Today is widely known as World AIDS day and is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to commemorate people who have died. To join in this battle, we bring you a guest post from a mom who shares a glimpse into the journey of parenting her daughter adopted from China who is HIV positive. We also want to share three waiting children for whom adoption equals a future.
I opened the envelope. I began to read through this new information we just received about our child. Our child who has been a part of our family for quite a while. New information about a child’s history is so precious and so appreciated.
Wait. What was this? A CD4 count in the low hundreds??? A diagnosis of Aids pneumonia? My heart dropped. A whole slew of emotions hit me. Fear, sadness, anger, gratitude.
My beautiful child, who is so healthy now with undetectable viral loads had Aids? Why were we not told? Who was there with her when she was so sick and scared? How long did it take her to recover? I had more questions than answers.
I did know a few things. That this would change her technical diagnosis. That it would not change her current treatment plan. That it may mean closer monitoring in the future. That it may mean cognitive issues because of the viral loads.
I immediately reached out to other parents of HIV positive kids. I was met with a chorus of “my kid too.” I felt slight relief- others knew what I was feeling. Other kids had Aids, and are now fine.
The CD4 count is the measure of how the immune system is doing in a HIV positive person because HIV loves to attack this type of white blood cell. People without HIV have CD4 counts in the 500-700 range. This is also a goal of HIV treatment. When the CD4 count falls below 200, it means that the HIV has progressed to Aids. But just like cancer can go into remission, the medications for HIV can raise the CD4 counts back up to normal levels. Many people actually have Aids when first diagnosed because they have not had treatment yet, and do not realize something is wrong until they are very sick.
Is this what happened to my child? Did her birth parents watch her grow sicker and sicker? Did they make the agonizing choice that would save her life but cause heartache in theirs? If they had not- our child would have died. I would not even have known she ever existed.
How many kids does this happen to? How many die of Aids still even though it is now easily treatable? How many more will die?
I have too many questions, and not enough answers. One thing I am sure of- my child is a miracle. Brought back from the brink of death. There are not enough words to describe the gratitude I have that my child is alive and healthy, even carrying an Aids diagnosis.
~Guest post by an anonymous mom
Waiting Children who are HIV Positive
Rebekah is a quiet, sweet spirited, talented and beautiful girl. Her hobbies include riding bikes and roller skating. She has a servant’s heart and seems to be in tune with what those around her may need. She is described as a joyful girl and a sweetheart! Next week Rebekah will turn 13 at her group home for HIV positive children in China. This means she has one year to be adopted before she is legally too old to be adopted. Children with HIV in China cannot get treatment at most hospitals, cannot get an education, and cannot get a job. She is so lovable and she wants to move to America saying, “I want a family.” Rebekah is listed with Holt International, please contact them for more information.
Bree, age 13, and Bryan, age 11, are biological siblings who must be adopted together. They have tested positive for HIV, which is controlled with daily medication. Bree and Bryan live in a group home with other children who have also tested positive for HIV.
Both children attend a private school. Bree is an excellent student who especially enjoys her language classes, and her math scores are also very high. She loves to read and does her homework consistently. Smart and well-behaved, Bree has good friends in school and keeps an eye out for her brother.
Bryan is a confident, independent boy who likes computers and playing sports. His caregivers describe him as a “free soul” who often chooses to do his own thing rather than going along with the group. Bryan’s behavior in school is good and his teachers have no complaints about him.
Bree will age out of the adoption process when she turns 14 in June 2016. These special siblings need a loving family to come forward soon. Holt International is now offering a $5000 grant to the family that adopts these children. They will also be setting up a Special Blessings contribution fund to help their family with the cost of adopting 2 children at one time. Please contact Holt International for more information on adopting these siblings.
When we started the adoption process for the second time, we knew things would look differently. Adopting a child through the Special Needs program in China was a huge step of faith for us and we had no idea what the next few months or even years would look for our family. While we were very excited to add to our family, there was definitely a level of fear as we entered a very unknown process.
At some point early in our process, I asked my husband what he thought about specifically pursuing a child with hearing loss. Neither of us had any special skills that would make us great parents to a child with hearing loss. No experience. What was a hearing aid? Didn’t know sign language. Nothing. We had already filled out that dreaded sheet of paper indicating which special needs we would consider, hearing loss being one of the many, but still the Lord had placed this on my heart. We ended up deciding to let nature take its course, not limit the Lord to a child with hearing loss and waited patiently for a referral.
