Monday, July 14, 2014

Why does it bug me so

I try really hard to evaluate my attitude on a regular basis.  I realize I'm skewed in many areas and am always needing to try to see things from a "normal" perspective.  Course, that being said...any experience anybody has shapes they way they think and feel right? Recently it came to my attention that the words  people say to us in our situation can sometimes feel patronizing.  I will find myself getting aggravated and wonder why they even spoke.  Not only have I found myself irritated in my own life but in other's as well when they are facing the same comments.  After a conversation with another SN mom friend, she spoke some words that kind of shook my thoughts...we didn't know what this life was like before we walked it and so well meaning words are just that.  Well meaning.  Plain and simple.  SO, I must remind myself to be gracious...besides it's not really their words that are painful to me, it's my situation.  I must admit, there are times when I think  I really just want to have a reason to scream and be angry at someone when I'm struggling.  I just want to unload. Never happens because in the end I know it serves no purpose.  Maybe that's why when I get phone calls like I got today I feel totally unreasonably irritated.

Lillian's urology office called today and wanted to schedule her DSMA.  (this was a test they wanted her to have back when we saw them in Feb. and after we researched it, we told them last month that we declined the test.  Many many reasons) So, "Sunshine" calls and is giving me the date for this test that we twice told them we were not doing.  (rather putting her through for their medical research purposes) Here's how the conversation went

Me "she's not having a dsma, just a renal ultrasound"
S "well, back in Feb, the dr wrote we are to schedule it for august"
Me "we discussed it and I told her we wanted to wait to look into to then we told her last month we were not pursuing the test"
S "well, her notes say to schedule it and they company making the dye is discontinuing making the dye and they are almost out of it"
Me "ok, well, we are not putting her through the test, just the ultrasounds"
S "they are almost out of the dye and if you don't get it done you'll never be able to...they are the only company in this (emphasis) country who makes it and they are not making it anymore."
Me "right, we are not having it done"
S (irritated) ok. bye

SO much condemnation in her voice it was palpable.  I think I might have some more attitude adjusting to do today...sigh.

Monday, July 7, 2014

So, it's been interesting here the last few weeks....

Getting to comfortable in not being more attentive to Lillian.   It has recently really sunk in that she needs constant attention.  In many ways she is much like a very young child that doesn't understand many many dangers.  For starters...stairs.  We had been letting her travel down 7 or so stairs alone. (and up) until last friday...she was about halfway down the basement stairs with an older sibling close behind when she just got a little off balance about half way down and tumbled to the concrete below.  I had been upstairs with the baby.  Let me tell you friends, it was traumatic.  For her, for the two older girls and just down right scary for me.  Both girls were crying.  Lillian wouldn't move.  The child has no meat on her bones and she doesn't have protection skills.  (meaning she doesn't think to try to protect her head and such) to make things more difficult, she can't tell us where or if she's really hurt. She's always a little off balance, but when her ears are messed up she's even worse...falling constantly.  A few weeks before that, to make a long story short...she stuck her whole sleeved arm down a burning jar candle.  It's a miracle she didn't catch herself on fire.  There was another dreadful thing that happened, but I think my brain blocked it out because I can't remember it...but it was in between the candle and stair incident.  In a lot of ways, it's as if I have two infants.  I knew things would get a little more complicated with Ezekiel adding in and now that he's crawling and putting EVERYTHING in his has gotten super challenging around here.

Fears, have I mentioned fears?  She is suddenly afraid to go to the bathroom alone...she's suddenly terrified of thunder.  We can't take her to band concerts and totally freaked out at graduation...OH that was it the other trauma.  ( I think I blocked that out for many reasons) And the wind.  She's afraid of the blowing wind.  I think it's because she can't physically combat the wind they way we do.  She won't stay out side if there is any kind of wind blowing even if the day is beautiful.  Sigh. If she wakes in bed alone she freaks out.  If I go to the bathroom and leave her alone...freak out.  Traffic noise on a road or a parked big truck outside a building idling.  What's scary about that is the only thing she thinks of is getting away from what it is that is scaring her not comprehending there is danger  in the way she is trying to escape...

We have also noticed a marked decrease in her activity level.  A LOT of resting on the couch.  She used to be up and running all day, but in the last months we've seen quite a change.  I've also noticed lots of episodes of apnea during sleep. All things that will need to be addressed at our next pulmonology appointment and I'm sure another sleep study will follow which we do NOT look forward to.  While I'm not focused on these does scare me.  Matt pointed out that she is getting bigger and perhaps the lung damage she has is making it harder for her keep up.   That strikes fear in me like I can't explain...but all I can do it give it to God.  It nearly breaks me in two when I think of the what ifs.  I know I know you're reading this and thinking...Michelle you can't do that...but I'm just keepin' it real guys...

In related news, I mentioned our housing situation seemed a bit sketchy...and I was right.  We've been given an ultimatum.  After the fall on the stairs I'm pretty sure we will not be staying here.  We have been offered another home by friends, but it is not in this area and if we can stay in this area that would be our preference.  So prayers  for that situation.

I've had so much weighing on my mind.  I read somewhere on facebook, I think a quote by zig ziglar that your past doesn't have to dictate your future....I strongly disagree... .
  I want to have my OWN home and a home that works for my daughter.  That means one level and a finished or partially finished basement that can be closed with a door.  We have to have central air due to her lung issues.   And I don't want to have to move my kids to a new school again.  So many things out of my control leaving me feeling like there are little to no options.  Thank goodness I'm not in control anyway, but it's still hard.   After typing this I'm thinking it sounds so depressing...but this is our walk and this is the real.  AND, I just really needed to get it out.  I'm struggling with feeling isolated from "normal" and from people who have kids with special needs who have a support network.  It seems people who have SN kids with commonalities hang to each other and I get that, but I feel lonely.  A lot.  *inhale* now I have a big painful lump in my throat....

On a positive note....she's a light and we are all brighter because of her.  We press on and do the best we can changing as the path moves us.