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Thursday, January 13, 2011
Living life with a child that is HIV+
The past year and a half has been filled with excitement, sadness, despair, hope, encouragement, discouragement, love, mischief, anger, miracles, healing, and more HOPE. For those of you who have been reading my blog for a long time, I am going to take you on a stroll down memory lane.....
After much prayer and a complete peace that Josie belonged to us, Mike and I made our way to Uganda to bring her home:
Day 1: I made my way to find little Josephine. As I entered her room, they had stripped all of them down to just their nappies,ready for breakast! She did not want much to do with me until her tummy was full and THEN she sat in my lap and didn't leave for the while day! As I sat beside her on the floor while she ate I looked into each of those babies eyes and tears spilled out of my eyes. It was very evident that she was very ill and was in need of medical care...little did we know how much....
The next few days were full of paperwork and a preliminary doctors visit before court. After going to the doctor, I had nothing left, so Mike posted:
"The reward for considering the helpless is not just the end result, but the pain, the heart pain, that accompanies it. It is cleansing to hurt when God Himself hurts; it is a good thing."
A good friend of mine gave me that quote 4 years ago when I was struggling with some tough issues surrounding our first adoption. I keep a copy of it in my office so that i am often reminded of its truth. Today it is more real than ever. I really dont even want to write this because I just dont have a lot of words to describe how we are feeling. I just have a pit in my stomach as I write this.
Josie is sick. During a routine exam yesterday, she tested positive for HIV. She had tested negative before so this was a shock to everyone. At this point we have more questions than answers, so we just ask that you pray for us, for Suzanne whose mother's heart is ripped to shreds right now, for Josie that all the diagnoses and treatments would begin asap and that her little body would begin to heal, for our children at home who are also hurting over this news, for wisdom and clarity for our family as we try to process what this means, and that someday we will see the good part of the pain we are feeling. Thank you all for praying. Thats all Ive got right now.
The next few weeks were filled with hurt, anger, desperation and determination to get this little angel home and feeling better. Mike came home to the US, while I stayed in Uganda and finished all of the paperwork/medical care that needed to be in order before we were able to bring her home. Thankfully, the Lord blessed me with Dana Keck and Renee Manuel to be there with me so I was not alone. I would crawl into bed with my sweet friend/sister Katie and and we would cry together. When it came time to leave and come back to the US without Josie, I pulled her out of the baby's home and left her with Katie and Auntie Kristene who cared for her. They fed her, loved her, and gave her the medical care that she needed.
Aunti Kristene..my angel on earth
Auntie Renee...prayer warrier
Autie Kate...who Josie loves more than ANYTHING or ANYBODY on earth
Auntie Dana letting Asher call home and talk to his daddy and brothers and sister...the adoption process was a difficult one that will FOREVER bond our mothers hearts together!
After several weeks of being home, WAITING for the paperwork to approve Josie's homecoming, I traveled back to Uganda alone to bring her home. Once my feet hit American soil, the next few months were full of chicken pox, doctors visits, chest x-rays, a LOT of blood drawn, a TB nurse coming to my house everyday for a year to get rid of the TB, eye doctors visits, and eye surgery. Looking back it is really all a blur....it was a COMPLETE whirlwind of medical events!
(haha)
Once little sister started having energy and feeling better...the mischief started! AND I AM TALKING 3 YEARS OF PINNED UP MISCHIEF!!!!
I grew so weary of cleaning up toilet water from the floor, that I finally handed a mop to each child and let them clean it up.....GALLONS of water!
these mischievous pics could go on and on, but I have to keep this post somewhat short!
While all of the above was difficult in a physical way. The hardest part of this journey has been the emotional part. If we had known about Josie's diagnosis, Mike and I would probably not have traveled to get her out of fear. TB AND HIV...are you kidding? We have 6 other children! While her sickness surprised us, it was NO surprise to our MIGHTY God. Because of that, we hold tight to the fact that he gave her to us for many reasons. One of which, is to share her story and educate people on HIV/AIDS. We received many emails asking us if we thought it was a good decision to share her diagnosis. So, one by one, I wrote back explaining that the best case scenario would be to ask Josie what she wanted us to do. Since that is not an option, the other option is for her AND our whole family to carry a secret every day of their life. For our family, we felt that shame would come with that. Who wants to hide something (that you had no control over) for the rest of your life? SO, we are teaching our children that Josie is a child of God. She is perfectly and wonderfully made, and while the HIV is a part of her life, it does not define who she is. We have used HER story to bring my sweet Savior glory over and over again!! It is a redemption story...a story of beauty from ashes....a story of miracles. But people did not want to hear truth. People stopped coming to our home. People were nice to us and talked behind our backs. All of a sudden...we were really "radical."