Imagine our surprise at an early morning phone call from our social worker with the file of a 16-month-old baby girl from Huazhou, China… who was profoundly deaf. I’ll be honest, she was ours before I ever read a word about her or laid eyes on a picture! But I did let my husband have a say in it before we officially said “YES”!
We spent the next four months learning all we could about children with hearing impairments, the deaf community, and what we could possibly expect. I have worked with children with special needs most of my life and had many connections in the early intervention world. I made many phone calls to my therapist friends and picked their brains about what kind of things we needed to know about bringing home a profoundly deaf toddler. I searched every website I could get my hands on and joined many Facebook groups for parents of children with hearing loss to learn about the day to day issues these parents were dealing with. (But please remember to take everything said in Facebook Land with a grain of salt…. while I learned a lot, there’s also a ton of info out there that is just plain wrong!)
To say I was overwhelmed before I even held my daughter for the first time was an understatement.
One of the best things that happened before we even accepted our daughter’s referral was being connected with an audiologist at a local clinic who was able to review Ellie Kate’s file from China and give us some idea of what to expect before she even came home. She answered every single question I had (and there were a lot), honestly and openly, giving me best and worst case scenarios. She was able to look at the hearing tests that had been done in China and tell us that, based on those tests, our sweet Ellie Kate had bilateral profound sensorineural hearing loss which was later confirmed once stateside.
Once Ellie Kate was home we spent a few weeks just getting used to our new normal (and getting over that dreaded jet lag). Then we jumped into figuring out the best way to help her. It was very evident that Ellie Kate was pretty severely delayed across the board. But most of those delays were either from her hearing loss or environmental, due to her time in the orphanage. She was 20 months old, only 13 pounds, obviously not talking, barely sitting up, and taking nothing but bottles when she was placed in our arms.
We determined that our main concerns were focusing on her learning to listen and eating. So referrals were made through our state’s early intervention program and she began seeing a developmental interventionist who focused on working with children with hearing loss and also an occupational therapist to help us with some pretty significant feeding issues. Physical therapy was also recommended, but in our effort to keep her world small and have as few folks in contact with her as possible while we worked on bonding and attachment, we declined PT. She was quickly motoring through those physical milestones as she was given the freedom to explore her new home and had mastered crawling, cruising, walking, and running by her 2nd birthday.
Occupational therapy was also short lived as she eventually figured out all this food we were putting in front of her was actually really yummy and went in her mouth instead of tossed on the floor. She never really exhibited too many sensory issues with food, it was just a lack of exposure and not knowing what to do with food once it was in her mouth. Once sure figured out how to chew and swallow something more than milk, she has never stopped and is a great eater. We still have trouble with meat, but she will eat almost anything else we’ve put in front of her.
Our next steps were figuring out how to address her hearing loss. After an initial appointment and sound booth test with pretty much no response from Ellie Kate, we began the steps towards cochlear implants for her. In the meantime, she was fitted with loaner hearing aids. Many insurance companies will require a trial with hearing aids prior to approving a cochlear implant to prove that the child can’t achieve/hear speech sounds needed to learn speech without further assistance, but this also began to stimulate Ellie Kate’s auditory nerves – something that hadn’t been done at all in her short life.
One important question I had in the beginning: What’s the difference in a hearing aid and a cochlear implant? While both could be used for the type of hearing loss Ellie Kate had, a hearing aid amplifies sound and a cochlear implant is a surgically implanted device that turns sounds into electrical energy that stimulates your auditory nerve. Hearing aids typically are more suited for a person with mild to moderate hearing loss. And cochlear implants are used for individuals with severe to profound hearing loss. Ellie Kate fell into the category of profound hearing loss and really received little sound benefit from her time with her hearing aids.
An appointment was made with an ENT/surgeon who specialized in cochlear implants, and we were scheduled for several tests. They sedated Ellie Kate and completed an ABR (auditory brainstem response) to get a more accurate picture of her level of hearing loss and a MRI and CT scan to check the anatomy of her ears. Her first ABR showed fluid in her ears, which led us to place tubes and repeat her ABR. The tubes did nothing to change her level of hearing in the end, but ensured that those little ears stayed relatively healthy and infection free during this whole process. Her MRI and CT came back with almost perfect results. Besides everything just being much smaller than anticipated for a child her age, the anatomy of her ear was great, her auditory nerve was present and intact and she made a perfect candidate for a cochlear implant!
