Trisomymommy

DFR: The book

DFR: The Book

Cate is right.  We have enough material here for a self-help book.  " Oprah, most people don't realize that the secret to life satisfaction is contained in this one simple ratio."

Chapter 1 -- What is a ratio?  Review basic math.

Chapter 2 -- What is delight?  (Provides examples from case studies.)

Chapter 3 -- What is frustration?  (Provides more illustrative examples.)

Chapter 4 -- How to calculate your very own DFR. (Reviews principles from chapters 1, 2, and 3.  Includes easy-to-use worksheets.)

Chapter 5 -- How to increase your DFR. (Additional worksheets.)

Also available in stores and online:

• The DFR Delight-a-Day Calendar, offering value-added solutions for increasing your DFR each and every day (Tuesday, March 6^th:  Go to the Park.)
• Our latest DFR titles, including The New DFR for Bloggers
• The New DFR Software, providing color-coded pie charts for a deeper understanding of DFR principles.
• The Even Newer DFR-Advanced Software, supporting monte carlo simulations to estimate the impact of various life choices, such as going to the park.

Dear colleague

So, as you may have noticed, I've tried to make this blog anonymous.  I've told almost nobody in my real life that I have a blog.  I like the idea of being able to write here without worrying about what my mom will think, or my colleagues.  I think it allows me to be more honest. But I know that people I know read some of the same blogs that I read, and that they just might come across mine at some point.  I once happened upon a colleague's blog.  She made no effort to keep it anonymous and I recognized her immediately. I felt like such a voyeur, especially since the post was about personal medical stuff.  How awkward is that?  Next time I run in to her, do I say, "Soooooo… uhm… good news on that mammogram!" or do I just pretend not to know?  I pretended.  I never told her I'd read it and I never read it again.  The thought of colleagues reading my blog makes me squirm.  So, here's a shout out to anyone who knows me in person and finds my blog.  Please, just let me know.  It might change what I write here, it might not, but give me the choice by letting me know, ok?  And don't go spreading the word.  Let’s make it our little secret, shall we? Maybe I have delusions of grandeur.  It’s not as if many people are so interested in me, or are out searching for blogs about infertility, Down syndrome and the Pump-In-Style (now duly stored).  Seriously, who the hell do I think I am?

.

Part of the reason for my paranoia is that my career feels a little shaky right now.  It’s been a rough few years, as you well know, and I don’t feel like I’ve quite lived up to the expectations they had for me when I was hired.  In the abstract, I know that I’ll land on my feet even if this job doesn’t work out, but it will be a rough transition for me and the family.  We moved 1000 miles for me to take this job. T and I have both made real sacrifices for it, and it’s my job that pays most of the bills.  Blah blah blah, enough ruminating.  There are other jobs, maybe even better ones. It will all work out.

.

I have learned some valuable lessons from my Miss B that I try to use to keep work stress in perspective.  One is that I’m pretty damned resilient.  Another is that events that seem catastrophic at one time can turn out to be real gifts. A third is that there are a lot of important things in life that have nothing to do with work. Actually, I already knew that, but it has become that much more obvious to me since she was born.

.

So, I’m trying to be not anxious.  And what are you up to? How’s the kid(s)?

.

Here’s the thing:  I say I can be honest here because I’m anonymous, as if anonymity frees me from worrying about what people will think.  But as I’ve gotten to know you, dear reader who is not my colleague, I’ve come to care what you think.  So my blogging identity, just like my real life identity, now brings both the rewards and constraints of friendship.  I can’t see you, I don’t know what you sound like or how you smell (good I hope), for all I know you’re just some sort of Turing machine, but you tap into my social brain just like you’re a real live person.  Gee, I hope that isn’t the best compliment you get today.

Still sad

I am still sad.  Not like I was 5 months ago, and not all that often, but sometimes.  One reason that I hesitate to write or talk about it is that I wonder what people will think.  Will it seem like my sadness is a rejection of my daughter?   Some parents don't seem to grieve over this diagnosis as I have.  Are they better parents?  More open-hearted than I am? 

