Thursday, October 25, 2012

learning to pocket my pride in moments of darkness

Tiernen letting me love on him on a "dark" day
I have always seen myself as the kind of person who can handle what’s on my plate - alone thank you very much. I am a semi private person and although I like to share my life with people, I like to choose what I share. It is a very humbling experience to have very little control in the daily running’s of one’s life.  My home is more often than not kid cleaned and blind- mom approved. So if you come over and my floors are nasty just know they are trying the best they can and please don't tell me because as far as I can “see” my floors look great!
         I have been putting this off for a while because I didn't want to spend the time it would take to post it but I have recently started feeling some of the signs that things are going to change soon. I'm starting to lose my words not often but five or six times a day, my memory is lagging and I have to have things repeated again and again,  my headaches are getting more and more intense and of course my days are getting blurry again... So, my typing days are coming to an end soon, for a while at least and I wanted to get this down for me but you can read it too and comment as well if you would like. 
        My vision is constantly changing because the pressure is constantly changing. I am currently on two separate medications, high doses multiple times a day to help reduce the amount of fluid I produce which in turn relieves the pressure on my braina and eyes. I think that is why my most recent spinal has lasted clarity wise for this long. It has been almost like having my old eyes back minus the peripheral vision, a few black spots that didn't clear, and the fact that I still can't drive.  Normally in between spinal taps in one eye I kind of feel like I'm looking through a camera lens that is trying to focus but can't settle and in the other eye it is almost always blurry or black. For those of you who don't know my vision is blurry at best and almost nonexistent at its worst in my right eye and my left will go from blurry to clear-ish with black spots and back in a matter of minutes or it may stay blurry but the severity varies and it all continues to get a little worse as time moves on. This has been my life every day for the last three months EXCEPT sometimes for a few days/weeks after a spinal tap. A spinal tap relieves such a significant amount of pressure that sometimes my vision becomes clear again. Not perfect, it has yet to go back to where I was at before it all started but, where there weren't textures and patterns before the tap they are clear and visible to me after were my kids faces where just a blurry shape I now see them. It's amazing and deeply emotional for me.
         Frankly the whole thing has me in a kind of  constant state of emotional Frick frack. One minute I am fine. I completely and totally understand I am blessed, I am loved, and I am OK. Things will be OK . And really in the grand scheme of things this is nothing... But then I have those moments where I get a glimpse just a second really, a peek, of a clear perfect freckle on Rieken’s nose or a small bruise on Bey's chin that wasn't there the other day when my last "peek" happened. It's hard for me to know my babies are literally growing up right in front of my eyes and I AM MISSING IT! I feel so ungrateful and so irrationally upset because I feel horrible having to ask my mom or sister in-law or friend to come help me paint or do the laundry and dishes and daily chores. I feel awful that I can't even chop vegetables without hurting myself because my depth perception is so whacked or I just can't see well enough. My children have had to grow up very fast  and they have done it with humor and love and for that I am grateful. But I think it seems so unfair for them. They have taken on a lot of my household responsibilities and my husband now has the fun privilege of doing all the grocery shopping, errand running, deposit making, and kid shuffling duties that we have always shared or that I did alone. Really why couldn't I lose my sense of taste at least then all I would lose is some weight and I can only see that as a win win. Ok enough whining. 
         I know there are people out there who are visually impaired who live perfectly normal lives. I know once my doctors can make up their minds on a course of action other than spinal taps as needed (that is not an option for me for long term) then I can make a plan. Right now my vision is so inconsistent I don't want to "plan" for a lifestyle of vision impairment when I am not always at one level of impairment. So we wait... We wait and my mom comes and mates my socks and helps me with laundry, we wait and my front porch stays painted two diffrent colors so I can tell where one step ends and the next begins, we wait and my floors get kid cleaned and blind-momma approved, we wait and I pocket my pride and humbly accept with deep gratitude the help of friends and family when necessary, we wait and I take pictures like a crazy person while I’m blurry and hope for the best  then while I lie in bed at the hospital for four hours after each spinal tap I devour those pictures and soak in each detail because once I get home the countdown begins  until the darkness sets in again and I refuse to waste a minute of my "clear" days pining over the past just to miss what is right in front of my eyes.
 I know I don't blog often it’s hard to type when I'm blurry and the same goes for Facebook but, I do post pictures to instagram on a daily basis although some days I just point and shoot at the "noise" or let the kids take it for me but, If you would like to follow my feed I would love to have you, you can find me at:
You can also follow my Man Karl at:
Until next time, N