So, before we dive in, let me take you back to Mila’s first ABR a couple of months ago… Her first ABR was done on June 26th while she was sleeping, not sedated. She woke up frequently and the test was stopped and started again…
I sat down with the intention of writing a blog full of hope, next steps and long term plans to share with you all. But what I ended up with was a lot of raw, tearful and honest words. I’m finally realizing that I’ve been holding myself together on the outside and not facing some of my emotions in all of this. Part of me thinks it’s selfish to grieve in this process and I shouldn’t share how I’m feeling with others. The enemy says that no one wants to hear what I have to say, that I’m wasting my time. But that’s exactly how he works. He isolates us, divides us, tells us no one cares and we bottle it all up thinking that the we’re wrong for walking out our feelings and occasionally just being sad. But that’s a lie.
So, this is me being honest and open about how I’m feeling. And in a strange way, I hope it encourages you. Let Jesus in to all of those cracks and crevices and begin working it out in you.
When we’re catching up with friends and they ask how we’re doing, how Mila’s doing, we usually respond with something like this… “She’s doing great! It’s been hard, but you know, it’s fine. She’s perfect, we wouldn’t change a thing. This is just our life now and we’ll figure it out”. But if I really search my heart for how I’m feeling about all of this, I realize that all of that’s just a face I’m putting on most of the time. So, can I just be honest for a minute?
Although we undoubtedly believe that Mila is perfectly made, I would be lying if I said I’m ok with this life for her, or “that I wouldn’t change a thing.” I would change it all in a heartbeat if I could. I don’t want her to be seen as “different.” I don’t want her to struggle or work harder at reading and writing English just to keep up with her peers. I don’t want to put her through dozens of tests, needle pokes and countless doctor appointments. I don’t want her to have brain surgery at 1 year old. I don’t want her to have therapy 2-3 times a week until she’s 5 years old. I don’t want her to struggle socially with other kids. I don’t want to make a decision by the end of the year that will determine how she experiences the world for the rest of her life. I’m not ready for that.
I just want to enjoy my kids and our family without the label of deafness. I want to go longer than a week without thinking about their next appointments. I want to be able to communicate with my kids in the car, beach, bathtub or neighborhood pool. I want to be able to calm my fussy baby with a lullaby. I want my kids to experience the world the way I do. I hate peaking my head in Bear’s classroom at church to find him playing by himself. I hate that I lose my cool in loud environments because he can’t hear me. It’s not his fault. I hate that my already-sometimes -irrational mom brain goes to dark places when I think about my kids’ safety. Can they hear that car coming? Can they hear the smoke detector? It’s all extremely overwhelming.
A lot of times when we’re out in public people stare at them. I don’t think there is any malice in it, they’re just curious. I get it, I didn’t know any deaf or hard of hearing kids growing up either. I didn’t know any families who used sign language. Right now our kids are too young to understand that others are noticing something different about them but Niko and I pick up on it almost every time. And plain and simple, it’s frustrating. I know the day will come when they both realize it but I want to keep them innocent forever. My heart breaks when I think about how nasty kids are towards each other these days and I get worked up thinking about anyone picking on my child.
Right now, in this season, my emotions are all tied up in our kids and our unique journey. (I think every mom in the history of the universe could say that.) If you’re like me, you’re always trying to fix others or distract yourself with day to day responsibilities so you’re not forced to sit in silence and really feel. But that’s not a healthy way to live (preaching to myself.) So, today I’m going to be intentional about really examining my heart and giving it over to Him. Whatever’s going on in your life today, just feel it. Go all in, be intentional. Because that’s where Jesus will meet you. He so badly wants to meet you, and heal you, there.
Every day parents make decisions that affect their children. We decide to vaccinate, or not vaccinate, feed our kids organic food, or Kraft Mac n’ cheese, allow screen time or not… and on and on. Our faith, personal experiences and political and social beliefs shape…
When we got pregnant again there was a tinge of fear that the baby would be born with hearing loss, like our first. But over the last two years as Bear has excelled and surpassed every milestone, our fears dwindled. We knew it could happen again, the chances weren’t slim, but we’d be prepared. So we thought.
