My Normal Special Needs Kids

What is normal, right? 

When I think Special Needs, I think of kids with Down's or CP or missing limbs. None of my kids fall into those categories, but two of them have some small-ish, special-ish needs.

Most of the time these needs don't really interrupt our day. Which is great! 
But the last few weeks we've been doing some doctor visits and it actually makes me feel very thankful.

1- So many parents see multiple doctors every month for their kids' needs!

2- My other kids seems so effortless. Ok, that might be a slight exaggeration.

3- We have such great medical care here in the US! Wow! Without this care, I wonder how long my kids would survive. And our state makes it so affordable. Thank. You. Jesus.

Max is my really great, out-of-the-box kid who doesn't like to eat. Weird, I know. The picture was taken a few months ago and his hands are covering his g-tube because he is getting a little self-conscience about it. We are working towards gaining weight by eating real food so he can take it out.

The problem is, last month we discovered he lost weight. That was a sad sad day. After an x-ray showed his insides were full of poop, we did a cleanse and saw a little improvement in his appetite. But not as big as I was praying for. It's a crazy catch... if we fill him up with more of his high-fat milk than it clogs him up and takes away his appetite. 

His kid could really use your prayers. Heck, this mom could really use your prayers! It is sad to see my energetic 6-year-old so boney. I also have to constantly chase away my fear. Just writing this is causing me to tense up.

I know God has good plans for Max. I know someday, something is going to click in Max and his appetite will work the way it was designed by God to work!

Deep breath. 

And this little sand princess has another small special need. It's not eating. Nope, she is getting chubbies on her arms and legs and I'm grunting in surprise when I pick her up.

Eva is HIV+ and most of the time it's a non-issue. We actually think about her HIV much less than Max's eating issues. 

But the last two weeks have been interesting with her initial visit to the PID (Pediatric of Infectious Disease) and blood work. She has such great doctors that I'm not even too bummed about driving 2 hours to see them every few months. 

We were disappointed to learn that two of the ARV's (sweet combo of meds for HIV) she has been taking have been resisted by her body. The count of the virus in her blood was higher than we were hoping but not crazy. We had to get more blood drawn for the new batch of meds and may I say a small word to all nurses in the Poking Rooms? 

Please, BE FAST!! Fast trumps gentle, fast trumps friendly. It's not your job to talk it up with the moms before the Poke, to try to say comforting words to the screaming kid or to wait one nano-second fiddling with your gloves. Just.be.fast. Thank you.

So we should be getting Eva on her new meds very soon and start to see her viral load plummet. Of course, I'm still asking God to heal her out right. Why not? 

God has been so kind to our family and we know we will see much more of his kindness. 

Would you guys believe with us that God will change Max's mind and body about food and that he would chunk up? That would be the best thing ever. Well, it would be so awesome anyway. And pray that God would do a blood exchange in Eva and her PID would be shocked to find none of the virus in her body!

Why HIV Matters to My Family

How much do you know about HIV/AIDS?

If you are like I was 3 years ago the list would look like this:
1. Magic Johnson had it
2. It kills people
3. It doesn't affect my life in any way

But my disinterest was blow away when I heard that there are thousands of orphans who are being overlooked because of their HIV+ status. I wanted to know more. 

The more I learned, the less I feared. 

And here is what I learned:

1. HIV is different than AIDS.

HIV is a virus that slowly weakens the immune system. AIDS is the infectious disease that some people get after their bodies have been severely weakened by HIV.

They are not the same thing.

If I have a cold, I could develop bronchitis, but with intervention my cold doesn't have to turn into bronchitis. That is the way HIV/AIDS makes sense to me.

2. Having a person with HIV living in my home does not put us at great risk.

HIV is transmitted in 3 main ways:
     Sexual contact
     Shared needles 
     Mother to infant (pregnancy, birth, breastfeeding)

The virus is NOT spread thru spit, pee, poop or tears. So that means, I can wipe away tears and change pampers and be spit on by an HIV+ person without any fear of transmission.

The virus does live in the blood. But the medical professionals have found that it is a weak virus outside the body and starts to die as soon as it is exposed to air. Even if HIV infected blood touches my blood, it is highly unlikely that I will get the virus. HIV must actually enter my bloodstream before it has a chance to infect me. 

3. People with HIV can live a long and pretty normal life.

There is so much great medicine in the Western world. When HIV+ people are put on ARV's (AntiRetroViral drugs), the HIV count in their blood drops and their immune systems start to rebuild. The lower their HIV count, the less chance they have of giving the virus to someone else (ie. thru sex, needles or birth).

The specialists and experts are predicting that in the future there will be many healthy and active parents and grandparents that are HIV+. Cool, right?

This is the video from Project Hopeful that opened my eyes. If you haven't seen it yet, it's a great 4 minute investment!

Why does knowledge matter?

We don't want to be ignorant of the plight of millions of people in our world.

We don't want to judge people or put them in a box.

People matter. All people are priceless and should be seen that way. 

For decades people have been afraid of the virus and that fear has kept those infected in hiding. There should be no shame and no judgement. Nor should ignorance keep anyone living behind a mask.

Is it necessary to divide orphans

                           between positive and negative?

There shouldn't be a great divide.

I think that if people would know the truth about the virus, there would be much less dividing. 

The Truth should be told so that 

        everyone can have a family!

Why does the truth about HIV matters to my family?

Recently, HIV became a lot more personal for me, my husband, and the 5 kids living in our home.

