Monday, March 9, 2009

Copying Coping

I've mentioned in past posts that through ABR I have met some really great moms to other kids with CP, right? And in particular, I have had the good fortune to spend some time with one such mom named Katy, who goes by the name Bird on her blog, yes? Well, as I have done in the past, I am totally freeloading off one of Katy's recent posts on coping when you find out your child is going to be disabled.

Normally, I may feel a little bad about totally mooching off her post idea (not that the rest of my posts are so spectacularly original or anything), but, you know, it's late, I'm tired, I am long overdue to post, it is a great topic, and Katy herself was inspired to write it after reading a post from Melanie (another awesome mom I've met through ABR).

Katy writes the following about her son Charlie:

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won't see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won't get to know the Charlie that I know.

This is exactly how I feel about Fletcher, at least the vast majority of the time. Thanks, Katy, for giving me the words and also the incentive to post them (amazing how I find cut-and-paste posting is so much less intimidating than, I don't know, completely original thought).

I also can relate to the part in Katy's post where she wonders if her past experiences were a way of God preparing her to be a mom to a child with special needs. I have no doubt that is what happened to me. Unlike Katy, I didn't have any prior experience with kids with special needs, volunteering, or really even praying regularly for that matter (all three of those have increased tenfold as a result of Fletcher, though). Instead, I think I was prepared by enduring isolating circumstances.

One of the toughest things I think moms of children with special needs face is a sense of isolation. Not many people can relate to what you are going through, and, afraid they will say the wrong thing, people don't really talk about it (and I don't blame them, I was one of them, once). My version of parenthood is so diametrically opposed to the "typical" parent experience that it becomes hard to relate to other moms at times. This is nothing new for me, however.

Nothing about Fletcher, from his conception, to his birth, to his homecoming, etc, etc has been typical. It took us two years and four IVF cycles just to conceive Fletcher (and even the cause of our infertility and the cycles themselves were atypical... we were outliers of the misfits!). Then I develop a condition that only half of one percent of pregnant women get. Then Fletcher is born so soon... and you know the rest. I don't recount this here to garner sympathy, rather I am trying illustrate the point that I have gotten plenty of experience of being "not normal" when it comes to children, and I really feel like it has prepared me to have a child that isn't like the others. Just another way perspective changes everything.


Jessica said...

i love reading these posts. Because you all are the parents I can relate to. Normal is such a subjective term and the experiences of you, Katy, and Melanie, are so similar to ours... that it seems normal, wonderful, and part of the process to me. We had some friends come over with their little kids ages 4-7. and they were completely crazy and wild and destructive with so much energy. Robert and I shared a laugh and thought " that normal?" Whatever Paxson is doing when he is that age, will be normal and god-willing just right for our family.

Bird said...

Hey, Erin, glad you related to it. Also I think it's awesome that you seemed to totally get what I was trying to say about past experiences--a lot of times that stuff comes out all funky.

And what Jessica wrote right there? Totally true for me too. Our normal is just different that most other people's.

AshleyS said...

Not much to say, just that I'm totally feelin' you and Bird on these posts . . .

Melanie said...

Hey Erin! Katy does indeed have a way with her words. That's why I copied her too in a post I did later!! Great minds think alike eh?! Too bad I can't put my thoughts into good words like she does! She said exactly what I meant. :)

Ellen said...

I identified with Katy's post a lot, too.

I am sorry to hear about everything you went through to get Fletcher. That is a whole different kind of hell.

I wish I'd had a blog when Max was younger, because connecting with you and other moms has really made life as the parent of a special needs kids a lot less lonely. I have good friends, but they don't always understand.

So, glad to know you!!!

Angela said...

I wanted to ask you to send me an email at so I can send you an invite to read my blog! I have gone “invite only” for the time being!