It’s only been a year or so…

I had so many well-meaning intentions for this “interweb” space I have… but being a Mom to two girls, sicknesses (all around), trying to hold a full time job among other things – let’s suffice it to say I have never been good at time management.  I am always that milestone on the project plan that gets pushed and eventually turns into an enhancement request that just never gets implemented.

Why am I posting today though? My girls are good. The youngest that inspired me to put my words out to the ether is doing well. She will be having a visit with EI soon to assess her language and communication skills since they are still lagging behind. I also want to have her hips get examined – they are too loose and “poppy” than I think should be OK. Anyhow, my girls are my super heroes. I seriously wish I could spend every breathing moment with them… well OK maybe I need a break in there.. but you get the gist. However they are not why I am writing this. I am writing this about my husband – Jesse Noller.

These last two years have been really trying. He and I have  had our ups and major downs. I have admittedly thought about leaving. Letting his mistress (anything tech) take the lead while I carry on with the girls.  The past two years have been specifically trying because of a large language conference he has been chairing. I have seen this conference take every ounce of energy from him and leave a pretty cranky and tired (among other things) human (I think) in its place.  It seems there is always some fire or some drama that he has to get into and help resolve. There are a lot of folks who do not like him. He is the squeaky wheel when things are just inherently wrong – but he is more than that – he volunteers to fix it. He does this because his vision of community is striking. He was once that quiet nerd in the background trying to figure what his next step would be, now he is strong, verbose and very outspoken about things like education, diversity, an open community. He is holding a flag and working with those to lead these changes. He worked his globules off in creating something where kids can even join and enjoy. He exposed all this work at Pycon 2013.  I was so proud watching his opening keynote (I am already getting teary-eyed thinking about it). I also felt quite guilty. All this yelling and moaning about how I don’t get to spend enough time with him, the girls don’t get to see their Dad, or when they do he is a grumpy mess – all of those conversations I looked back on when I saw all his work unveiled through the number of attendees, the rise in the presence of women, and the best part to me – the kids, I felt quite awe-stricken. So proud. Amazed beyond belief. I wish I had been there to get on stage and hug him – because that is how much emotion he fired up in me

Jesse has grown and evolved in the 10 years I have known him into a very caring, passionate, humane wonderful person. He constantly attributes meeting me into becoming that person, but I think it’s a combination of things and I definitely think being a father has pushed this growth in the direction it has gone. That is why it upsets me so much – that here is he working to make the Python community work together in an environment that is thoughtful and non-hostile, so it can welcome folks who love to build and create from all walks of life, young and old and inspire future growth into a language that may not have been interesting to someone until they saw the community aspects of it. (Holy long run-on sentence, I know) Python, in Jesse’s world is much more than a programming language – based on some blog posts after the con, it’s not just his world anymore. A lot of programmers want to see that world and have been inspired by it. Here is the bittersweet part of that vision though, there are still many members who do not hold that vision – nor do they care to. There were quite a few instances where folks made some really bad choices, some where they actually broke the law– and somehow now this has become his fault. To the point he is getting harassed – not just on twitter or email or some tech forum, but getting calls – phone calls. To me that is a red flag of escalation. Someone(s) is feeling courageous enough not to hide behind a browser and keyboard. Which to me is all sorts of things, but mostly scary. People are mad that he and other staff members created a COC – guidelines on how to carry one’s self and what would not be acceptable. Not only did they create these guidelines, but they carried them through and a person was removed from the con. It’s unfortunate that it had to get to that point, but that is not the fault of the PyCon staff, that is the fault of those making bad choices. It was not like the COC was something kept underwraps, and no one knew what could happen. I am not sure what makes people think they are above such rules or that they are invincible to consequences. Now why Jesse and others, but mostly Jesse, is suffering bad consequences for something with good intentions is beyond all logical thought.

I am writing all of this because I just need to talk it out (yes I am talking as I type this) and understand why people are so venomous, so scary, so willing to attack others when really they should be looking in the mirror. I know Jesse will still try to carry this torch he lit while chairing Pycon, but quite frankly I sometimes wonder if it is worth it.  The ugliness of things tends to be more apparent than the beauty. I hope that can be changed. Good Luck hun.

Related articles

• PyCon’s response to an inappropriate incident on March 17th (pycon.blogspot.com)
• How awesome was PyCon? (mechanicalcat.net)
• Katie Cunningham: PyCon 2013: Young Coders (therealkatie.net)
• My First PyCon (corfield.org)
• PyCon’s Code of Conduct: The Next Step (peak5390.wordpress.com)

This post reminds me that tomorrow starts Advent

“Mem­o­ries are strange things. You don’t quite know where they come from — or why a par­tic­u­lar one is more pow­er­ful than another. They pop up unbid­den — some sub­con­scious trig­ger, a smell, a sound, an event causes them to come to the fore­front of your mind and take over your brain and emotions.

