Living With HIV

For those of you out there that stumble across this blog hoping for some great information on living with HIV, I apologize for the woeful lack of material.  To be quite honest I don't think about it much these days.  I have an alarm on my watch that goes off at 7 am and 7 pm to remind me to give Jubilee her meds.  She has one as well, and is very good about taking her meds, most of the time.  Nes is still not on any meds and is doing just fine.

Rick got the treat of taking them to their appointment with the pediatric specialist in Seattle.  I haven't heard how it went, other than a call from Nes saying that he got a shot and didn't cry.  He never cries during the shot, it's the wait that is torture.  Nes only has to see the specialist every six months.  Jubilee is going every three months right now, but if her meds are still doing their job, and she doesn't need to go back for a check into her TB status she may not have to go back as often either.

I'm  not sure Nes really knows that he has HIV.  He is only 5 so we keep it simple with him.  Jubilee is very aware that she has HIV.  She has watched many people in her life die of the disease.  She has asked me why she didn't die.  I have assured her that God has a plan for her life.  She has a wonderful friend from Ethiopia that also encourages her on this point.  She told her that she needs to be thankful for the virus, and how God is going to use it in her life.  Honestly I don't know why she didn't die.  I know that she was very sick when she came into care at AHOPE, but she responded to the ARV's and now she is doing well.  I think she sufferes from some of the side effects of the medications, which is a small  price to pay for life.  There are days when she tell me that she doesn't want to take her meds anymore.  I'm not sure if she is just testing me, or if she is depressed enough that she is hoping she will die.  I've told her that those meds are keeping her alive, and if she is looking for a quick way out of this life, stopping her meds is not a good solution.

Being HIV positive is definitely a bigger issue with older kids than younger kids.  Older kids felt the stigma in their lives.  They were the outcasts at school, and in their community.  They know that they have a disease that can kill them.  They know that  their lives our unpredictable.  They also know that the meds that save them, sometimes make them feel icky.  Their lives are fairly normal, but with the knowledge that all that can change very quickly.  Most days I don't give their HIV status much thought.  Our community has been very gracious and supportive of our kids.  We have had very few negative reactions, and those have mostly been because of the weird medical procedures that we sometimes require.  Overall my oldest daughter's allergy issues have been a much bigger pain. 

I will say that I am VERY thankful for our medical insurance, and the gracious funds that Children's has made available to us.  The meds we are using now would cost us in the area of $1500 a  month if we had to pay for them out of pocket. God has been very kind and covered all of our costs so far.  Other than the meds, however, the costs are not bad.  We have paid much more for Nes's teeth, and to make sure that Jubilee's lungs were clear.  I guess it is all part of the cost of raising children.  I am very grateful for both of my children, and how God has provided for them.  Living with HIV has been relatively simple so far, but I know that it is all by God's grace.