Wednesday, May 14, 2008

Congratulations -- It's a New Baby Blog!

I've been realizing how many of my day-to-day situations and posting ideas on my other blog have to do with my youngest son, Junior. But I don't think a lot of that stuff belongs over there. So, I have decided to create this separate blog, featuring him. I do envision occasional overlap, and some posts might be cross-linked, but this is a separate endeavor with a different purpose and audience. This is where I will write about my son and my experiences in just daily being his mom.

There are just so many things I could say about Junior. And since life with him tends to get a bit blurry at times, I really want to use this blog as a way to record some events, situations, milestones, stories. There's a bit of that third child syndrome going on (you know, where the first child gets a photo of every single expression/outfit/event/month/new food and things are sterilized and the baby book is complete, but the third child gets a photo at birth and again on the first day of school, you pull hairs off the old jellybean he found on the ground and let him eat it, and there's more of a baby pamphlet?) but mainly I'm just too worn out to do much. (Why do I find time for that other blog? Well, after all these years of being a SAHM focused on the kids and staving off Brain Fog, I'm selfishly enjoying my new bloggy toy; it's stimulating & creative & makes me chuckle.) But I still don't want to forget those Junior moments.

The other motivation I have for doing this blog is that the internet has been a major lifesaver for me since Junior came into our lives. When I learned he had a diagnosis and a disability, I could literally find nothing in our local library but one small paragraph (hopelessly outdated and dismal) about microcephaly in a medical encyclopedia. But the internet was a veritable goldmine. I found great information online, but the vast majority of truly helpful information I got was from other parents! Parents who also happened to be online.

Through the internet I found support groups and made some really great friends (hi, Moles!) that I communicate with regularly. And one of the things I have really valued about those connections is catching glimpses into their daily lives. It's less about comparisons (profound/mild, easier/harder, worse/better) though, and more about that sense that we are all on this journey together. We are a village, and I have found it really does take one!

I am always curious about what other peoples' lives LOOK like, struggles & triumphs they have, how they live. This is true for me across the board (and one reason I love to read blogs & books), but it is particularly true of those lives affected by disability. What are the things I need to know or watch for? How do other people deal with sibling issues or behavior problems or insomnia? What does this term mean? Where do you find that resource? And, yes, even How do you get permanent marker off the wall?

And when I say I'm curious about how those other lives look, I mean that on a very literal level, too. I know Junior's head is small. I mean, it really is off-the-charts small. But what does that look like? What might he look like as a full-grown adult? (I wondered the same thing before he was born!) Statistically speaking, most of us don't run into others with similar diagnoses very often. And we don't want to be rude and stare or ask questions when we do. But it's new. It's different. I'm curious! At the risk of sounding superficial, I found (and continue to find) pictures to be an important part of my journey. Obviously, a photo, just like a label, provides little information about the person within....but I gather each of those photos and labels up like acorns, and add them to my stores. The individual relationships, stories, and experiences fill the larder much more substantively, but I continue to gather every stray bit I see.

Finally, one thing I was very concerned with in starting a blog was privacy. I want to feel at least somewhat anonymous, mainly to protect my kids. I don't want their teachers or friends' parents or the checkout guy making inferences about us based on my posts, and of course I don't want my kids to feel embarrassed or exploited or ashamed. I am certainly not looking for criticism, or debates about issues, or "Trolls", or just any more worries, period! I've even debated whether or not to post their real pictures; I don't want people to target my kids.

But here's the thing. I want to share specific bits and pieces about our experiences with Junior. I want to give back a bit of what others have given to me; I want to give a glimpse of our life & sprinkle around some acorns to those who are foraging. I want to post pictures of him. I want him to become more real -- more approachable (less scary?) -- to others, literally putting a face to an amazing little person. I even want to use his actual name. As he is learning to identify letters and sign and write, HIS letters are the most important. His name has been the key to many of his exciting "firsts" in school. I want to acknowledge and remember all these things.

So, here we are, teetering on the top of this bloggy precipice. I'm going to walk along it a bit, and then I plan to go on over.

I would like to tell you a little about my son. I would like to give you a little peek into our life.

It might not be anything like your life....but then again, it might be.

Please be gentle with us.


Leona said...

THANK you Thank you for the beautiful golden acorn of your blog entries! Like you, I have been a forager for info since I first began googling microcephaly post diagnosis of my son, who is now 11 months old. As you well know, this is a scary, confusing time and I am so desperately trying to find links to real people who know what this new world of ours might look like. I am going to buy your recommended books immediately. I just started my own blog:
and I'm feeling it's the beginning of therapy. Thank you again for sharing your reality with your beautiful son and his siblings. - Leona

Fraggle said...

I'm so glad I stumbled on your blog,my son robin has microcephaly I just posted about microcephaly awareness day which is the 30th September.
I blog on wordpress
My son robin is 12 and is doing amazing.
It has been a two year old has epilepsy and autistic traits and a character.

Fraggle x