Also, I try not to dwell on this sadness because there is absolutely nothing I can do about her T21. It is a fact that I have to cope with, and the best thing I can do for myself and my daughter is to accept it and move on.   For the most part I have, but occasionally I have these set backs.

One occurred when we were on vacation.  T and I were sitting by a pool and there were these two girls playing there.  They must have been about 9, or somewhere in that wonderful age before teenagery self-consciousness sets in, and they were playing some elaborate game that involved naming categories of things and then their favorite things within those categories and then suddenly racing to the other side of the pool if they agreed, or maybe it was if they disagreed -- I couldn't quite figure out their rules, but whatever.  They had this easy way about them, joking around effortlessly and then suddenly blasting off with a burst of impressive athleticism and looking to T and me to decide the winner if it was close.  They were delightful.  They were what I always pictured our kids would be like.  Yes yes yes, I know that I will also take delight in my Miss B (I already do), and I know that even having the normal number of chromosomes does not always make for delightful kids, but as we were walking back to my parents' house I was overcome with the thought that my daughter will not be like these girls, and I lost it. 

Today I woke up feeling sad and I'm not sure why, but there it is.

And to make things complicated, I get all meta on my feelings.  So while I'm feeling sad, I'm also annoyed at myself for being sad.  Snap out of it self, I say.  Think about how good you have it.  She has no health problems, for instance.  Maybe in the future she will and you'll look back on this time and wonder why you weren't thrilled with every healthy minute.  And I feel sad that I'm sad, because she deserves to be appreciated for how wonderful she is instead of having me cry over her disability. 

So, enough of this.  I've had my little mood and it's time to let it go.  I have some free time while T is out with Miss B, so I need to accomplish something that I can feel good about.  (Besides blogging, blogging doesn't count.)  I believe that the best way to get yourself into a good mood is to pretend that you are in a good mood and just go ahead and do good mood sorts of things. The mood will conform to the behavior, eventually. Here goes.

Edited to add:

It's a few hours later and I'm better.  The cloud seems to have passed. 

Support

One of the gifts that Miss B has already given me is a new appreciation for the value of social support.   In an emailed announcement, we invited almost everyone we know to join us in celebrating her birth and told them about her Down syndrome diagnosis.  I was not prepared for the kindness we would receive.  We didn’t cook for ourselves for almost five weeks.  Colleagues, neighbors, and people we hardly know sent cards, gifts, cd’s and flowers.  Crafty friends knitted sweaters and booties, foody friends fedexed homemade bread and cookies.  Family members lined up to visit and help.   I was often moved to tears (Ok, as I’ve acknowledged, it doesn’t take much.  Damn hormones.) by the welcoming tenderness everyone showed toward Miss B, by the personalized gifts, by the way our visitors would hold her and coo.  It was extraordinary.  It filled me with a strange mix of gratitude for the support as well as regret for past times when I could have offered such support to others but didn’t because I feared being too intrusive.  Now I get it.

Of course that can’t last forever, and nor should it.  In fact, it would have become oppressive had it lasted much longer.   But as the outpouring got all poured out, I started to feel lonely.  I know other new moms that I can talk with, but this situation is so emotionally complicated that I’m not sure I can really connect with them.  So I did what so many others have done – I went to the internet.  I started blogging and I posted on the http://trisomy21online.com/ forum.  I’m not sure where all of this will take me, but I’m grateful for the option. 

In response to my introductory posting at the discussion forum, Jan of http://mauzysmusings.blogspot.com wrote, “Change your log on name...why? Because within a few months or so you will no longer feel like a ‘trisomy mom’ but as a new mommy with a baby that happens to have tri21!”   Jan, thanks for that.  I know you must be right, but it’s hard to imagine.  My previous identity has all but disappeared and Miss B’s identity is still so unformed that Trisomymommy captures all I am right now.  I have no foresight.  Of course this state isn’t permanent, but it feels that way right now.  And it’s not that I’m constantly despairing.  In fact I feel reasonably upbeat most of the time, but my mood is fragile. 

So… when will she start smiling?  I could really use a smile here.