Mem­o­ries, once ingrained, are impos­si­ble to rid your­self of, good or bad. You don’t get to choose which ones fault in, and you don’t get to choose which ones are the most pow­er­ful one attached to a trigger.

Some­times, no mat­ter how much you try, no mat­ter how many new mem­o­ries you try to make to replace, or sub­sume a given one — one mem­ory will always stick. It can be good — or it can be bad. You don’t get to choose. When that mem­ory is a bad one, it doesn’t mat­ter how much you stack on top of it, no mat­ter how much you try to for­get — when it comes to the fore­front, that is what you see, what you feel.

We don’t get to con­trol it. All we can do is try to forge new ones and hope that they are more pow­er­ful, more per­ti­nent and more filled with love and hope than every­thing that came before it, so that even if the mem­ory that comes up is a bad one — a hor­ri­ble one — there’s some­thing warm, lov­ing and car­ing to fall back on and hold on to when we lay awake at night star­ing at the ceil­ing trapped in throes of the past.”

And so begins “A Boys Story” Read the rest at: A Christmas Story

Coincidences and the human need to find a meaning

It has been a long time since my last post. A very long time. This gap highlights my lacking ability to make personal time a priority. It generally goes girls (many tasks), work,  manage the house (many tasks) , manage the budget (getting back in the game), work on mine and my husband’s partnership, other necessities, chores etc.. and if I can fit in “me” time in there somewhere it’s for maybe an hour every couple of weeks – and people wonder why I suck at friendships.

So AJ, how is she?  Still no seizures – which is good. Some things have come up in the last week that have made me concerned and I have brought up to early intervention and will be brought up to her neurologist in December. She will have another EEG when she see’s him to make sure she still has a clean background. The consistent concerns have remained around auditory processing, very mild hypertonia/cp and sensory issues – the plan is the same however – watch her and catalog her progress and report at each major age her milestone accomplishments to see how well she is doing. She has a nurse, a physical therapist, pediatric neurologist and possibly an occupational therapist to help decide how well she is doing and what she needs next to keep her moving forward. I truly believe had I said nothing when she was 3wks, she would not be doing as well as she has been. I believe the monster I saw taking her away from me at the beginning would have never let me see the smile and laugh I see today. I am definitely proud that I have reached that point in my life, and my confidence, where I don’t necessarily give a crap what people necessarily think when I speak – and that I can say or do what needs to be said even if others think I might be crazy.

So…What does all of that have to do with the title of my blog post? Nothing. However the following does.

You may remember a few posts ago where I wrote about me collapsing in the shower with tears streaming down my face pleading to an unknown entity to take away whatever was taking away my little girl. God are you there? Since that time, and since my daughter’s improvement I felt it important to start down the path of going to church. The initial and main reason was so that my oldest, who is going to a catholic/christian elementary school, would have more teachings about Jesus since I knew she wasnt getting that learning experience, she needed, from me. I chose a congregational church because that is what I was baptized as and I prefer their very open and very flexible attitude towards people and religion. It is very much “here is what it says in the bible, here is our interpretation, now go make your own”.

The first Sunday I brought my oldest, something surprising and meaningful happened. One of the nurses who totally stole my heart when I was pregnant in the hospital for the two weeks after the first minor abruption, walked across the parking lot. The crazy thing is that she lives in the same town as me, right around the corner from me (literally) yet I never see her. The church is around 20 – 30 minutes away. Yet I saw her that day. You have no idea how much this person meant to me at the hospital – and I had all the good intentions of saying thank you by either going to the hospital or sending a gift to her and the few others that really made my stay comfortable. However there was my chance – there at church. So that was the 1st thing.

Next.. The pastor of the church had emailed me about a month ago after both my daughters and my husband were baptized at the church (very beautifully) to ask if we would like to become members. Personally, my first reaction was very much of confusion. Wasn’t I already? My daughter is going to Sunday School, I have gone to one function, helped out, offered tithing, been treated and treated others like friends – I just didn’t understand the question. So I asked, and his response was “Think of it like marriage”… so my next thought was “Well, I am not so sure I am ready for that kind of commitment again.” sort of tongue in cheek, sort of not since I am not sure where I (we) will be in a year (another post for another time). So I did what I always do, I googled it. I found that when you become a member, it means you get a vote in the congregation – you have a voice. This, I know is a very important option to have for Jesse and I, so I emailed him back and said “Yes.” A few hours later I got an email from their Director of Christian Education asking if we would like to take part in Advent and play the roles of Mary, Joseph and baby Jesus – Aj of course being the latter.  If you know me and know my dry sense of humor, you know I had to have a good chuckle out of this, and made a few jokes, but at the very same time was extremely humbled to be asked for my family to play those roles. I felt if there is some entity out there (yes I still do question this) this was one way of saying “thank you” for providing me the strength to protect and help my daughter continue to do well, so I said “yes”.