The balance of keeping her life normal and not a bubble (i.e. school, church nursery, every time she falls... friends/family asking "is she bleeding? is she bleeding?") versus my mothers heart that aches because I want everyone else to see her for the joy that she brings, not the harm that she might cause. My heart desires every one to view her like Christ does...perfectly and wonderfully made. Because she IS. This side of heaven....probably not gonna happen. My heart holds on to the fact that He gave her to us as a gift, and she has changed our lives for the better... forever. If everyone could receive a gift such as this, our world would be a changed place.
So, the infectious disease doctor called yesterday and I heard the word that our family has been waiting for...UNDETECTABLE. THEY TOOK HER BLOOD AND COULDN'T FIND ANY HIV IN IT!! the meds are working. Her immuity (cd4 count) is exactly where it needs to be. She will always take the meds...for the rest of her life. But she is well. They can't find the HIV anymore! HE is using her for his glory. There have been at least 15-20 adoptions of HIV+ children because of her story. Her vision is cleared now, she has three sisters and three brothers, a mommy, a daddy and a Savior that is going to bring glory to himself OVER and OVER again throughout her life!
My God is a MIGHTY God of miracles. seeing is believing and I have watched miracles unfold more than EVER in my whole life the past year. I have clung to HIS promises in the depths of despair. He is the I AM. He IS all that we need, and I am so thankful to be apart of HIS story.
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About Me
- suzanne
- I am a lover of Jesus. I have the most fabulous husband that anyone woman could ask for. The Lord has blessed us with 7 beautiful children. I started this blog so that friends and family could follow our trip to Uganda to visit Katie Davis. I have decided to keep blogging to help bring orphan awareness to the world around me.
73 comments:
I love "radical"..."radical" is awesome!! I think "radical" lets you know your doing something right. Your story is so beautiful...Josie's story. What a sweet (and funny) amazing blessing to your family!
the BEFORE AND AFTER is all you needed to post ... OMW ... It speaks volumes to the heart of the LORD ... thankful i can journey w/ ya sister !!
So amazing! I didn't even know that was possible. She is a beautiful light!
Thank you for sharing.
Simply Beautiful
your story is so inspiring and brings so much glory to Him. thanks for being honest and open and real! i hope you know you - not just your family - but YOU, Suzanne - are prayed for often!
Praise the Lord!!! She is just so gorgeous and she is a miracle. My heart swells reading this post. God is good.
Precious! Thank you so much for following God, even when it would have been so easy to walk away. I have tears in my eyes. God is so good, all the time!
Suzanne, I have followed your blog ever since you went to get Josie Love. Today, I am rejoicing with you and praising our Savior!! God is SO faithful and he does use our public stories of these little ones to bring Him glory and to encourage others to walk in obedience, not fear. After we accepted the referral for our daughter we found out that she had epilepsy and TB. The doctors in the US told us to walk away from this adoption. But God gave us total peace, and we brought her home. 5 months later the doctors did another EEG and it was completely normal! The epilepsy was gone! Our God heals! Not comparing epilepsy to HIV, but just saying, the world tells us to walk away from these kids who aren't "perfect" and we must shout our stories so that others may be encouraged. SO happy for your great news. Maybe is you're at the "Created for Care" retreat, I'll get to meet you.
Bonnie in OR
Such an incredible testimony!!!!! I can't believe she is undetectable already! Praise God! Thank you so much for being obedient and honest. God inspires us through you!
This is a miracle!!! You are such and inspiration and I can't wait to hear from you at the Created for Care conference. Sweet Josie is beautiful!
She is Beautiful and Perfect!!!! What a wonderful story! We are a family in process of adopting a child with "special Needs" and I cannot wait to share Josephine's story with my husband!
Blessings
Melissa
journeytoonemore.blogspot.com
Yay! Amen and Amen!!!!! My family adopted my sister from Romania and she was a Hepatitis B carrier, after a few rounds of treatment her DNA composition has CHANGED and she is no longer a carrier of Hep B. She doesn't even have to worry about passing it on to her children (when she has them someday!).
This story is SO similar (although the ramifications of HIV are MUCH greater than Hep B carrier), all glory to GOD! How awesome! Rejoice rejoice rejoice sister!
