Monday, April 14, 2008

Pull up a chair, get comfy, you could be here awhile!

I usually start the day in the same manner as of late. By as of late I mean , ever since I started this blogging obsession. Did I say obsession, I meant thing, blogging thing. Anyway, I usually check Zoey's special little "friends". See what their day had been like. Find out if I need to say any extra prayers in the shower. Yes, shower. I do my best praying and thinking in the shower. One, it is the only place I get maybe 10 minutes of solitude and two, I think it is a place we are most exposed,no pun intended, to face some of our rawest of emotions. There have been two specific times over the last year that Mark has found me on the shower floor in the midst of what I am sure he thought was an absolute breakdown. It probably was one of sorts. A type of breakdown  where you are crying and no sound comes out. Some of you unfortunately know exactly what I am talking about. Well anyhow, when I check on her friends I am also checking on the families of these incredible children and specifically , the moms. Today I checked on our buddy Sam. He is doing so good. Taking steps and for me to see that, it is nothing short of magical. His moms name is Rae and I KNOW a higher power led me to her weeks ago. I know it. Rae posted about herself today and about a girls night out she just had. I responded to her with some sort of sarcasm of  course but to be honest I did have a tiny tinge of jealousy. Not that she was able to go out but WHO she went out with. They were two friends of hers who have children with Down syndrome and not just children with Down syndrome but children with Down syndrome AND medical issues. How great is that?  What I would not sometimes give to have that. Let me clarify if I have confused you by my random somewhat convoluted way of writing. Not jealous of the medical issue stuff. I am talking  about a few friends who can totally relate to that place you have found yourself in. Strange thing to be envious of , I know. But still a little envious. Now, all my beautiful friends who read this,do not be offended. I love you all dearly , however and there is a however, as much as you try to understand and I in fact DO NOT want you to have to EVER understand, try as you might you could never understand this place. I recently said to someone that I equate myself to an island , surrounded by water and trying oh so hard to keep my head above sea level. When we found out we were going to probably have a baby with Down syndrome we were told of numerous families in town with T21 children. They surely could be a great source of support. But when Zoey came with all her medical issues I felt that I didn't even have things in common with them.We became a sub category of a sub category. That is not to take anything away from those children and families. I am sure one day they will be of invaluable help but right in this moment I feel a kindred spirit with those who have spent a vast amount of  their days just trying to figure out how to keep these kids alive. I know it sounds harsh but it is our reality. We must face that reality daily. So instead of people within arms reach , I have found this comforting community online. It enables me to feel not so alone. It allows me to at least tread water for the time being without being totally submerged underwater.My head remains temporarily above sea level. I had a incredible deacon ,really a dear friend, from our parish who taught me about a thing called "grace period". He described it as that time right after some life altering event has taking place, perhaps a tragedy of sorts,where you are surrounded by the grace of people who love and support you. Before long, because of necessity, their lives have got to get back to their normal. The constant company and phone calls and support becomes less and less. Not because they don't love you , just because it is how it has to be. So then there you are and you want to scream " Hey, remember me, I am still here, here I am, still in this place." So often I wish I had a couple of friends like Rae. They wouldn't replace the great ones I have , they would simply just fill this little place that I often feel to still be in.


Anna said...

I love your blog. Found you weeks ago at IS website. Fell in love instantly and read yours and another little ones page with my cup of Java each am and sometimes even check in in the eves to see whats new. Never too long!! Wish I lived closer to give you lots of hugs and TLC. Under His Wings, Anna

Reagan Leigh said...

It's funny you should mention that, because I also pray in the shower for all of the IS kids/parents I've come to know. And in a way I think you already have friends who can relate to what you're going through. Sure, they are online, but friends just the same. Take care and you're in our prayers!!

Carey said...

I so wish I could go on a girls night out like that. How about we all save our pennies, and all of us mom's connected online meet at a spa someday! Wouldn't that be fantastic! Yeah, that's the DREAM BIG in me! hehe ... and BTW I just love the praying in the shower! Great idea!

PWSMommy said...

Oh how I understand... Our geneticist told me that my chances of finding another child like Brianna were about 1 in 2 million. I can find lots of parents dealing with spina bifida. And I can find lots of parents dealing with prader willi syndrome. But both? I haven't found one yet. The Dr (who works in two countries) hasn't either.

it's very alone, very lonely, this place.

And yes - I pray in the shower/bath tub too!! :)