Then today.. a long time friend of my pings me out of no where and asks me if I remember a couple of people from a very long time ago that we knew from a group we belonged to called “EveryDay Angels” (EDA). She happened to notice when she watched a video of my daughter singing in the church choir that she was standing next to the daughter of two people I had known in EDA. These same two people happen to be the pastor (who looks very different now) and his wife (who looked so familiar it was driving me crazy – at least now I can stop staring at her). The three of us were completely blown away – the pastor’s wife and I chatted back and forth via FB for a while and she made me realize I have actually known of her for a very long time, pre-EDA.. meaning when I was in my teens-long-time.

So in summary deciding to go to church has:

• brought me together with the nurse (actually two, her partner as well) that meant so much to me
• is letting me have AJ play an instrumental being in the christian and catholic religion (as well as Jesse and I)
• brought two more people back into my life, and because we couldn’t remember each other – something that happened at the church provided my friend the trigger that brought it all together for us

It is very hard to sit here and not want to over analyze all of this and try to find the hidden meaning to all of this – does this mean someone/thing heard me cry that day in the shower – is that why AJ is doing so well? Is that why these things are happening? It is so very human to try to find connections. We all need to explain away coincidences.. for now I will be happy and amazed, not think too much about it and see where this path is going to take me.

Speaking of happy, here is something to end this with: “Twinkle Toes“

Another year older

Yesterday was my 34th birthday. Friends of mine watched the girls while my husband brought me out for tapas, wine and mini golf. It was a rather romantic date – it felt like we in our twenties again just dating – which was his intention. It was a nice night – rejuvenating in many ways.

I am a little morose though, thinking about my age and seeing that I have yet to carry out some of my goals. My husband keeps trying to remind me that what I am accomplishing, as a mother, is much more important and meaningful – yet it is taking its time sinking in. I want to be in a place where, as my daughters get older, they have a role model. I want them to see an accomplished, strong and independent person, an excellent and present mother – all the while having the career I love.

I want to give them what I didn’t really have – my entire childhood my mother was someone who I planned to never be like (long story). While I loved her, I was always rather disappointed. I don’t want the girls to have that – sure let them be embarrassed as kids usually are by their parents – but let them see the strong, loving and driven people we are.

Come October I will be re-entering school (had to take a leave the last month of my pregnancy) and in September I will be contracting for a web dev company. Yet part of me wants to find something full-time again – perhaps leading a design team where I can work on my goal of becoming a Director.  I know it probably sounds rather selfish given everything going on with my youngest. However, working has always been part of who I am and I have always been able to load balance a bit. It is who I am – the more there is on my plate, the happier I am. I also think, as odd as it might sound, it might give me the perspective I need to watch my youngest in such a way that I can look with less bias and see more clearly what is really going on. You know that whole ” too close to see the forest for the trees” thing I might be experiencing now being so close to the situation. The bit of distraction work can give, might actually be a good thing.

Well I guess I have a few more weeks to figure that out…(the oldest begins school the first week of September and the week after that I should begin consulting again).

For now, I continue to work on AJ’s plan. EI has started their magic, and the second opinion we got from Children’s gave me some direction as where to help her – they were noticing some delays and physical attributes that are sometimes reminiscent of CP. So Friday when EI comes to visit I will ask the nurse to help with some of the other delays they thought they saw, and to get a physical therapist on hand to help AJ loosen up her left side.  Working or not, I am going to work my tookus off getting AJ all the help she needs.

 

I make her smile

This will be a short post – but one I had to type up and share.

A couple of weeks ago, as part of everything we are doing for AJ, we had Early Intervention come and evaluate her. I honestly thought they would tell me she is perfectly fine and go about my day. Instead they found delays in three important development areas which qualified her for their intervention, regardless of her diagnosis.

The three areas are social, cognitive and her communication. Now I have to admit having a bit of an understanding of such things, while I frowned at the idea of her having any delays, I also am cognizant of the fact she is still just 7 weeks old (6 weeks when they did the assessment). As someone close said it to me “Most children either develop more physically or cognitively first- and usually not together.”

I did sit there somewhat dumbfounded over the social and communication areas however.  I get her to smile and talk all the time – there was a time where my husband even said “She only talks for you.” – which is (thankfully) slowly changing.  After their assessment I was questioning myself of what I was really seeing.

However today it was proven. She had her 2 month well visit and her Dr was trying to get her to follow him using lights, red objects, his finger -  but to no avail she ignored him. He was a bit concerned (same thing EI saw) but said we would watch it.  At the same time she was giving him a smile, but he was not convinced it was a social smile – which technically I am OK with, even if it is just the reflex smile – at least she is doing it. He had left the room to get me her report and as I was making faces at her I got her to follow me from one side to the other and smile. So I called the Dr back in – and she did it again a few times, then she gave the biggest smile and started yappering. He was taken aback (positively) and was said ” Well I will take that, that is exactly what we want to see.”

