Saturday, February 27, 2010

I lived to tell about it

I do not do birthdays every year so every second year the kids get a party, well this was that year so both Tony and J'naya have had thier birthdays and I'm still here.

Tony's party was a simple in home party that I screwed up the days instead of friday like I thought it was actually saturday, but it went pretty well. For J'naya I cheated and did it at the bowling alley, nothing to prepare just bring us cake and goodie bags and they do the rest it was great!!!

Friday, February 26, 2010

I didn't think of that!!

So this week I FINALLY got to church it has been a LONG time and I have missed it alot, but with one vehicle and Jeff working days on Sunday and Me starting my week at 11 pm on Sunday well you can see why it has been hard. Any way I went and because it was the same week as our appointment with the doctor I decided to ask for prayer for J'naya and Tony (I'll explain in detail what is going on with them in a second) you see we have praise and prayer time every week and it is basically a time to share the good and the bad that has happened over the last week and to pray about both, so as they were praying for the kids, he said"help the medicine heal the children" my first thought is that is not gonna happen, it was then that i realized. ONLY GOD can cure the children of this disease without transplants. I have NEVER thought to even ask God to cure them, I have begged, cried even pleaded with God to keep my children healthy and not allow them to die. But I have NEVER asked him to heal them, why not?? Do I think he can't? No it just never crossed my mind, I was supposed to be there this week so I would hear this and ask!!!

Does this mean that they will be healed? Nope it simply means I will ask sometimes the answer is no, and I"ll come to terms with that as it happens.

After our appointment with the doc, I was somewhat down, you see we saw a new doc and every time we see a new doc the same questions get asked, which child has the disease? How many children do you have? Have any children died? Why did he die? Do you think that maybe it is PH1 related? Then I spend the next few days wondering even hoping that, that is the case. Why you ask?? Cause then it's not my fault.

I do realize that there is a very high case that my kids will need new livers at some point maybe even new kidneys. We were told that they will never get better they will get worse, and it could be fatal. I prefer not to think of the could be's and rather live in the nows, right now they are as healthy as they can be while living with PH1. The one little glitch is the talk of putting tubes in to feed water to the kidneys overnight, and adding to the anti-stone meds ( i know that's not the right word for it but the "real" name is gone at this point) What I didn't ask is what that would mean in terms of their kidneys and infections, I guess we will deal with that as it happens, for now we will pray for healing!!!