We scheduled her surgery and on December 23, 2013, Ellie Kate had her first cochlear implant placed in her right ear. She was almost 27 months old. This part of the process was placing the internal device that include the electrodes that were inserted into her cochlear to help her hear. Even though it seemed nuts to me, this surgery was done as an outpatient procedure and after a long day at the hospital we were sent home that evening with a sleepy and slightly cranky toddler who looked a little like a human q-tip. She kept her fancy “hat” for about 3 days until we removed it per the surgeon’s instructions to find a very clean incision, neatly hidden behind her little ear. Her face, eyes and ear were pretty swollen the first few days, but other than some longer than normal naps for a few days, she bounced back to her old self. We even traveled (surgeon approved) to visit family for the holidays several days later with no problems. Ellie Kate just sported her fancy footie pajamas instead of her pretty Christmas dresses to keep from pulling things over her head while her incision healed, but that was a small price to pay for what was to come for her.
She had a follow up appointment with her surgeon the next week and on January 3, 2014 we visited her audiologist where the external piece of her cochlear implant was activated and she heard for the very first time! She didn’t give us one of those famous YouTube worthy responses, but watch those eyes….she knew something was up!
Now was when the real work began! She was now seeing a speech therapist, was in a weekly playgroup at the local deaf/oral school with a Teacher of the Deaf, and continued to see her developmental interventionist to keep catching up on her overall developmental delays. Ellie Kate had never really heard sound and had to be taught how to listen and respond. We spent a LOT of time just making a whole lot of noise and training her to respond! And gradually we began to introduce sounds and words to progress towards talking.
She did well wearing her implant from the beginning, but had trouble adjusting to sound each time we would put it on in the mornings and after nap times. There were many tears shed (hysterics, really), but we took it in stride and gradually her response to sound went from scary to something she was asking for before I could even get her out of the bed in the mornings.
We also had frequent appointments with her audiologist whose job was to continuously check her hearing, ensure she was hearing at her absolute best and make any adjustments needed to her cochlear implant. These appointments were called “mappings” and included sound booth tests and hooking our “ear” up to the computer to check things out. Different programs were made that were created just for Ellie Kate on her implants and during the time between her appointments, we were able to gradually increase the volume at which she was hearing to ensure that we didn’t overwhelm her with too much noise too fast. Ellie Kate always did great as we progressed through her programs and we quickly had her hearing at her maximum level.
After having her right ear implanted, we soon began talking with her audiologist and surgeon about having the left ear implanted as well. God gave us two ears for a reason and we knew that being able to hear with both ears would only help with her speech development and other things like localizing sounds. About a year later, on January 19, 2015 at 3 years and 3 months, she had her second implant placed in her left ear. The process was very similar and on February 3rd, we introduced Ellie Kate to surround sound hearing!
Ellie Kate’s progress has been steady, but slow. She is a great listener and her receptive language has increased by leaps and bounds, especially since her second implant. Her speech is still very much delayed, but she is currently having a little language explosion and we hear new words from her almost daily! She is beginning to use single words to express her wants and needs and as with most kids, has perfected “no” and “mine”. Patience is key around here. I have to remind myself that even though she is 4 years old, she’s been hearing less than 2 years so I can’t expect her language skills to be at a 4 year old level.
She graduated from home-based early intervention at 3 and has been attending our local deaf/oral school several days a week since then. She is currently in her second year of the 3 year old class (perks of a late birthday!) and still sees her speech therapist several times a week. Having her at a school where the teachers are trained specifically to work with children with hearing loss is something I can’t duplicate at home and has been great for Ellie Kate.
I am blown away daily by the technology that allows Ellie Kate to hear. It’s crazy to think about the delicate, but powerful device that has replaced her natural hearing and allows her to go from silence to hearing almost everything! Unfortunately that worry in the back of your Mommy brain that all this is technology and sometimes technology fails has rang true for us over the last few weeks. Due to a “device migration”, very uncommon, I was assured, we will be having surgery at the end of the month to hopefully re-secure or possibly replace her left implant. We aren’t 100% sure why, but her internal piece has slowly moved itself from its original placement and is migrating down her neck (for a lack of a better way to explain it). She has been unable to wear the external part of her cochlear implant during this time, which means she’s down to hearing with one ear. We fortunately have a great team supporting us and they have done everything possible to make this hiccup in Ellie Kate’s hearing journey as painless and as easy as possible.
