Today.....

It really was a fairly good day not much for melt downs or behaviors .Zach has been having horrible nightmares that are really vivid..I guess that is a side effect of one of the meds he takes .What an unfair trade off we can balance the moods to keep the bipolar symptoms under control but at night we will give him horrific dreams that spook him all day.

Liza is stirring as we speak .. don't think she feels great... she fell over the weekend and is full of bruises ..one of the things we are to watch for is excessive bleeding that isn't an easy task .

Atleast we have a diagnosis to look into

 We now have a diagnosis Common Immune Deficiency which is a simple term for a complicated disorder.

Atleast we now have something to watch for. I am so impressed with the Dr's there.

 While there no cure or getting over it there are things we can do to control her environment.


Grateful for the prayers

Should be in bed

It's midnight and I we get up at 4 to take off for Liza's appointment. I can't unwind,, mind is too full it was a hard mental health day in our house and now we all get to cram into the van and head off to the cities.

I want answers tomorrow and then again I hope it is nothing we can't just treat and deal with.


if anyone reads this I ask that they keep us in their thoughts .....We would appreciate it

Tick Tock --

That is all hear is the clocking telling me I should be in bed. I have tons to get done tomorrow -Zach has a bunch of school work and I need to get the records ready for when we go to Plymouth early Friday AM. We get the results of her Immune testing in the last month since we have been there she has been running temps and looking sickly off and on.I just wish the kid could get a  break.


Zach was in a really light hearted mood tonight I was telling another parent that there are days I look at him and think we are fine and going to have our normalcy of course my bubble pops when he starts to obsess on something to remind me that it is still there.

Tonight when Bruce came home I was all excited on how I was going to help advocate more for the kids and help raise awareness on mental health needs.

I forget at times he has worked all day and sometimes needs some down time before he jumps into my world.I was a little crushed when his only reply was don't you have enough on your shoulders maybe you need to finish college first.

He has always been my voice of reasoning I get all keyed up on something and am ready to do it at mock speed where he will slow me down and look at it more.
But I do plan to help be proactive even if I have to do it in baby steps I still want to help and be a part of something.

Empowered

I had a  conversation today with another parent it made feel empowered and good about my world.Although there are tough times I know I have met my calling.
So look forward to my future( at least today) 

So far

So far everyone is content -when there are times like these I almost forget about the storm that lies beneath.The sun shining -the wind is blowing the chimes that combined with the hush of the pine tree it seems almost perfect
I grab those moments and cherish them.

The calm after the storm

Yesterday was a rough day for Z.Today he is calm and is his usual sweet self.It amazes me how ugly the storm can be. He is so out of control and has so little tolerance to stress.Tonight he is sitting here drawing and watch tv chattering away at me.
Last night he was like a raging bull and you best get out of his way.

I always worry about just how much to share about his mental illness. I don't want him judged and don't want him treated like oh it's that kid.

Today: Rage Rage Rage

Today: Rage Rage Rage: "I never know when the rages of Z will hit.or just how severe.Tonight I got in the way and got hurt.At one point in my life I would have been..."

Today: Naive

Today: Naive: "Every time I think I am all grown up and 'street smart' I realize I am still naive. When we adopted the kids I was naive then thinking that..."

Rage Rage Rage

I never know when the rages of Z will hit.or just how severe.Tonight I got in the way and got hurt.At one point in my life I would have been apalled at getting hurt. Now it is almost like doing the dishes.
Thankfully I had someone here to help me pull myself together ..
I called a fellow special needs parent and chatted about it all.

Sometimes I feel like I am a stranger in a strange land.Luckily I bump into someone from the homeland-Special needs land.

Naive

Every time I think I am all grown up and "street smart" I realize I am still naive.
When we adopted the kids I was naive then thinking that I would be able to go and get services whether it be medical or therapy and be able to  say they are special needs kids and I need help.I soon learned that I needed to jump hoops in order to get to what I sought. I have gotten better at understanding and playing the game ,although I still have issues with putting our kids second but at the moment it is a fight to get funding where it is needed.
I new lesson of my naiveness was I assumed I could turn to any church and we would be greeted with open arms and because we are all God's children that our family we be accepted and not that I was hoping for special treatment I had hoped for understanding.Instead and this isn't about religion everyone is entitled to their own opinion and freedom of choice to worship as they wish.But we were told straight to our face that we didn't love God enough and if we were better Christians God would lift the inflictions off the kids.It is our fault that these two kids struggle because we don't love God enough and we don't live like we are suppose too.
It just goes to show me that I am still naive if I didn't realize like anything else you need to research and make sure something is a good fit.

What's my plan

That is what Z asked me today.tear filled eyes asked just what is Gods plan for me and cant he take the dark monster out of my head.
I had no answer all I could say was we can do is pray.I can document,run to therapy and research but I can't take the pain away.