SO the price rise

Why must things be so darn expensive!  My husband and I have been going around getting prices for the hydro spa that my son is going to need for his therapy  and a building for it to be housed in so he doesn't get sick in the winter. Well we found out the hydro spa is 11,000 and  depending on what type of buliding you put it in those range from 7,500 to 18,000 .  My insurance doesn't want to cover any of the cost of his orthoditics that he will need every 6 months either  or his hyrdo therapy and his physical therapy. 
However they will pay to have me trained on both therapy's and for Tristan and I to learn what we will need to do for the rest of his life.  Ugh.  Right now I am scrambling my brain to figure out what to do .  I pretty sure I am going to have have a fundraiser/benefit.  I have never had to have one for my son . We have always been able to provide everything he needs. Having a medical needs child comes with LOTS of expensive bills that insurances don't cover.  It would be much easier if he could just go to a public pool etc.  With his immune system condition and all his other medical condition it makes impossible to do. I won't chance that.  I chanced his immune system once before when I let my son go to my dad's wake which was 1 hr and only for family.  That resulted in my son getting very sick and his infusion levels getting raised permanently. I will never forgive my self for that.  I let my guard down for just a moment and it resulted into that.  I know I should blame my self but I do. Now I have to figure out what to do. More on the subject later. God Bless.

Still unable to talk

I am still unable to write about the new conditions the doctor has said my son has. This is on top of all the other things he already has.  I still trying to wrap my head around it all and I am researching it. Why is it that my son gets the rare things that are hard to research?  I can tell you my head hurts very much and I am awaiting the blood work  results which take 30 day to run or 30 days of more torture.  Out of the mouth of the doctors " there is usually something else that goes along with this"   .  My insurance is being a PITA (Pain in the Ass)  .  So all this new therapy and orthodontics and buying the equipment for the hydro therapy is all on me. This is stuff he's going to need for the rest of his life.  So far the price is around $17,000 which I don't just have laying around .  I am researching on holding a benefit or fundraiser or donations now.  Wishing I had help from someone , but I should know by know if I want something done I have to do it myself.  How come other people can depend on you but when its the other way around they just don't care.  I tell you something it almost makes want to scream and say something .  I can see if I didn't have my faith where I would be telling some people where they could shove it! You really find out who the people that care about you are.  Some where in my mind I have this thought that if I say what the condition is it makes it permanent.  Very few people know whats going on for now.  I  won't leave you hanging just trying to deal with the emotions of it .

God Bless Everyone who is praying for my son and family We ARE VERY GRATEFUL!
Please people keep donating that blood and plasma! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!

WE ARE NOT CRAZY!!

  This one goes out to all the parents who ever had someone think they are crazy or making up their child’s illness just because the people (& or family) can’t find their illness online or never heard of it.  NEWS FLASH there is lots of RARE medical conditions. There is a TON of illness that is not online! I have been asked and accused of this so many times.  What really hurts the most is when FAMILY does this and they choose not to understand!   I am going to tell you all something I should have said to family & friends & people in general, when I hear someone suggest “It’s all in my head”.  Well here’s what I will say to that from now on.  I should have the guts to say it many times to people but I was told to just “turn the other cheek”.  SO, I have thought this is in my mind many times.   WHAT ARE YOU PEOPLE STUPID OR JUST HAVE NO BRAIN!!  I mean really?   Let’s stop and think or can you? I mean actually use your brain?  Do you people hear the nonsense you’re spitting out your mouth??  I mean really WHO in their right mind make up an illness for their child.  I mean there are people but I am not one of them!  If you don’t know me well enough to know that, then you DON’T need to be in my life.  Really?  I know in your silly mind you think its all fake.  Let’s break it down for you.  I am so good at this “fake illness” that my child gets blood infusion, oh yeah and let’s not forget all the surgeries, oh and there’s the fact that he’s a MAKE A WISH child!  Really in your pathetic little mind you’re the one who needs the help!    Here’s a NEWS FLASH!!  1 .  Every time my child goes to the doctor it comes with more than one opinion of more than one doctor. They don’t just say he has something it comes with loads of testing to be sure then they tell us.  2.  They don’t give your child surgeries for NO REASON.  3. You don’t get infusions for the fun of it.  4.  You sure in the HELL don’t just qualify for MAKE A WISH!  5. You don’t get medication to take for no reason.

It saddens me that I have to spell it out or just get plain mean.  Don’t assume for one second that just because he has been doing fine for awhile that another major illness can’t come along.  WRONG! It can and it does!  There’s a LOT of work that goes into him LOOKING FINE. What I will never understand is those people who think,” oh your kid looks fine” and still don’t get it. Or those people that see what you go through and still choose not to accept things are wrong.  Until something major happens.  I want to shake these people and scream and yell!  I wouldn’t wish anyone with a major illness. I experience firsthand what it’s like.  I see other families that I have met go through the same thing and we pretty much all have thought like this at some point.  So when you meet families with a sick child don’t assume you know everything. Simply ask how things are, then pray for them and go home and kiss your family and be thankful you have a healthy one! Be thankful for the things that yesterday you were pissed about. You never know when or how quickly your perfect life can change.  My life revolves around my child and his life, not the other way around!  I do everything in my power to make sure he’s well taken care of.  His life comes first.

