Monday, June 4, 2012

The Truth about HIV: Life with HIV

After having their fears about transmission addressed, the most common questions people ask have been about what every day life will be like when Easton gets home.

What does life look like when one of your children has HIV? 
What will his medical care be like?
How will this affect your family life?
How will this affect Ava and Grayson?

Needless to say, I'm writing this post without any actual experience of life with HIV or of parenting a child with HIV.  So really I should probably just say that I have do idea what our life will be like!

But I won't.  Because in the last few months we have encountered several families who are open about having a child with HIV and have given us some insight into the ins and outs of daily life. 

One of the first blog posts I read as we prayed about adopting a child with HIV was from Given Much Mom, a blog written by a mom who has adopted a daughter from Ethiopia who is HIV positive.  The post was titled "HIV: Our Non-Issue." (Can you see why it caught my attention?!).  Here is an excerpt from her post . . .

"As we waited for our HIV+ daughter to come home from Ethiopia, I read other adoptive mom's blogs and sometimes wondered why they didn't TALK MORE about their child's health condition.

Now I know.

Because it is such a miniscule part of their lives that they probably PLUM FORGOT!  Weeks go by (yes, weeks) when it never crosses our minds that our daughter is HIV+ . . . except when she pops her daily pills."

I can't tell you how encouraging this post was and still is!  HIV will not define Easton or our family.   It will affect our lives, sure, but it will not rule every minute of every day!

Things We Can Expect

1.  Doctor Visits and Lab Work

Easton will have to see a Pediatric Infectious Disease doctor as soon as we bring him home so that he can begin HIV treatments.  This means a lot of blood work, which will be traumatic for him and for us.  Definitely not looking forward to this part!

Easton will have to see his ID doctor at least every three months to check the level of virus in his blood, to make sure that the medication is working correctly, etc.  Hopefully there won't be any infections or issues that cause us to be at the doctor office in addition, but that is always a possibility.

We feel extremely blessed for a variety of reasons that God has planted us in New Orleans, but most recently because of Children's Hospital.  We've already been in contact with one of the Infectious Disease doctors who will be responsible for Easton's care.  On top of that, I've talked to a case manager with FACES, their support program for families with a positive child.  I have such a peace and confidence that Easton will have excellent medical care and that we won't walk alone as we try to navigate the medical and insurance side of HIV.

2.  Medication

Until a cure for HIV is discovered (pray with us!), Easton will have to take daily medication.  The HIV drugs are known as antiretrovirals.  People with HIV are given a combination of three or more medicines to reduce the amount of virus in their blood.  This therapy is known as HAART. 

We have no way of knowing what medications Easton will be on until he gets home.  But we can prepare ourselves for strict adherence to his medication schedule, which will most likely be medication given in the morning and at night.  I'm already taking notes on several different methods that families use to remind themselves about medication time and to keep the medications and dosage amounts straight!

A new friend who has two little ones with HIV said that they are intentional about making their medication routine a time of thanksgiving . . .giving praise to God for these medications that save their lives.  This helps instill in their children a heart of gratitude instead of despising the daily medication (and it's side effects), which will be so important as the children get older and must choose for themselves to adhere to their medication plan.  This is definitely something we will focus on!

3.  Heartache

Sad, but true.  We can expect heartache to come . . . to Easton and our whole family . . . because of HIV.  The traumatic lab work and doctor appointments, the yucky side effects of the life saving medications . . . it will be so hard to watch Easton in pain and discomfort.  The stigma that is sure to come (and already has) because of fear and incorrect information . . . our whole family will surely experience the hurtful comments, the withdrawal of friends, the frustration and pain caused by those with a lack of facts or compassion. 

Some have actually questioned our decision based on this issue.  Why would you want to do something that you know will bring heartache and suffering to your family?  Is this really fair to Ava and Grayson?

I addressed this issue as I filled out the Show Hope adoption grant application and answered the question, "What do you believe to be the most important thing you can impart to your children?"

