

Just last week - my DD had Girl Scout Camp and we had to leave as she got really sick with a headache and vomiting. Before she got sick - I just had a feeling things weren't going to go well. I need to constantly watch her, while other parents just go about their business while I look like I am being over protective. I try so hard to do "normal" things with her, but it always blows up in my face.

Melinda

[Bestbirths]

Having my son has dramatically changed every aspect of my life. I wouldn't be the person I am today if it wasn't for him. He brings out the very very worst in me, and he brings out the very very best in me. He stretches me farther than I thought I could stretch, and keeps challenging me daily. I have been constantly *forced* to have personal growth in my own life to keep up with his needs. And you know what, it has been a gift, and the biggest blessing of my life to be his Mom. Everything about my lifestyle and parenting has changed for the better and become more postitive because of him.