So, I have concluded ” Hot damn, I make her smile!..” My daughters’ smiles are the main medicine that gets me through a long day – it is why I work so hard to keep them from frowning.

House Resolution 298 – Advocate Epilepsy Awareness!

The Epilepsy Foundation of Greater Chicago has drafted a bill, the RAISE Act (Raising Awareness and Insight into Seizures and Epilepsy), and will continue to push for its introduction.  RAISE would make it safer for students, workers and citizens with epilepsy to access emergency care, continue employment, and achieve an education.  The Epilepsy Foundation strongly supports House Resolution 298 as a first step toward the introduction of the RAISE Act that would create a national epilepsy awareness campaign to increase the understanding of epilepsy and seizures in the workplace, schools and communities.

AJ may or may not have epilepsy – however I have come in contact with so many people, who they themselves have epilepsy, or who have family and friends who do, and so many of them children. As you all know I am having conflicts on the spiritual front, but I do sometimes believe things happen for a reason – and this disease was brought to my attention for some reason and thus I feel moved to advocate for those with this disease, or seizure disorders in general – regardless of her outcome.

Remember, in a previous post of mine I mentioned that there are 3 million people afflicted with this disease in the US (50 million globally). This disease is as common as breast cancer, in fact this disease is dated as far back as the 5th century (if not farther) and still has nearly the same stigma now, as it did then. Yes, we may not be burning people at the stake because we think they are possessed by demons, but people with epilepsy are still treated fairly poorly, due to so much that is misunderstood – and the numbers of those afflicted only keep growing, and 1/3 of them never find out why.

Also, sadly, treatments for this disease have not evolved fast enough as people need them to – the blame: the limited funds the foundation receives for research on an annual basis (and it’s about to get worse: http://on.fb.me/p2fDx2 ). So many people learn for what to look for well after the seizures have done damage to the brain. The internet has helped some of this evolution in the amount of knowledge shared – but even once a person knows what to look for – the causes, triggers and even finding the right medicine becomes a challenge and sometimes as (or more) harmful as the seizure itself.

While not trying to sound like a late night commercial that tries relentlessly to pull tears from your tear ducts: I do hope you will follow me and help support this resolution for the millions out there with this awful disease.

The info: (As taken from  Epilepsy Marinhme Facebook page) “The U.S. House of Representatives House Resolution 298 is a bi-partisan resolution to help raise public awareness about epilepsy.  As many of you know, increasing public understanding about epilepsy and seizures is one of the Epilepsy Foundation’s top priorities.  House Resolution 298 is a great first step – strong support for this Resolution will help in the Epilepsy Foundation’s fight to educate everyone about epilepsy and give us a huge boost toward legislation that will help make every American “Seizure Smart”.  Attached are letters for constituents of each state.  Download your state’s letter, edit the capitalized phrases with your personal details, and forward the letter to your Congressional Representative.  Find your Representative’s location information at http://capwiz.com/efa/dbq/officials/” (Epilepsy Marinhme, 1)

I am a small voice, and have a limited readership, but I hope that if you are reading this, you might forward it on and help them make a huge step forward. Thank you!

God are you there?

Last Tuesday, before the rush to ER, I broke down in the shower and cried like I never had before. I have been feeling quite alone in this battle in trying to find out if my daughter is truly sick – being diagnosed with Epilepsy and wondering what her future will look like. I am agnostic – there was a day when I believed in things greater than me – even a bit of the supernatural. However my experiences brought me to truly question any existence beyond what we have here. I rely heavily on scientific proof and this far, obviously nothing has shown me otherwise. I have to be honest and admit that I find worship to be the place for answers when we have none – to make us feel like things will be OK because there is something else at hand. I always feel there is a better way of dealing with things.. being realistic.. but then something turned inside.

I did what a lot of people do when they are in a crisis and have no where else to turn – I directed my voice toward the universe in hopes something out there would hear me. I prayed. I prayed that the truth of AJ’s illness come forth, that she have as normal a life as she can – (in our societies definition of normal) and that I have the strength to be her constant advocate and make the right choices.

Then Wednesday came and she suffered what the drs called a Grand Mal – but after 48 hours of observation they never picked up a seizure. Was this God answering my request? Truly this went through my head. Since then, everyday I am now in constant wonderment and inside me I kept telling my self I needed to talk/write about the experience.

Does this mean if things go for the worst that I will exclaim there is no God – I may, I am human after all.. but I suddenly feel this strong hand on my shoulder and that feeling has to mean something.