living with HIV

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One of our precious ones has HIV.

It's a daily part of our lives. At 7:30am and 7:30pm, we dole out meds (currently, in Mary Poppins fashion, with a spoonful of sugar) to the child who needs them. These medicines keep the viral load so low that it's almost undetectable in blood samples. It's not a cure, but it lets our kid be a kid, playing and giggling and wrestling and running like our five children who don't have HIV.

For now, since we can't untell - especially online - about this diagnosis, we're not disclosing which child is affected.

{Honestly, because we're all a family, you could say we're all affected, even though only one of us is infected.}

I'd like to say it's a non-issue, but some friends and family members have faded away. Some have said they won't be coming over anymore. Some have said their kids can't play with our kids.

I'd like to say it doesn't sting each time, but it does. 

Oh, does it sting!

Want to know what would sting more, though? Knowing that we had the opportunity and felt the pull toward HIV+ adoption, but choosing to do nothing out of fear for what people might think about us. My heart aches with each rejection of our child or family because of three letters, but it would ache more if I had chosen the comfort of our old friends over the call to stand up for a child who didn't even have the comfort of a family or the hope for a future, given the lack of access to medical care prior to adoption.
For am I now seeking the approval of man, or of God? Or am I trying to please man? If I were still trying to please man, I would not be a servant of Christ.
{Galatians 1:10}
Our regrets about HIV+ adoption? None. 

We have none.

What do we have? A child who we love, who has changed our lives, who we've gotten to see emerge from the grasp of an illness that was destroying a little body but is now kept at bay by our amazing medical team at Duke. 

(And you know they must be amazing if a mama who graduated from UNC and a dad who hails from NC State can love them!)

We have much more than we ever had before HIV entered our lives, because while HIV is the diagnosis, our child isn't a diagnosis. Our child - and the two siblings we adopted at the same time and the three children we had before that - are simply children.

Precious, darling, energetic blessings.

One of whom happens to take medication twice a day.


~+~
If you'd like to know more about HIV adoption, check out the posts below:





This is life with HIV. Doesn't look so scary now, does it?

seven years ago

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I was trying to figure out how to nurse my baby girl.

My body was recovering from childbirth six days before.

We were closely monitoring our little one's weight with regular check-ups.

On the other side of the world, another mom was starting the same process, having given birth the day before to her first child, also a baby girl.

She fed her.

Her body recovered.

She and her husband did all they could to ensure her health.

Unlike me, though, she didn't get to celebrate the seventh birthday of her big girl.

As we cheered our precious girl turning seven yesterday, I couldn't help thinking of her first mother. In a perfect world, children would never need a second family. In the absence of disease, some of my children would never have become mine. While I am so very blessed to be their mother, I grieve too, because if our world was as it was in the Garden of Eden and as it will be in heaven, then I would never celebrate the birthday of a child to whom I didn't give birth.


Sometimes, in adoption stories, we craft the pre-adoptive history as dismal and post-adoptive stories as redemptive.

Sometimes, this is fair.

Most times, though, the pre-adoption stage had its own beauty. Just look at the common courtyard of the apartments where our newly seven year old daughter spent her days before their first family fell apart.


Such beauty.

 It's easy to glorify adoption.

But seven years ago today, another mother nursed her baby girl and expected her to walk these roads along with the rest of their family, including the siblings who would come.


I'm sure she never expected that her daughter would be going out to a birthday dinner at a restaurant in America seven years later, traveling different roads with a different family.

For the opportunity to raise her daughter and the two siblings who would follow, I am thankful.

But I'm a mother too, so I am also grieving over the hard realities that required another family - our family - to raise her children.

I hate that.

But I love this.


Such are the paradoxes of adoption.

when the mama bear has rheumatoid arthritis

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Let me start by saying that RA isn't the death sentence I once expected it to be.

Nowadays, I give myself a shot once a week (and try really, really, really hard not to cuss because dang it! they sting!), and I go along my business, albeit with a few joints that act like they're double my age.

From the time Jocelyn was born in 2007, though, until about nine months after Robbie was born, I was in pain every. single. day.

If you do the math, that's about three years - or approximately 1,000 consecutive days - of waking up every morning dreading movement because I knew I couldn't move without pain.

 First, the diagnosis of Hashimoto's thyroiditis came along, following a brief thyroid cancer scare. Since hypothyroidism, which Hashimoto's causes, can cause joint issues, we hoped getting that under control would take away the pain.

It didn't.

(It did, however, give me more energy, so that was a definite plus.)

After blood tests and an MRI confirming significant bone erosion in joints in my hands, the diagnosis came on the phone from a tactless nurse: I had just turned 25 and just been diagnosed with rheumatoid arthritis.

Since then, we've had one more child via pregnancy and four more via adoption. I've adjusted my diet. (Most didn't change anything, though I've found limiting artificial sweeteners and refined sugar can help some.) I've tried various supplements. (None helped.) I've gone the surgery route. (It helped two of my far-gone joints - one knee and one wrist - but I think better physical therapy might prevent future ones.) I've rocked pharmaceuticals. (I'm not a fan of prednisone, plaquenil did nothing, I've opted out of taking methotrexate, Remicade was wonderful but required lengthy infusions that were hard to schedule with small children at home, and Enbrel sure-injectors are my current treatment.)

Now it's not a daily consideration like it used to be.

In other words, I've found that there's life after an RA diagnosis.

thankful for this man, who serves me well even when my body fails me

~+~
For more posts about rheumatoid arthritis:


a testimony of our first year of having RA

on facts vs. truth 
{written right after the diagnosis}

on negativity on The Arthritis Foundation's FB page

on encouragement in the midst of chronic illness

on longing for heaven from a broken earthly body

on entering remission for the first time

seven years ago

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our world changed. Jocelyn, my precious girl, you were born.


You live as if you don't know the meaning of the word "conventional." You do your own thing, so it was only fitting that you asked for your candle to be in a bowl of snow cream instead of cake today.


With fashion as your obsession, you declared tonight's dinner to be a ball, and you wore a gown.

Of course.

As Robbie put on his Power Ranger get-up, you were giddy.

"Robbie, will you protect us?"

After he said yes, you smiled and declared, "That's my boy."


And he is.

Robbie might protect you, but you would fight for any of your five siblings. Without reservation. Without hesitation. Without consideration to the reality that only one of the five shares your genetic makeup.

You, my love, are already so much more than I could have imagined on that cold day seven years ago when you entered the world. Your compassion, your spunk, your exuberance... you changed our world then.

And you've been changing the world ever since.

I love you, big girl o' mine.

when the Ugandans and Taiwanese gal meet snow

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First reaction from Philip: "Huh?"


Patience: "SNOW! It is funny! It is cold! I can eat it?"


Patu didn't say this, but I'm pretty sure she was thinking, "I'm not sure what this is, but everyone else is excited, so it must be good!"


Zoe, who has been talking more and more lately, said, "Woah. Mom. Woah."


They experienced it with ALL their senses.


It's a good thing our first two offspring were there to vouch for snow.


Jocelyn assured them, "Everyone! I know this is really cold, but it's really, really fun too!"


Robbie's encouragement gave Philip the confidence to step outside.


Where he promptly become the jokester we all know and love.


Oh, these wacky and wonderful children o' mine!


{Disclaimer for the grandmothers: We do have proper snow gear for most of them, but they didn't want to trouble themselves with the time to suit up. No one has frostbite. Also, I promise Zoe wasn't outside in bare feet for long.}