That is amazing! So glad to hear that she is doing so well! Thanks for sharing your story, and her story.
Wow. Wow. Wow! God is so good. *This* is what love will do! He always knows best!
Oh how our God brings "beauty from ashes"! Thank you for sharing your story. Your family has opened up our hearts and minds. We praise God for Josie's sweet, precious life!
Unbelievable. So amazing. I am just blown away.
Praise God! Thank you for sharing this wonderful story of His goodness and grace.
~Debbie
I've been following your journey, and am a big supporter of 147 Million. Praise God for this news! So happy for your family.
Amen! A praise-worthy post, if ever I've read one!
AMAZING!!! Beautiful sweet Josie Love! What an amazing story of Gods healing power. Love you mama!
I love you and I don't even know you. Thank you for all that your family is doing. Please give your kids a big hug from me :)
PRAISING THE GOD WHO GIVES US THE GIFTS WE DON'T THINK WE WANT BUT NEED MORE THAN WE KNOW!! The gifts that seem more like hardship but true out to be THE MOST PRECIOUS GIFTS OF ALL!!!
Praising the Lord for all He has done.
Josie you are ONE COOL CHICK and I KNOW GOD HAS BIGGER PLANS than what He has already revealed!
Josie you have changed my heart through this blog, brought me to tears with your smile and you WILL LIGHT THIS WORLD with HOPE!
PRAISE THE LORD!
crying tears of joy! What a mighty MIGHTY God we have! He loves Josie so much and has such beautiful plans for her life and already is using her mightly for His kingdom! She is such a blessing to my heart! I wish I could just give her a big ol' hug!
This brought tears to my eyes!!! Praise God!!!
Praise Jesus!! Praise Him!!!! We rejoice in those amazing words about JL and give Him all the Glory!!!!! Thank you for following this path He has lead you to. Your work is inspiring to so many!!!! Those pictures of how far your JL has come.... only points us to HIM!!!! We pray for you and your beautiful family often. So thankful you and Gwen have each other to share in the challenges as well as the HIGHS!!!! Xoxo to your Josie Love!
Love,Lisa
Tears are flowing and praises lifted! Thanks for opening our eyes. I know your year has been crazy beautiful and I am so thankful you have shared it.
Praise the Lord!!! I get choked up just reading that....UNDETECTABLE. Absolutely beautiful mountain completely MOVED. Gosh! God is so good! Congrats!
Oh my goodness! Praise the Lord! What a beautiful blessing and answered prayer she is . . .
Best,
Sarah
OH, Suzanne! I have tears, just thinking about the struggles God uses to grow us and get glory to Himself. Praise the LORD for His faithfulness and your obedience.
Praise the LORD for the testimony you have been.
I totally get the "not keeping her diagnosis a secret." So totally different, but that is how I fell about cathing Ellie everyday. We made the decision to tell others, her friends, anybody who asks, we explain. We don't want her to think she has a secret to keep, and there is something wrong with her. We want her to feel comfortable with who she is!
Praising the LORD with you here in Blackshear!
Robbie
Hallelujah! We are doing the happy dance over here in East TN!!! Woohoo! What a miracle and joy that sweet child is! We are in awe of our mighty God and of your family for following His call. Blessings and hug that dear child for us. I am posting a link to this wonderful story on our blog
such a glorious and beautiful story, orchestrated by Him, no doubt.
thanks for being obedient to a calling in your life. it's very encouraging.
Thank you for sharing a beautiful witness for HIM! Praise God for Josie....for your persevering even when it was really hard.... For God knowing the plan ahead of time....and not telling you. PRAYING for continued strength!
Suzanne and Mike...
We are praising the Lord tonight for His amazing provision for Josie and your family! Thank you for faithfully sharing your story... we have learned so much from your journey. Josie transformation is miraculous... the smile on her face in your last photo says it all!
Blessing to all of you!
Michelle
Hope to see you at Jane's wedding in July!
Takes a STRONG heart and a lot of LOVE to do what is right! Bringing Josie, home was the right thing to do. Here she will have a much healthier life and a happier one too.With her smile she can do anything in her power with Gods love in her. Life through your wonderful family will only show strength within.We must remember she did not ask to be sick but,does to be loved.
Praise Jesus!
This is my first time to your blog. Thanks for sharing. I have tears pouring down my face at the beauty God brings out of ashes. We are adopting(presently fostering) a sweet little one with medical challenges(much less complicated)and my heart joins with you in the joy and pain. May our hearts continue to break for that which breaks God's heart and his grace pour out through us. Praying with you!
