Saturday, November 7, 2009

Raising Kids

Albert Einstein 
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

I'm often asked, "What is it really like raising children with HIV?"  My response may surprise you. In our family, it's really no big deal. It basically consists of medicines taken twice a day and a doctor's visit once every three months. My children are seen at St. Judes Children Research Hospital by an amazing team of doctors, staff, and even a wonderful councelor named Chris, whom my children can talk to about anything from HIV, to dating, to taking their driver's test. It takes an extraordiary individual to dedicate their life's work to helping children and these people have helped our family on so many levels; I don't know how I will ever be able to thank them enough. Having three healthy kids with "zero" virus in their blood is a gift... A miracle that I'll never take for granted. 
I, too, have an exceptional doctor here locally, and have also been able to maintain an "undetectable" viral load. My last cd-4 count (immune system strength) was an amazing 1516! I was floored by that number. How is it possible to have lived over half of my life positive (I turn 43 in a few days!!) and to be healthy? This astounds even me!  My life isn't perfect by any means. I worry, habitually sometimes, about my children, but with good cause. Just last week, I got a frantic call from the University my daughter attends. They told me she'd blacked out in class, not once, but twice, and that they had called an ambulance. My first thought was, this is life is over. What if she's had another stroke? Terrified, I somehow kept it together enough to get to the hospital, where they had already ran every test imaginable. She was fine. It all turned out alright. It was just a combination of a flu bug, not getting enough rest and her skipping breakfast that day. I told her that if she didn't take better care of herself–no more dorm–she'd have to move back home. She loves her newfound freedom, so I'm pretty sure she'll remember the "most important meal of the day" from now on : )  
So, it's not complete roses raising positive kids. As a parent, you worry, but I'm pretty sure all parents do that! For me, the most difficult part of raising positive children isn't the regimen of taking medicine every day or the doctors visit once every few months. It's the worry that perhaps one day our good fortune could run dry; that the medicines will stop working, or side-effects will present themselves. I have to be realistic. Life isn't perfect. We all will encounter bumbs and dips in our journey. Even so, I'm a realist who also believes in miracles. I've witnessed them firsthand. Today, due to recent advances in medicine, children and adults with HIV are now expected to live near normal life spans. If you're someone who is considering adopting a child with HIV, or perhaps you yourself are living with, or loving someone who's infected with the virus... my best advice is to learn all that you can, realize that every situation is unique and no matter what choices you face, don't let HIV stop you from living a fulfilling and purposeful life. And perhaps most importantly––believe in miracles because they happen everyday!  

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Positively Orphaned said...

Wonderful post! I get many inquiries from potential adoptive parents of children with HIV and their biggest concern seems to be 'what day to day life is like'. You've summed it up beautifully.

Andrea Hill said...

Suzan, I have said it before, I can just read and read your stuff. Your born to be a writer. I too totally agree with you. You pretty much lead a normal life except for the Dr. visits and life medications. Hard to believe that there is still a Stigma about HIV but I guess that's what happens when people don't educate themselves. Keep on writing this great stuff. And your daughter is just gorgeous!

Heather said...

If it's okay with you, I'm planning on linking your site in my blog post tomorrow. We have an AIDS awareness campaign going on on our blog and on fac, and I'd love some of our readers to "meet" you.

amygld said...

I loved this post! Thank you for writing and encouraging moms like me to live with joy and freedom, not shrinking back in fear of what tomorrow might hold! Keep writing.