A few extra notes…
Insurance: Another question I get often is…”Does insurance cover that??” And fortunately, I can reassure them that it does! We did make sure that our insurance policy covered audiology services and speech therapy from the beginning. I have run into a few folks that unfortunately don’t have coverage for audiology services. The past few years we have actually been on a high-deductible plan through my husband’s employer. Planning ahead and doing the math, we knew that this was going to be cheaper for us in the long run than your typical 80%/20% plan. We have hit our out-of-pocket maximum the last few years as well with her surgeries and other appointments, which is scary, but has the added benefit of everything being paid at 100% once we get to that point. Cochlear implants are expensive, the parts are expensive and it’s very unnerving to receive that statement for the surgery that totals nearly $200,000, but that’s what warranties and insurance policies are for! Do your homework and know what your policy covers. And take advantage of foundations or groups willing to assist with medical expenses. Many children’s hospitals are more than willing to work with you on the financial side of things and want, just like you, the best for your child.
Genetic Testing: At the beginning of this year, we started the process of genetic testing. There are several syndromes that are connected to hearing loss as well as different genes that can cause hearing loss. While knowing the cause of her hearing loss wouldn’t change anything for her or us, not having any family information led us to do a little investigating to see what we could find out. After a visit with a genetic counselor and doctor and a whole lot of blood work, we unfortunately came up with no answers as to the origin of her hearing loss.
Sign Language: Many people ask if we know sign language and we do use signs with Ellie Kate, but what we know has all been self-taught (despite the ASL class I took in high school) and is always accompanied with a verbal word to reiterate her listening skills. Personally, I would like our whole family to continue to learn sign and I want Ellie Kate to be able to sign as well. ASL is just another language and could benefit our family in many ways!
Daily Life: We get a lot of questions about how Ellie Kate’s special needs impacts our family dynamics and our other children. Having a child who is deaf and wears cochlear implants has done almost nothing to change our day to day life. It was honestly a bigger change adding a third child (parents now outnumbered) to the mix! Her hearing loss doesn’t slow her or us down. We are still very active in all the same activities we did before Ellie Kate joined our family….church, school, sports, playdates, etc. She goes swimming and plays in the sprinkler. She jumps on the trampoline. She watches movies with us on family movie night. She loves (LOVES!) music. She dances and spins. She runs and flips and climbs. And if her “ears” fall off, we just stick them back on! Yes, there are more doctor appointments. Yes, we have weekly therapy appointments. Yes, I now drive 45 minutes one way to get to the best school for her. But it’s all just part of life now and is what we do to make sure she is thriving. She has her own little bag of cochlear implant supplies that goes with us when we travel. And Mommy has had to learn to remember to bring along extra batteries for those all-day outings!! Because she lets me know when she loses sound to one of her ears!
Our journey to help Ellie Kate hear is similar to many others, but each step has been special and precious to us. If you have any questions, feel free to contact me at firstname.lastname@example.org. Much of her journey is also documented HERE, but I’m giving you a fair warning that I haven’t updated it in a while!
For more information about hearing loss, check out these great resources…
How long must I wrestle with my thoughts…? – Psalm 13
Adoption awareness and orphan care have become a life’s work for us, a calling bigger than adding children to our family. It’s seeped into our faith, hearts, conversations, serving, friendships, and Instagram feeds.
Though our first steps in were tentative, three adoptions later, we are a family flying the adoption banner. We’ve compiled dossiers, read books, received grants, fundraised, waited, travelled, and attached. We’ve also served, bought t-shirts, spoken, written, advocated, and conference-d. We’ve started an adoption ministry, urged our church to offer an adoption grant, and served on mission trips. We’ve jumped onto the bandwagon and we’ve driven it too.
But just because we wear the t-shirt doesn’t mean we’ve got it all sorted out.
This year, this veteran adoptive mom found herself rattled by Orphan Sunday and National Adoption Month. I love the awareness it brings. It stokes the fighter in me who wants to shout at the world to stand up for vulnerable children. I pray that we’d all be outraged that families give up their children because they can’t afford food or medical care. That we’d not be OK with kids growing up in the US foster system or in the world’s orphanages. That the world would see the redeeming beauty of adoption.
But the truth is, I’m still in process with my thinking, and my understanding has layers now. I wrestle with how best to “defend the fatherless”. I wrestle with how to help in a way that doesn’t hurt. I wrestle with my role and my motives. I wrestle with my own apathy and my own helplessness. I wrestle with how much of my kids’ stories to share and with what words to use. I wrestle, and I pray you will too.
Our family was given the gift of three children birthed in China, and they are perfectly fitting puzzle pieces. But, I don’t think God intended them for our family or that we saved them. I wrestle with that thinking. Rather, I think He can redeem any of the losses or the traumas of this broken world, even parents having to give up their children. We are merely grateful that He chose us to receive these beautiful gifts. They are cherished children now, but we didn’t save them. As much as I’d love to believe that, we just don’t have it in us. It was us who were saved. Us who could have missed it. This life turned upside down by adoption and these glimpses into brokenness. This life less comfortable and full of heart checks.