Your posts always seems to bring out the "ugly crying". I can't remember the first time I read your blog, but I haven't been the same since and our adoption journey hasn't either. THANK GOD for that. And thank you, over and over again, for bringing Josie home and sharing her story. God used her and your family to move us towards to HIV adoption. Not just open to it but actively pursuing HIV positive children. OUr God is mighty to save and He's going to keep using Josie's story to save more + kids who needs families.
You have answered a thousand questions I've had, calmed fears that were in my heart... and they were always in the form of things that were going on in your life that you posted about. It was always a God thing. :)
Thank you for sharing your journey.
-Kryste
Praise the Lord! What fabulous news that the HIV is undetectable... and what a story He is writing with her life and the life of your family. You are an encouragement to me and many!
Yay!! I LOVE it! So excited to see what our God has in store for your sweet Josie.
unbelievable. miraculous! thank you for sharing this. I am learning more and more about adoption of HIV+ children...I think God is opening my heart to this.
No words sister. She has my heart
Thank you so much for sharing this amazing story of your beautiful daughter. Praise him for his goodness and mercy in all of our lives. Praying that more people will adopt children with HIV. Including ours. :)
What a sweet girl! I am so glad she is in a loving home and doing so much better!
I have never left a comment here before, but I had to on this post. Your words have encouraged me tremendously as my husband and I are in the process of adopting a special needs little girl from Korea. Some days I think that there is no way we could possibly do this. We have 3 other children, and the enemy tells me that I would not have time for them if I had take care of all her medical needs. God has used your story here to speak to me. This little girl needs a mother fighting on her behalf!! What expectant mother, after having tests, learns the baby inside her is not perfect, so therefore decides, " Never mind, I don't want this pregnancy anymore. I only want a healthy child......" Am I really going to buy into the enemy's lie to wait for a "heathly" referral? THANK YOU SO MUCH!! This have given me a renewed spirit to join in the battle on behalf of the fatherless!
Amen Amen Amen...LOVE this story and thank you so very much for sharing. I am a cyber buddie of Gwens and that is how I came across your blog. Your story is amazing and those "people" (I am sure many even claim to be Christians too...) that talked about you behind your backs, the ones that stopped visiting, that JUDGED...well God sees ALL and hears ALL and knows ALL and those people will be judged by Him...so may He bless you and your beautiful family for following Him and not following the world.
Such a beautiful story. Thank you so much for sharing. I think that each generation has had their own "fearful" disease. In Bible times it was leprosy. During the Middle Ages it was the Bubonic plague. In the 1800s it was TB. Today, it is HIV. Who knows what will be next? But, God has always had those who do His will and reach out to the infected. (Jesus, Himself, set the example.) Thank you for living out His example in such a beautiful way. You have opened MY eyes to the need. I know you have opened the eyes of others as well. God bless you! Keep up the good work!
I am weeping! May all praise and glory be to Him forever and ever...He is worthy! And may we all choose daily to follow Him, and not lean on our own understanding. Thanks for sharing this with us. She is a treasure! I am so happy for your family.
Awesome!!! I cried all over again just like I did when I heard the story the first time! Wow what an awesome story/testimony God has given your family!Love keeping up with you on this blog but most of all the times I do get to see you! Excited to watch Joise grow and see what God has planned for her life! Love to you all!
Terri Jones
PRAISE GOD! PRAISE GOD! An extra miracle on top of a miracle of a little girl.
Thank you for this post! God is SO good! I needed to read this today. To SEE HIS Glory, God is Still in the miracle business! May God Bless you and your family.
oh my, tears at work! What a great God and what a precious little girl! Can't wait to hear you speak in person during your breakout session at Created for Care!!!
Thank you for sharing your story. As I sit here in tears at the blessing that God has placed in your life, I am so grateful for the loving kindness of our Savior. A friend of mine told me about someone's blog that I should read and told me about so many amazing people and missionaries that it would connect me to..this is where I stumbled across your page and your story. I could go on and on, but I just want to thank you for sharing the Word of God's truth in your 'radical' life.
Chelsea Martin
Thank you for sharing your story. As I sit here in tears at the blessing that God has placed in your life, I am so grateful for the loving kindness of our Savior. A friend of mine told me about someone's blog that I should read and told me about so many amazing people and missionaries that it would connect me to..this is where I stumbled across your page and your story. I could go on and on, but I just want to thank you for sharing the Word of God's truth in your 'radical' life.