"Our greatest desire for our children is for them to know Jesus as Savior and to follow Him as Lord.  There is the temptation to desire for them to be safe or free from hurts and pains, but we are choosing to put the pursuit of holiness before any of these other things.  We know that adopting, especially a child with HIV, will create heartache for our family and will be hard for all of our children at different points in this journey, but we also believe that God will use this to refine our hearts and to make His glory known among the nations.  That is our ultimate desire.  John 9:1-3 has been a key passage for us.  We pray that through our family and this adoption, "the works of God might be displayed . . ."  We pray that our adoption will give our children a compassion for others, a biblical worldview, a realization of what God is doing in other nations, and hearts that seek to obey Jesus no matter the cost."

We love our children enough to walk in obedience to Jesus, even when that road includes suffering.

The Unknowns

There are a lot of unknowns on this journey and as we consider what life will be like having a child with HIV . . .

Will Easton come to us sickly or with no symptoms of HIV?
Will he respond quickly to medication or will we struggle to find the right combination of medicines to treat the virus?
How will people respond when Easton is home?
How will his health be as he grows . . . will we barely remember he has HIV or will we be reminded by frequent infections and hospital stays?
How will Easton and all of us deal emotionally with doctor visits, medication, and stigma?
Will he get a date to prom?
Will he get married and have children?
Will he live a long life?

And the list could go on.  We don't know all that we will walk through.

But we know Who does.  And instead of focusing on what we DON'T know, we are choosing to focus on what we DO know . . .

The Known

- We serve the Creator, the Sovereign Lord, the One who always has been and always will be IN CONTROL! (Gen. 1:1, Col. 1:15-16, Psalm 93, Rev. 4)

- God has a plan for us, a plan that is for our good and for His glory! (Jer 29:11, Rom. 8:28, Ps. 67:1-2)

- We have a mission and purpose in life . . . to make disciples of all nations by sharing the glorious Gospel  . . . we have been saved by faith in Jesus Christ!  We are equipped by the Holy Spirit for this work and promised that we are NEVER alone! (Matt. 28:18-20, Rom. 3:21-26)

- We live in a sinful world of which suffering is a part.  But God redeems and uses suffering to refine our hearts, to make us more like Jesus, and to spread His glory among the nations.  (Gen. 3, 1 Peter 1:3-7, Acts 8:1-8, Phil. 1:12-14)


  1. Cole, thank you so much for sharing this! It is such an incredible blessing to see your journey through this, and how it is constantly evidence of the Gospel in your lives! I'm praying for you guys!

  2. Such a beautifully written, truthful and informative post! I love this and especially LOVE the response to the question on the Show Hope awesome!!!

  3. Hi Cole. This is Chantelle from GivenMuchMom(dot)com. I just wanted to say how much it touched my heart this morning to read you quote me and say my post encouraged you. You just made my year! ((hug)) You're doing a great job getting the word out there about positive kids. Congrats on your new son Easton!

  4. Cole,
    I don't know if you remember me, but we went to New Covenant Church together when you lived in Knoxville. At the time, I was a young mom with a couple of toddlers and a baby on the way. I recently have re-connected with your mom on Facebook. That is how I came to read your blog. I want you to know how it blesses me to see you walking in faith, seeking to glorify God with your life. Reading this entry is so encouraging. I will be praying for you and your family. God bless you all!

    Lori Raymie

  5. Thank y'all so much for your encouragement and prayers! Chantelle ... so blessed by you and thankful I could encourage your heart as well! Lori ... I do remember you! Thanks for connecting, for your sweet words of support, and for your prayers!

  6. Thank you so much for these posts. We are in the process of adopting a little girl from Ethiopia, and I have recently been praying about whether we should adopt an HIV+ child. We haven't made any decisions, but this information is so helpful, and I will be coming back to your blog. Thank you for your obedience!

  7. Kim ... so thankful that these posts have been helpful. Praying for God to speak clearly to you and to give you the faith to obey!