 He didn’t ask to be born; he didn’t stick his hand in the air and say I need an illness. This is what God’s plan is.  Now I have been asked many times how I can still have my faith after all God has done to me.  This is my response.  God didn’t give me my son the illness the DEVIL did.  God gave me the doctors and the things I need to take care of him.  Sometimes God does take a child home to be with him or an adult for that matter.  He takes them to heaven when their flesh (human body) can’t take anymore.  Loads of people get the two confused and get very angry with God.  I be lying if I said I haven’t felt like that before too.  After a lot of understanding I learned God is who I rely on to keep going. God is the one and only that can heal my child. Yes some of use goes through more than others.  But along the way you always will have someone cross your path that your experience can help them.  Have I learned a lot since I became a mother to my son absolutely!   I met some AMAZING children and some AMAZING parents and some AMAZING DOCTORS.  Do we all count our blessings YES.  When one door shuts on us we wait for the other to open.  I have learned so many things. I am grateful for having amazing doctors. I am grateful for meeting some AMAZING families.  Don’t get me wrong I still have days where I want to bang my head against the wall wondering what in the hell do I do .  Then I remember if it was brought to me then I need to take it to God. Which sometimes that itself is a very hard thing to do! There are a ton of emotions that you have as a parent of a sick child.  There isn’t a manual that comes with a sick child either or any child. 

Well these are my thought for today.  I hope it helps someone out there!

What it's like to be a parent of a Medical needs child!

Being a mother of a medical needs child, I often get asked this question. “How in the world do you deal with or do it all?” Well this is my answer to it. By THE GRACE OF GOD!! Being a Mother of a child with any medical condition doesn’t come with an instruction manual. Boy do I wish it did. However I can tell you that it is for sure a learning process. I can’t even tell you all the stuff I have had to learn. I choose to learn about what my son has so I can be educated. Now no parent wants to hear there is something seriously wrong with your child. Let’s take you back to my very first time of hearing news. (this happens every time the give me something new news or a new condition) I am sitting at the doctors waiting in this very tiny room. I am hoping for some answers to all my questions. Well no parent in their right mind can be prepared for unexpected bad news. The doctor is talking and at one point I am looking him in the face and I see his lips moving but I am not hearing anything else come out of his mouth. For this reason I always ask my doctors to give me a recap or take someone or a recording device with me . At the very moment that my mind goes blank while the doctor is talking I am thinking WHAT THE HELL DID I DO FOR MY CHILD TO DESERVE THIS???? This question will never be answered because over the years I have learned it’s not my fault. As parents the first thing we do is blame ourselves! It’s a natural reaction for us as humans. We have to learn that God made us special for a reason. Yes it can be argued Why, how is all this useful? Once everything soaks into my brain I decide you know what this is the path that was chosen for me so no more wondering or feeling sorry for everything that isn’t in my control. Time to pull up my boots by my boot straps and to put on my big girl pants & go in to Survival mode! I have a child that I brought into this world and that didn’t ask to be created that depends on me to take care of him. So my brain goes on auto pilot! Time to learn what is best for my child from his doctors and do what needs to be done no matter what the cost or what anyone else thinks. Onto phase two. Having a child with any medical condition comes with all kinds of trials and errors to see what works best for your child. I will never ever forget when some family members thought we were nuts, crazy, overprotective, making things up . All because they choose not to believe or understand what we were dealing with. We as parents try to educate them but you can’t make someone listen to you. You hand them over to God & pray for them. The hardest thing for any parent is to except that there is something wrong with your child and deal with everyone else. The second hardest thing is the expensive medical things that the insurance doesn’t cover which are always never ending. Sometimes we as parents feeling like beating are head against the wall or wishing those magical money trees really exist. Or totally beating yourself up because there you can’t provide something that your child needs. The third hardest thing for me is seeing what my child goes through and sees him in pain. Seeing the world through your child’s eyes is and can be very eye opening. As parents we make what choices we think is best for our child. When my husband & I make decision we don’t do them very lightly. It usually comes with hours of research and endless talks with our child & the doctors. Weighing out the options if we go down this path or if we choose another path. Each step isn’t taken lightly & a extreme amount of thought goes in to every decision we make on a daily basis. We don’t get the luxury of flying by the “seat of are pants” or being spontaneous. Everything we do is planned out. Heck you get to the point where you even plan out the “what if situations “. Now, there a whole other aspect to all of this when you have one sick child and one healthy one. The other child who’s healthy also feels like us parents sometimes. Simply, because they also get the short end of the stick too. How you ask? Even though there healthy they learn that there maybe things they can’t do or places they can’t go all because of your sick child. They also grow up quicker than they normally would. They we as parents go back to beating our self up all over again. Once again it takes a lot to be able to get over these feelings. The only thing I can say is every time I got educated I made sure to educate my children sick & healthy. If you exclude your healthy child but make them live with the atmosphere of the sick child they will rebel and even possible blame the other child and even decide that there mad or hate you. I didn’t want that risk so every time we learn something with my son. I choose to involve my daughter. So people think that’s wrong but I have seen firsthand what not involving the healthy child can do. Now don’t get me wrong my daughter still has these feelings of why off and on. I always tell her to take it to God & imagine if it was her and not her brother. Is it right she has to mature a little earlier no but does it and will it help her when she is an adult YES. Well this is what has been on my mind lately. I hope this helps some people understand how we as parents feel.

OMG I can't fit anymore information in my Brain!

Having a child with a medical condtion comes with a TON of imformation. Plus lots of things to remember to do or not to do. Recently they added some more conditions on to my son's already long list of stuff wrong. UGH! Right now I am trying to absorb it all and figure out the best method to deal with the new stuff. Of course I am trying to figure how the new stuff is going to mix with the already existing medical conditions. Research and being educated by the doctors really really makes my head feel like a computer system. I am not saying what his condition is just yet until I can wrap my own head around it. I will inform everyone once I have a game plan in place .