Internal Dialogue

I don't know why I'm here right now. I have many cooler things to blog about, like Abby and Deak's recent activities...but instead I'm stuck putting the thoughts I am having down on the screen.

I talk to myself. We all do it, all the time. It's how we learn to regulate our emotions and interact with people effectively. It's relatively healthy, as long as we know the voices we are hearing aren't real, right? I sure hope so.

Random Thought #1

I've recently decided to need to run. I don't know why. I'm not actually sure I can technically get away with calling it running due to the fact that it is pretty much walking. I suck at it, and frankly I kinda hate it. I grew up being told I was slow and ran with an elephant on my back...in a non-sad, real, kind of way. I think the "I'll prove to you what I suck at" mentality comes out in me sometimes, and I have to admit that I do like the way I feel when I'm finished. I feel like I've "stuck" it to the man or something. Whatever.

While running, however, I have the opportunity to think, and seriously I don't think that's really a good thing for me. I already over analyze any piece of information my brain decides to latch itself to. That entrenched tenancy combined with the Jay-z/Tupac influence on the ipod does not produce the most reverent ideas. For example, the other night after running, I let Blair know that I only wanted a third baby when Abby was old enough to take care of it for me - as in like GOOD babysitting age 11/12ish. I really do want another baby, but just not sure I can hold Deak's 26 pounds of butter on one hip while feeding another. Blair was totally down with that idea. So was Abby actually.

Random Thought #2

I am sick of worrying about money. I just don't want to anymore. Blair and I have worked and worked, and tried and tried...and I am so tired. We are in a better position than most of the people in our world, and I refuse to bitch about my string of difficulties concerning money anymore. I have felt strongly lately that it is time (at least for a little while) for me to go back to working full time during the school year. I was recently offered a job at another elementary school, and will be beginning to counsel two schools of kiddos next school year. It wasn't an easy decision; period. Really, is working ever an easy decision? But, it was the right one for my family, and one I will put my heart into. It is not a sad thing; I am lucky to be able to work the same hours as my kids, (being as Deak will be in preschool FOUR days a week next year) and have found two schools who are and will be unbelievable to work with. Many heartfelt feelings have gone into this decision, and I feel hopeful that my family will be taken care of. I just love them too much for them not to be.

Random Thought #3

Sometimes I think parents who have children with specified, researched, special needs are lucky (ie. Downs Syndrome, Turner's Syndrome, Autism). I completely and whole-heartily empathize with their struggles, outcomes, and expectations...but, at least they have a group to belong to. A group of people who can be found in their vicinity. People who can relate and listen and feel for you.

Deak has that with his the Chromosome 18 Registry, but we aren't lucky enough to experience much connectedness with people in our surrounding area. Ring 18 is just so rare. There are only a handful of us who are connected with the Registry. In psychology, we often refer to Maslow's hierarchy of human needs when assessing where our clients/students needs are based. Dr. Maslow has ranked our human need to belong as nearly as important as our primitive based survival needs. We just innately "need" to fit in somewhere. Yes, Deakon is supported and welcomed by all who meet him, but nothing compares to the knowing eye, supportive text, and understanding smile I receive from another parent who has traveled the road Deak and I are on. I also have found that they are the first to offer their service.

We are not given expectations and time lines and weight charts with our Deak. We do not get invited to any special parent groups or activities. He is it. He is paving his own path for his brothers and sisters diagnosed with Ring 18. And, they truly are our family. We love them with as much as we love our own. I have always offered Deakon's medical history to others, and given every freaking resident at Primary Children's (trust me...we've met a lot of students) the opportunity to meet him. I want his face to appear in their minds the next time they hear about a possible diagnosis of Ring 18 Syndrome, and not those awful pictures of precious aborted babies. I want his face to provide hope.

We are not able to go to our conference of chromosome 18 families this year, which has turned out to be a bigger letdown emotionally for me than I expected. That "need" to belong isn't going to get its' annual fill up. It's okay, but I will deeply miss being with my little family and connecting with those who see my Deak as the shining star of our lives. I am so grateful we will be able to go next year.

But, as Frost wrote, and as Deak is doing,...I took the road less traveled by and it has made all the difference.