I hear the opening strings and that single electric guitar riff…So, as Chris Tomlin sets the backdrop for this writing I will just start. Some of you will read this and not know what to say; to think; to feel. Some of you will be angry that I have made something absolutely private so very public. But once the truth is out, the rumors begin. And I prefer to avoid speculation and get down to it...
Its by far the hardest blog I have ever written.
When I left Happy last December, I prayed that no major life changing events occur for her and she just hold on until I got back. No mother wants to see her child’s life go in different directions without her being there to love, guide, protect, and support. Being away from her was a difficult time during which I accomplished some really good things on her behalf. And I also created some hurt, to her detriment. But the time is now gone and regret only serves to create lunacy in a situation that calls for sanity. So I move on…
My plan was to get back to Tanzania and get her evaluated to solve some of her medical issues. But the adjustment back to African life, coupled with an unstable living situation, and inadequate transport, completely derailed me from my plan. Before I knew it, May 20 turned into July 20. I finally tracked down the best Pediatrician in town, of whom I made 5 different appointments to see, and all of which got cancelled. He was stuck back in America and wouldn’t see Happy and I for another two and a half months. But it was ok. He would be my saving grace at getting Happy healed. I would wait two months and it would be worth it.
So there we were. Appointment day. I grabbed Happy and my new fab housegirl Pendo, and we loaded into the car. Rats. Dead battery! I was determined to keep this appointment and begged my partner to come get us of which he was happy to oblige. Meeting Dr. Matthews and his Tanzanian colleague (of whose name escapes me now) was so exciting for me. They were both completely engaged in all my information about Happy, her origins, and my current levels of concern. But as I was talking and detailing her chronic ailments, her past treatments, and all outcomes I started to hear the voice of another women. As I was talking I ceased to be Happy’s mother and became an unbiased advocate. My intellectual brain started to clue the mommy brain to listen and process the words that were coming without filter. Dr. Matthews gave me a look and suggested an action that should have occurred to me the minute I got back to Happy. And with a confident “of course”, we were off to helping my now 20 lb. wonder.
Sitting in that hospital as procedures and tests were being performed on my little girl gave me a moment to grasp clarity. I knew what the outcome of these procedures would be. I knew what mistakes were made in the past. And I had to intellectually convince myself that there was no time for regret. But that what was about to be confirmed was the truth. And that I could no longer pretend but embrace the reality of her illness.
So after multiple attempts at reviewing her anatomy (through screams), multiple attempts at drawing blood (through screams), and multiple trips around the ground floor from exam room to exam room, the results were in.
My baby girl.Your baby girl.Our sweet Happy girl.
HIV+.
…
…
let that soak in for a minute…
There is a crazy thing that happens when tragedy meets love and education: civility. As I politely thanked Dr. Matthews and made our follow up appointment to start ARV’s, my brain began working doubletime to keep me physically walking and talking while blocking my emotions from exploding inappropriately out of my body. I gathered all our things, had a succinct yet serious conversation with Pendo about her understanding of what had just occurred, and calmly got back in the car with my partner while telling him about the events at the doctors office. And then we started talking about my car battery and drove away.
So we got back to the house, my partner left to go take care of some customers, Pendo went home, and the floodgates opened on my tear ducts.
My formally healthy baby has HIV. What just happened here? F@)%**^&$^#@*!!
I didn’t sleep much the first night. How I made it to work the next morning and function still remains a mystery. But one night of crying is all the time I had to give up on this issue. The rapid HIV tests she was administered as a baby either were interpreted wrong or performed incorrectly and we were told she was negative. But that’s all in the past now. There is physical, emotional, and mental work to be done. And more than one day of grieving is all I have time for. Because she doesn’t have a clue she is sick. And I want to keep it that way for as long as possible. Her road is hard, and her journey may be short. We need to make the best of what is.
Romans 8 keeps making an appearance in my thoughts. And not the quotable passages of inspiration.But the truths that the whole of Romans 8 reveals. My child’s body fights the atrocity of sin. She will forever bare the hardship of someone else’s failure. And I’m not just talking about the faults of her mother. Spiritually, we battle a force that uses every measure possible to separate us from the truths of salvation, of grace, of a life beyond the battered shell we are compelled to presently occupy. Happy’s birth and death may find little time between. But I KNOW her life has no end because I place her life in the hands of God. Satan keeps trying. But I keep the faith. His failure. Not mine.
