Friday, October 16, 2015

Special Needs

There are a whole hell of a lot of things that I have learned since becoming a mother.

One of those things is that I am glad that I did not have expectations about what my child would be like. This turned out to be a good thing since I never would have guessed that my child would have Epilepsy.

Although I am almost always able to put things in perspective and appreciate the fact that Shrimpy's Epilepsy isn't severe, is well managed, and hasn't caused any delays as far as we can tell, sometimes I don't want to be reasonable about it.

Sometimes I wonder what it would have been like to have been typical first-time parents- freaking out about little things and having sleep as the biggest worry. I also dream about what it would have been like to have had two weeks off with Broom and Shrimpy, getting to know one another and letting my body recover from birth.

Instead I was on my feet within the hospital and lost a lot of blood, healed badly, had edema on my feet and hands, a bout with depression, PTSD and nightmares. Instead, I kept my baby within eyesight for longer than I care to admit- first in person, then with a video baby monitor. My biggest worry was that I would miss a seizure, she wouldn't breathe, and she would get brain damage or die. I had a lot of anxiety about all of those things.

Those are hard words to write. But I learned to "feel" her moods and try and just let the risk be. Will it be there for a long, long time. Will it ever go away? I really don't know.

But I also know that there are mothers out there who would be happy to "just" have those worries.

I know I am lucky, and I know that I am strong, as is Shrimpy.
Somehow, through all of that, we managed to breastfeed for 13 months.
Somehow, we managed to not let Epilepsy rule our life.

Do I wonder what life would be like without a bed monitor and video monitor for my Shrimpy? Do I wonder if the medicine made her personality different? Sure.

Luckily, most of the time, I don't wonder if we are doing the right thing because it just feels right.

These things make our family feel good:
- We speak openly about her Epilepsy so that she knows there is nothing to be ashamed of-we are even working on her learning on how to give herself her medicine
- We don't ask for her to be treated differently- but we do avoid her triggers (so, sleep is holy and disco balls are not our friends)
- We don't watch TV with her- screen time is limited to an occasional Sesame Street song on a cell phone
- We keep to a schedule that we try not to make too busy and think twice about when we decide to act outside of it

So, on today, like every other day, I will let myself mourn the life I didn't have while concentrating on the awesome life I do have- with an amazing wife and wonderful child who never ceases to amaze me.

Shrimpy may be special needs in her own way- but I have come to the conclusion that each child has their own special needs and each life has its "normal".

Wednesday, July 29, 2015

What do you want to be when you grow up?

For a long time, I thought I would become a doctor. Coming from a family of medical personnel, it seemed doable. Until I had high school chemistry. Which I hated.

Then, I thought I could become a writer. But, then I realized that the world is full of writers and that it is very hard to make a living as a writer.

So, I decided to do what I was good at, and studied languages.
Since I didn't want to be a translator, I got an MBA and went into marketing.
It turns out that marketing managers often aren't nice people and I have trouble caring about selling stuff that helps no one and in fact could hurt people. So, I transferred to HR.

For awhile, I thought I was helping people because I could help them get answers and lend an open ears in time of stress, etc. For awhile before my leave, it felt like I started to drown in nonsense. Like we no longer treated people as capable adults. We also added so many processes that our processes have processes.

To add insult to injury, the strategic projects that I was in charge of before are now gone since my replacement wasn't qualified to do them. And now, since my boss is having trouble getting meaningful work for herself as well, which understandably means that most meaningful work she keeps for herself.

In a nutshell: I am bored and I feel like 85% of what I do is meaningless and treats my "customers" like they are utter idiots. It is hard.

A part of me feels like my inner hippie needs out- in reality I see myself as a darn crunchy mom and friend who would love to do something where it would matter if I didn't do it- something where I am actually helping and / or writing- doing something more freely.

If only it weren't for those pesky student loans that I probably have 10 years or more left to pay back on. Or maybe, just maybe, I can do both. It would be a lot of work, trying to write enough on the side, but who knows- maybe I would finally feel like I am what I should be, now that I am a grownup.

In the meantime I am trying my best not to let the stress of work get to me and put off the feeling that my cells are slowly bonding with my outdated desk as I sit away my days- at least I earn a good wage (and I am grateful for what it provides us!)- but sometimes things get so ridiculous and nonsensical that I want to run away screaming.

Writing instead seems to be helping for now, at least.

Tuesday, July 21, 2015

Oh, hey. silence?

I would apologize for writing, but the truth is, I am not sorry. Turns out I needed the time to come more fully into my role as a mother and enjoy our little family oasis before starting work again in February 2015.

Now, I feel like I can write again- but where to start?

With the little one, of course!

Luckily, we are all doing well. Shrimpy still has her undefined form of Epilepsy but had her last petit mal in October of 2014 and her last grand mal in April of 2014. She has myoclonic seizures at times, but they haven't influenced her in any way other than being a pain since she gets them in that in-between falling asleep phase (imagine a whole body jerk- like those that everyone has at some times, but with 50 in 30 minutes- that is how we knew they were epileptic). She doesn't seem to have any other type, and we have her down to 2 medications and want to see if we can get her to 1 medication this year if possible.

Her development is right on track if not a little ahead, which we are over the moon about. Her head circumference is a little on the small side, but it isn't noticeable. There could be a connection between that and her Epilepsy, but it is hard to tell. She has been walking since the end of February, which is also when she self-weaned (probably because I started work at the beginning of February and my daughter doesn't like to expend too much energy if she doesn't have to). Her vocabulary has been growing in leaps and bounds in both languages and she has been to the US twice now. She is sweet and funny and stubborn and curious and I love her so. We got our first choice for her daycare and she runs in without saying goodbye. It is awesome and pulls on the heartstrings a little too. She runs towards us giggling when we pick her up though, which totally rocks.

What else?

Broom and I are great. Our 5 year wedding anniversary is in September, which is just crazy. Life gets hectic every once and awhile and we have to remember to take time for one another- but I think many couples have that. We moved in April due to mold in our old apartment and our new one is definitely much bigger and nicer- two floors and lots of space for when we decide to end Shrimpy's status as an only child. That project should be starting soon- and the plan is for Broom to carry! We found a naturally-oriented gyno who I really like, and I hope she feels the same way. The gyno has agreed to help us all that she can in our future child making endeavors.

Going back to work has been anti-climactic. My job was adjusted for the woman who replaced me and since she was less qualified than me, a lot of tasks are gone and I am quite honestly, bored (I am aware that that sounds like I am putting myself on a pedestal, but it is very much a different job). I am working on getting them back and also applying when new jobs come up. We will see where it takes me. All in all, the transition has been ok though. Do I wish that my job was stimulating and fulfilling so that I didn't feel like the cells in my body are turning into the same material as my outdated desk? Sure. But I know I am damn lucky to have a job, and it makes a lot of things possible for us which I am grateful for.