Normalcy

That was the topic of pillow talk tonight .. Bruce is worn down by all of the craziness of our life.. I guess I have become numb to it all.. He had told me tonight he wished for normalcy .. he wanted a break from behaviors ,feeding tubes and all the heaviness our life holds.. Not to be mistaken for not wanting to be here .. he just wishes he could make it easier for everyone.. I see him going inside his shell..
My response to him is this is our normal now and we have to sneak moments in for "us " in between the times we are dealing with things . I don't know what to do to get through to him .. and I don't know how to help him.
We met with Zach's therapist tonight .. all went fairly well .. we will be restarting therapy again.
Tonight I feel sad and helpless.......

Lately

Zach has been the one that we have been running for ....his asthma has been giving his troubles and he needed steriods .. well the steriods increased his anxiety..We have had some behavior issues lately.. I am frustrated tonight we are talking with his counsoler and hopefully we will figure things out...
I had put a call into his Dr .. and one of the nurses told me I just needed to parent him ...thought that is what I have been doing...

My Kindred Spirit

A warmth covers me,
when you speak to me, my friend.
My kindred spirit.

You know me so well.
My deep hidden fears you calm.
I feel your guidance.

Your words are with me.
Your gentleness surrounds me.
I feel a sense of peace,

Your strength implores me.
Your keep me honest and true.
You guide me along.

Gently you hold my hand.
Leading me along the path.
My light in the storm.

Sick kids

Last week we were in the Er room .... saw 5 Dr's ...... this week and it is only Wed am we have been to 2 Dr and the Er and I think back to see the kid's Dr today.... makes 5 trips to SFalls in less then a week.

Liza looks like more of a motility issues she has lots of air in her tummy ... frequent streaks of what we thought was constipation which is now looking more like her digestive system doesn't do what it is to do ... which will mean more meds... Even though they HSAN disorder isn't a actual diagnosis .. these are the things that keep it a possibility we will just have to sit and wait..

Zach - well lets see looks like he is borderline on having a bleeding disorder ... He had some strange circulation issue last week ...his legs from hips to his feet were blue ....
This week it is his asthma .. he has a fever and a cough ....
A close friend has stated that while we have no medical background we certainly are making a medical history for them both now......

I know I tend to talk alot about Liza .... but it doesn't mean this young man is any less important .. He is his happiest in the outdoors.. This whole ordeal with Liza has taken it's toll on him too.. I think we are all better and stronger now .. but it has been a rough road . yet he is still the loving brother who takes him for his little sister ..he worries about her when she seems sick ... God has given us 2 of the most precious gifts ... and for that we are gratful

Loss

I can't go into details here as much as I like .. while I like to thing this is my place to let things flow from my mind .. I also know others are reading .....but I need to get this out .......

There is a key person in our lives

Tonight

The blue shirt pic was taken in Feb right after we got out of hosp. and the red one was 10-13-08

Tonight Bruce wrote a poem ... he never writes poems ...

10 months ago I laid in a bed

you feared you were going to say goodbye

Now I am here looking at you telling you

it isn't time ..

We were talking about life .. and how it throws you things you would never think you could handle .. This has been one of those roads .. but I think everyone is doing ok

It has taught us just how small we really are .. that there are so many things bigger then us .

Somethings have taught us patience and petty some of our daily hang ups really are .

I believe we all need to keep a part of ourselves for us .. but we have noticed that our special needs here have carved out our life.. We never know if we are taking a trip to S FAlls ... hence never is our gas tank on E,, You never know when it will be a sleepless night due to the feeding pump leaking or asthmatics need nebs... We don't make long term plans anymore.. we try to just take it day by day.. For we have learned how fragile life really is ....

I have found strength in me I didn't know existed .. I have little tolerance for bullies ...and respect the fact I need others to get through today .. I am trying really hard to find my one thing that I feel the strongest about and stand up for it.

I want to be the mom that makes my kids proud ... I want to be the type of woman that stands on her beliefs ... An advocate of sorts .... we have been through alot we have had to sever ties that were toxic for our family ... we have learned to be creative in family time ...and we have learned to lean even more on our faith...

We have to make some hard decisions ( ones I can't get into here ) choices that one shouldn't have to make.. but soon our kids will be able to see adults don't always act like adults and that sometimes we just can't have certain ones in our lives.....

3rd Birthday

Here is the birthday girl.. almost loosing her in January made this even more a joyous occasion...

We also found out they are dropping the genetic disorder from a diagnosis to more of a lets just keep an eye on it...

The Dr's feel she is doing so good ( still doesn't eat and mostly tube fed) that they reevaluated her ...

Birthday blessings to her......

My week

Well this week ... Liza seems to be the sick one still... she had severe constipation issues in the very begining . .had been resolved after the feeding tube... but in the last week went 6 days without going... so we ran to Sioux Falls ... had her checked out .. dealing with it at home....
She is being sent to an ENT .. her tubes have come out probably will need new ones..
Next week I get to juggle 2 Sioux Falls runs Liza will be fairly easy....Zach has to see 5 Dr in one day...I am really hoping to get ontop of all the running before it gets really cold and wintery....