Do I believe that God can perform miracles? Yes. Do I believe that He will make her HIV disappear? No, I don’t. But her miracle started a long time ago when he allowed her to be born a2 kilopremiein a developing country and to remain alive. Her miracle remained when her family gave her to Cradle. Her miracle continued with the love of one volunteer named Rachel, who placed her in the care of another volunteer named Shae.
Chris Tomlin has crept back into my consciousness again. And this is where I have to wrap up my ramblings. In a few short weeks, God willing, Happy and I will be back on American soil for a temporary visit. And as much as I want to see everyone, I also know that not everyone will be comfortable with the situation. I need you 100% or not at all. And the “not at all” is ok. REALLY. Please take the time to educate yourself. Ask yourself the hard questions. Put yourself in scenarios. Ask a health professional about it. Talk to people who have worked with HIV/AIDS patients and get their opinion. Just because you know intellectually that you will never get HIV from Happy, are you comfortable if she eats off your plate? Swims in your pool? Drinks from your cup? Can you change her diaper and not constantly wonder if this will make you sick? If your child or grandchild starts kissing all over her, will you not want to run over and separate the two? Would you let your teen babysit her? Could you be her teacher/educator? I would rather you do an honest gut check than to react in her presence in a way that both embarrasses you and confuses Happy. I would rather you politely state your distance than find yourself questioning every move she makes and only see her “as the little girl with HIV.” I won’t blame you. Serious. And I don’t believe God will either. I’ve had time to process this. And I’m really ok. But its all new for you. God placed me here as Happy’s mother because I can handle it. I am built for this. J But He didn’t hand it over to you and I’m not expecting you to know what to do. That is why I am going public. Work it out before we arrive. Happy is a vibrant, funny, adorable, miniature two year old and we have a good life ahead of us. I am determined to keep it as normal and upbeat as possible. She deserves that.
With love that is merely a reflection of God and your presence in my life,
Shae
5 comments:
We are with you 100%, no if's, and's, or but's. We watched a movie about Father Damien of Molokai a little while back, and I admit to being moved so far beyond words I can't describe it. I can't honestly say I could do what he did, caring so much for people and wanting them so much to meet Jesus that he was willing to risk contracting a horrible disease to do it. I know that leprosy is no big deal any more (in the first world anyway), but Father Damien's example should be one every Christian should strive to emulate.
So what's the point of that story? I can only say that it came flying to the front of my mind as I read your words. And it's not that I believe in any way that Happy is a pariah, but more I guess because AIDS has the same stigma (as you noted) today that leprosy did 100 years ago. But stigma isn't reality, and I don't know about you, but the Jesus I read about broke quite a few stigmas to show people God's love. And that Jesus promises that some day all our pain, tears, and suffering will be taken away.
I guess that is my way of saying that we love you and Happy, unconditionally, and you will both ALWAYS be welcome in our home. Period.
Obviously I can't speak for others, but Todd said so eloquently what I feel. I am sure that there are many others who will be waiting with arms open wide when you return home.
Shae, I know you probably won't be anywhere near Maine during your visit to the States and I might in fact not be here either, but if you are and I am, there is absolutely no question. You and Happy are 100% in my life. I love you both so much!
I didn't respond immediately upon reading not because I didn't know how I/we felt but because I wanted to be able to put it into words. Then Todd beat me to it. Absolutely 100% behind you and love you even more for how you are allowing God to use you and can't WAIT to see and love all over Happy! The biggest shame to all of this is the people the are so in fear that they can't/won't educate themselves on this disease. I applaud your ability to be so understanding of ignorance and fear, I pray that I would have that. So thankful that I had no doubt of how our kids would react too. People need to take the time to educate themselves so they can be smart but still loving. I had hoped that time of stigma had passed but alas, Satan keeps it going. I/we are SO proud of you and can't wait to see you and praying that all works out that Happy can be with you! Your friends are praying even harder for you know. Love you both!!
Oh, Shae. It is so like you to be so understanding, gracious, and loving. Even providing reading material - you're something else! My heart breaks for how much pain this brings you. There is no question that this news makes no difference to us whatsoever regarding how much we love you and Happy and how much we're looking forward to spending time with you both when you get home! I believe in a gracious, powerful, and loving God - and I know that it is His strength and comfort that will surround you. Know that you are in my thoughts and prayers. Love you!
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