When we realized the truth, we knew we were called to action.

To the beautiful little girl who will soon be ours, HIV is a very personal thing too. She was diagnosed with it. She was probably orphaned because of it. 

She is not An HIV Orphan,

she is a beautiful little girl who happens to have HIV.

HIV will never define her.

Although she will manage it for the rest of her life, it will not consume her, keep her from having a mom, dad and siblings, a husband, babies, or whatever else she wants in life. Between the God of the Universe being on her side and the truth being told, anything is possible for her!

So what will this look like for us?

The day-to-day managing of the virus will be fairly uncomplicated. An Infectious Disease doctor will examine her and give us a cocktail (my hubby hates when I use that word) of drugs to be taken twice a day, for the rest of her life.

She will probably have an appointment every few months with her doctor.

When she bleeds we will use a tissue to stop the bleeding, sort of like we do with our other kids. 

We will kiss her and let her drink out of our cups and she will probably lick our lollipops and wipe her snotty nose our shoulders.

And we are not afraid.

We are hoping you will not be afraid either. 

We don't have all the answers about HIV but we continue learning. The experts don't have all the answers either. Because a lot of the medicines they are using on their HIV+ patients are relatively new, they don't have proof of the full outcome yet. They are predicting things will look better and better for HIV+ people but only God fully knows what their futures will look like. 

Let me say this again:

We are not afraid. The God who called us to this knows everything we don't and we trust Him.

We want to answer your questions and be as open as we can be. There will be some things in our little girls past that we want to keep private. But this is one thing that our family wants to keep public.

Please come to us with questions or concerns! We are very happy to talk to you about HIV and our family.

If we love each other

God lives in us

and His love is made perfect in us.

Where God's love is

there is no fear

because God's perfect love drives out fear.

1 John 4:12, 18

For more reading on HIV/AIDS visit:
The Body
Avert

For more reading on families who have adopted HIV+ children visit:
Positively Adopted
Positively Orphaned

To see the effect of ARV's visit:
The Lazarus Effect

Living in the '80's or 2000's? Take this QUIZ!

Back in the 1980's, much was unknown about AIDS and HIV.
Knowledge is power!
What do you know? And why is it important to know?


Test your HIV IQ!


1. When you hear the term HIV+, do you feel:
a. uncomfortable
b. interested
c. fearful


2. What does HIV stand for?


3. What does AIDS stand for?


4. What image comes to mind?
a. Magic Johnson
b. kids playing jump rope
c. a thin lady laying in a hospital bed


5. The rate of HIV is currently increasing worldwide.
True or False?


6. Of the 33.3 million people with AIDS/HIV, how many live in the US?
a. 1.2 million
b. 3 million
c. 8 million


7. 3.4 million of those infected with HIV are:
a. Caucasian 
b. heterosexual 
c. little kids


8. HIV can be passed from one person to another by:
a. sharing a juice box
b. swimming in the same kiddy pool
c. kisses
d. diaper duty
e. a really snotty sneeze


9. HIV can NOT be passed on by:
a. sexual contact
b. shared needles
c. birthing a baby
d. getting pooped on


10. The chances of getting HIV from an infected kid who has a bleeding knee is:
a. nearly impossible
b. unlikely
c. very likely


11. ARV's (AntiRetroViral drugs) can lower the HIV to almost undetectable.
True or False?


12. Kids who grow up on ARV's will most likely live to be:
a. college age
b. middle age
c. retirement age


Answers!


1. If you felt uncomfortable or fearful, I hope in the next 5 minutes you start to feel more comfortable as your fears are relieved and your eyes are opened. I know that was true for me.


2. HIV stands for Human Immunodeficiency Virus. Four bonus points if you got that one right.


3. AIDS stands for Acquired Immune Deficiency Syndrome. 


4. You are right! All of those pictures came to my mind. And my mind is always right. HA! 


5. False! The rate of HIV transmissions is currently DECREASING!


6. Of the 33.3 million people with AIDS/HIV, only 1.2 million of them live in the US of A.


7. There are 3.4 million kids with HIV living in our world today, many of them orphaned by AIDS.


8. HIV cannot be passed on by a brother kissing his mommy, cousins sharing a fudgecicle, bathing with siblings even if the baby pees in the tub, or any saliva of any kind. 


9. HIV cannot even be passed on through a wayward bowel movement.
HIV is transmitted through sexual contact
                                     birth
                                     breast feeding
                                     blood to blood contact (such as shared needles).


10. NEARLY IMPOSSIBLE! The infected blood would have to get directly into your bloodstream, not just an open wound. The chances continue to go downhill if the child is "undetectable."


11. False! ARV's can lower HIV levels to completely undetectable! 


12. Kids who have been on ARV's and have their HIV under control will go on to live normal, long, healthy lives! Able to get married and have babies who are uninfected by the virus. How cool is that?


Scoring!


14-16 points- brilliant!
7-13 points- still ahead of the majority
0-6- hey, now you know!


Why is it important to know this stuff?


Because there are kids out there who are HIV+ and who need families!


Maybe if we know, we will be willing to adopt them.
Maybe if we know, we will be gracious and accepting of our friends who adopt them.
Maybe if we know, we can act on our knowledge instead of out of ignorance.


And I think that would make God very happy.




For HIV facts and more facts, check out those links or visit some of these:


http://www.projecthopeful.org/

http://positivelyorphaned.org/

I have done some training and some research but I am no expert. If you find something that can be disputed, please let me know.