We are just a crazy, under construction family blessed by adoption, redeemed by God, wrestling with how to see with His eyes and love with His heart. Like so many of you, we’re a big mess with rattled hearts.
I’ve come to realize that God is a fan of heart-transforming wrestling. I can say now that I’m grateful for how adoption stretches my trust, comfort and thinking. From the signatures on our first application, we wrestled to understand the wait, the red tape, the apathy of governments, and the sheer number of children without birth parents who can raise them. We just couldn’t fathom why adoption was so hard when so many wait. One side of my brain gets angry with God and the other knows to trust that He’s good. I pray that even with the hard questions, that I will trust His goodness. I pray you will too.
I don’t yet have tidy answers to my questions, and I don’t suppose I will this side of heaven. This is messy redemption business happening in a broken world, and I think grappling is part of the package. This questioning has forged a sweet, new understanding of who He is to us, to our waiting kids, and to the world’s fatherless.
Years ago, my fired up for orphan care self landed in Zimbabwe to serve kids in group homes. I arrived planning to serve and save and left unsettled and having not saved a soul. One afternoon, while painting strokes of blue paint onto the wall of a home alongside the teens that would inhabit it, I contemplated the words Save and Orphans written in giant letters across my t-shirt. Knowing they could read English, realizing that I was nobody’s savior, and seeing that these “hurting orphans” were not just a cause, but souls with beating hearts, thoughtful minds and stories beyond my comprehension, I felt differently about my well intended t-shirt. My mindset shifted, and though I still fail, I’ve been more carefully considering my words ever since.
Now as I parent three kids who know great loss, words matter. I don’t expect to always say the right thing. I don’t have that within me either. It’s just that I want to intentionally tell our story, while still protecting and honoring theirs. I want to consider first how my kids would/will hear my words. There are just too many complexities within parenting from adoption that I don’t have the luxury of ignoring. I’ve made mistakes in this, but I’m learning. I desire to honor God, protect the hearts of my kids, and “look after orphans and widows in their distress”, so it’s a dance I want to dance prayerfully.
Honestly, I’m just beginning to process how my need to feel good, matter, and belong within the adoption community might subtly sneak into my mindset when serving, advocating, and posting on social media. God’s given me passion, but I’m learning to pause before I act, speak or write. I’m praying that moment by moment, I’ll defer to His guidance in first shepherding my kids’ hearts.
My National Adoption Month prayer is that together we’d wrestle with our role on behalf of vulnerable children. That we’d be shaken by what we’ve seen, what we know, and what we’ve been called to. That we’d wrestle with whom and how we’re called to love. That we’d openly celebrate the beauty of adoption, passionately advocate, and prayerfully consider how to do it well.
“Why don’t you look like me, Daddy?” “When did I come out of your tummy, Mommy?” “Why did my “real” Mom not want me?” “So, you are still my real parents, or are they my parents?” “Will you ever leave me?” If you are an adoptive father or mother, questions like these from your child …Read More
Our adoption journey started with two infant adoptions from South Korea, in 2008 and 2010. Our first was a healthy baby boy; our second, a daughter with limb differences. When we considered adding to our family again, we decided to adopt an older child and looked into the China special needs program. We pondered the …Read More
Thanksgiving was just a few days ago, and I find myself reflecting on all that I am grateful for this year. I filled my belly with turkey, Mama’s dressing, corn pudding, and pies while sitting around a table with some of the people I love most. I celebrated the presence of my new son and …Read More
Chad and Tad are twin brothers who are 3.5 years old. They were found as infants and determined to be premature and of low birthweight. After a few months of careful care provided by their orphanage, they grew and matured enough to be sent to foster care. The two brothers have lived in separate foster …Read More
Gastrointestinal Issues. These two words changed our world and lives forever on December 2, 2012. My husband and I had poured over the list of special needs provided by the Waiting Child Program at our adoption agency and chosen those we felt we could handle emotionally, physically, and financially. Gastrointestinal issues was a special need …Read More
“I not only have my secrets, I am my secrets. And you are yours. Our secrets are human secrets, and our trusting each other enough to share them with each other has much to do with the secret of what it means to be human.” – Frederick Buechner Be gentle with me, dear reader. Please …Read More
I realize now that when we first brought our children home, I had an undefined, but deeply felt and well-meant desire. However, I have also realized that my desire was not exactly what God had in mind. Let me explain. I wanted our adopted children to be so loved, so secure, so encompassed in the …Read More