today I am really happy for my little anonymous blog. I need to write and I don’t want people to read it – not the people involved. Here’s a little vague bit of background info: Spidey loves to play sports. Spidey is very good at sports. Spidey does play sports. Spidey is our HIV+ child. None of our other kids play sports. I have asked God many, many times, why does the child that has hiv have to be the child that wants to kick, throw and bounce everything in sight. Doesn’t God realize that this is going to make things more difficult? Couldn’t he have built Spidey with a desire for all things non-sporty? The answer is of course, yes, He could have. And He didn’t. He designed Spidey and every part of him, knowing what his life would look like. Knowing the disease that would live in his body. And God called us to live openly about his status. God doesn’t call every family to live openly, but He called us. We know this. We feel this if FOR him - even though there will be hard days along the way. Ok ~ everyone caught up?
It’s a strange thing living openly, because not everyone knows, but you kind of walk through life assuming everyone does. And then you have these moments where you look at your spouse and say “Does so and so know? Do we need to tell them?” Recently, we had one of those moments – with Spidey’s soccer coach, and soon to be basketball coach, and father of his best bud at school. {just to be clear – it’s all the same guy} So I started praying about it and for a while have been feeling like we need to tell them – knowing that they {he and his wife} could find out at any time from the TONS of other people that know, and really wanting them to hear and get the information from us. I tried setting up a time and it just didn’t work and so I ended up emailing him a super long email.
In the email I explained what you need to know how hiv is spread and how it isn’t spread. How we decided to live openly and how we were advised {sometimes over and over again} NOT to live openly. I explained how the miraculous the meds are and what an undetectable viral load means and what it doesn’t mean. And I pointed out that we are not legally required to tell anyone – even coaches. And then I shared that the most important thing to us is that Spidey is respected and loved and treated with kindness – treated the same way he’s always been treated, and that if coach didn’t think he could do that, then we need to know that right away – before basketball starts.
He emailed me back a very nice email. 5 years ago, it’s the email I would have sent back. Shocked, unsure of what this means, unsure of how he’s feeling and needing some time to process. I must point out – it really was a great response. I’m very grateful for his kind words, however, it wasn’t the email I wanted to get. When I got the email I was standing with my husband and my bff and she said – “It’s a great response – think about what he’s feeling and this is really surprising for him – Mama, it’s a good email!” And I agreed, because of course, she is right. And then all evening I struggled. It’s not the response I wanted. I wanted to hear – “Wow – thanks for informing us. We are super glad to know and this doesn’t change anything – we love Spidey and I’m so excited to coach him in basketball. We totally get it and completely informed about hiv and aren’t freaked out by you and your son at all!” I know. But a girl can dream, right?
Of course I didn’t actually expect that. But I did walk through the rest of my day silently and almost sub-consciously repeating my new mantra….”please prove them wrong. please prove them wrong. please prove them wrong.”
{them would be the doctor, nurse and AIDS resource employee who told us it is absolutely, positively the wrong thing to do to live openly}
I’m fighting feelings of complete and utter vulnerability. This disclosure was really different then any we’ve done before. I remember telling our parents and that was hard, but in a different way. We know and are secure in the fact that they love us and are for us. We didn’t think that anyone would throw up their arms in frustration and say “we’re out! can’t be a part of this!” and of course, they didn’t. We told close friends who are in that same category – totally safe. Then we started telling people that we know, but aren’t in that tight inner circle of relationship that you interact with every day. And we knew that there might be people that would turn and walk away from us…and no one did. Then we started telling people that did feel pretty risky – people that we could see might not be able to handle this…family members that have struggled with racism, family members who have struggled with hypochondria, and truly lived afraid of disease and injury, my 90 year old Grandma. We sat ready, prepared for people to walk away from us…and no one did. I’ve talked to several people who are completely uninvolved in our lives about hiv – university classes and students, people in ministry, women at a church retreat, ready for the one person who is going to walk up and spew ugliness all over me…and no one did.
So this disclosure is so very different because it’s the first one where Spidey is at risk and not me and Papa. All of the other “big” disclosures happened before he came home. If people walked away – he wouldn’t have known. He wouldn’t have felt it. This one he would feel. This one would really hurt – HIM. So I know there are some of you reading this saying, see – that’s why you don’t disclose. But that’s not where God led us. That’s not where we landed. We landed in a place that knows there will be very hard days that really hurt and in the long run – it will be worth it. Spidey will never have to wonder “what if”. What if they knew the truth about me? Would they walk away? Would they still like me? love me? Would they still want me on their team, in their class, as their friend?
Today the rubber hits the road my friends. And God is with us. He has led us this far and will not abandon us now.
I’ll keep you posted. Please pray for coach and his wife. Pray that they let their hearts be ruled by love and rational thinking and not by fear. Pray for us, that we will be still before God and provide the time and space people need, that we will remain strong in the truth of God’s word.