Chelsea Martin
Thank you for being honest and for educating me in the world of HIV! I had family who turned down a little baby girl whose mom was HIV positive because it was just too hard!!! Thank you for doing the hard God thing and for truly living out what you beleive. As I go forward in our adoption of two babies from Ethiopia-your story gives me courage on the days I feel crazy! Praise God for all He has done in your family and the life of Josie Love. Cant wait to see how He uses her as life unfolds!!!
"The reward for considering the helpless is not just the end result, but the pain, the heart pain, that accompanies it. It is cleansing to hurt when God Himself hurts; it is a good thing."
I believe this with all my heart.
We waiting to bring a little one home from South Africa. Our hearts have been forever changed by the children that we've met through our year in South Africa. At times our hearts have been broken, but I wouldn't change that for anything. It's made us who we are.
Thank you for sharing your story.
Beautiful. All of it. Your heart. Your daughter. Your love for the Father. Just beautiful. Thank you for sharing your story- because in you- I see Him. Love, Amy
Suzanne you don't know me- I live between James Deaton on one side and Leslie Hackney on the other- I feel like I know you and have come to love you and your family and all that you stand for. This post has brought me to tears- to see the hurt, the bravery, the betrayal, the happiness, the relief- it is as if you all have lived 50 years in one. Thank you for all you do- you are truly an inspiration to all- your children bring a smile to my face every time I read your blog.
Bless you for spreading this beautiful message and most of all giving her your love.
YIPPEEEEEEEE! What an AWESOME testimony of our MIGHTY GOD!!! And, what an amazing, beautiful little girl. We are SO THANKFUL for Josie Love's life!!!
I have followed your story, as I was at CPA for many years (the former College Counselor). I cried all the way through your post. I lost my stepbrother to HIV many years ago and know that it is a disease that loves to bring shame and fear in its wake. Praise God that you chose to walk in victory from the beginning by renouncing the fear and the secret shame. Now the victory is being made manifest so that all can "see" what you and your family chose to "see" all along. Thank you. Thank you for sharing this story which resounds with the hope and redemption of our God. We will continue to pray, knowing our God reigns!
REJOICING with you!!!!!! We do serve an awesome God! Thank you for posting so we can have the privilege of giving God the glory!
amen, amen, amen!!!!
i'm totally in love with little Josie & just your family! i'm thankful for you and thankful that you allow us to witness some of your journey here. God has used Josie & Project Hopeful to totally open our eyes to the possibility of adopting a child who happens to have HIV. i leave for uganda in just a couple weeks and i pray that He will reveal our next child[ren] while there!
rejoicing with your family at Josie's blood levels AND that glorious smile & sparkly eyes now!
redemption is beautiful.
Praise God!!! Thank you for sharing her story. It does bring glory to God!
OH MY GOSH!!! PRAISE THE LORD!!! I am sitting at my computer with tears of pure joy streaming down my face. I am so thankful for what you and your family willingly share with the world for the glory of God. HE IS FAITHFUL!!!!
What an AMAZING blog post to wake up and stumble on to today!
SO happy for you and Josie!
Blessings,
Layla
LOVE THIS POST AND LOVE LITTLE JLOVIE!!!!
This is such a beautiful post of love. Blessings on you and your precious family.
Since coming across your blog a few weeks ago, my heart has changed in my view of adoption and in raising my two children. I am so very thankful to listen to you share your journey.
Precious, precious, precious! You are a treasure and sweet Josie Love is an absolute JOY! I cried tears of joy reading that Josie's levels are undetectable! Praise Jesus!
LOVE...love the work that God is doing. Love the work that He has done in and through you and your sweet family. What a beautiful story He is painting! Such an example of living "radically" for Christ...may His glory continue to be magnified!!
I'm so happy to hear she is WELL. Poor baby must have been feeling so sick for so long before she got access to treatment. Wonderful update!!
Our daughter is UNDETECTABLE as well, as are hundreds of thousands of US citizens with HIV. Always HIV positive, of course, but it doesn't affect their daily lives AT ALL! Praise God for modern medicine! :)
So happy for your sweet girl and you!
Jesus is miraculous! There is no way anyone but Jesus could've healed Josie. I remember the day your family found out she had HIV. I know all of you were determined to get rid of it! That's what I love about the Mayernicks!! GO JESUS!!
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