Fast forward to April 22, 2017. Three weeks early, and 30 hours of labor later, Emilia “Mila” Rose Stoenescu was here. She was tiny and so beautiful. It was the most perfect delivery from beginning to end. Before we left the hospital with Mila, she had failed the newborn hearing screen twice. We knew that meant there was hearing loss, but the severity was unclear- we’d have to have an ABR to get that answer. We weren’t surprised, per se. We’d googled enough to learn that our chances of having another kid with hearing loss was close to 25%, which is crazy high if you ask me. But it was still hard to hear the news. We both expected her loss to be about the same as Bear’s; “fixable” with hearing aids. We had to wait two months to get our answer and in the meantime I’d played it out in my head that way. I’d prepared myself to hear that her loss was moderate/severe, like Bear’s, and the next step was getting her fit with hearing aids. Easy peasy.
So you can imagine when the audiologist said “Unfortunately, Mila is deaf” it was like being sucker punched in the stomach. Just like with Bear’s diagnosis day, I glazed over and experienced a million emotions in the matter of seconds.
Disappointment- Why her? Why us?
Sadness- What will her life be like? Will it be full?
Hope- We have resources.
Fear- We’re not equipped for this.
Inadequacy- I’m not fluent in ASL… none of us are.
Confusion- What are you doing, God?
Gratefulness- I’m so glad we found this out now instead of years down the road.
After the appointment we sat in the parking lot of Dell Children’s for a while, holding hands, staring into the distance afraid to break the silence for fear that the tears would start and never stop. Niko finally did. We talked about what all of this meant. There was such a heaviness in that car as we brushed the surface of what we were feeling. We asked lots of questions of ourselves, mainly: “are we overreacting for being crushed by this? How could we be upset about an otherwise perfectly healthy baby when parents are losing their children to cancer just a hundred yards away?” Then we called our families and let them know. More tears came as we had to repeat the words for the first time. The rest of the day we ran errands and tried to distract ourselves.
So where do we go from here… what’s the next step? In short, we have no freakin’ clue.
But here’s the long answer: Mila has profound hearing loss in both ears, and hearing aids are not a reasonable long term solution. However, we will put them on in the next month in hopes of stimulating the nerves in her brain as much as possible. Her doctors are recommending Cochlear Implants which they won’t put on before she’s 1 year old. Cochlear implantation is considered in the medical community to be low risk and highly beneficial in most cases. But it’s still invasive brain surgery. You can read more about it here.
Niko and I go back and forth every day about how we’re feeling in regards to the surgery. Our conversations go something like this:
“Yes. We must do the surgery. We have to give her every opportunity to thrive in life. But if we say yes to the surgery are we really saying we don’t believe she could have a full life if she were deaf? Or worse, if we agree to cochlear implantation does that mean we’ve given up hope that God could heal her? But cochlear implantation works! Haven’t you seen all those cool videos online of people hearing for the first time?? But what if she doesn’t want to be hearing? What if she wants to be deaf one day, just the way God made her? Is it selfish of us to force her into the hearing world because it would make communication easier for our family? Is it selfish for us to not do the surgery, forcing her into the deaf world, out of our own fears that kids could make fun of her later in life? Will we be accepted by the Deaf Community? Is it selfish of us to ask our whole family to learn ASL if they want to communicate with her? How can we possibly make that decision? Are we making this about us? Are we doing enough?….”
And on and on….
In our process of gathering information we’ve met several families who are farther down the road in this journey. They’ve all been so incredibly kind and let us ask a million questions. Some of these families have done the CI for their child, and others haven’t. I’ve also joined several groups online on both sides of the fence, and both are extremely passionate in their position. It’s all overwhelming to say the least.
But through all of this we’ve seen God’s grace. Mila has a great team of therapists, audiologists and ENTs who we LOVE; we’re more like friends than doctors and patients. Living in Austin gives us a huge advantage when it comes to resources and Texas School for the Deaf, one of the best deaf schools in the country, is just 40 minutes from our house. For this reason, the deaf community in Austin is much larger than other metropolitan cities.
For right now this is where the story ends. We don’t know what to do next, but thankfully we have several months before we have to make a concrete decision.
Would you pray with us?
• Our number one goal is to do what’s best for Mila, but we don’t know what that is. We need prayer for wisdom, clarity and direction in our next steps.
• We have many more appointments and tests to run to rule out any potential syndromes or conditions that could be causing her deafness. Please pray for Mila’s health, that she’d stay healthy and thrive!
• We feel that God is stirring something up in our family. We aren’t given trials just to walk through them and learn nothing. It’s never for nothing. We long to know what it is He wants us to do with this season.
• Both of our families are beginning the process of learning American Sign Language. Please pray that we’d learn quickly and retain everything.
• There is a small chance that the hearing aids could work for her so we are going to do a 3 month trial to see what happens. Please pray during this time the nerves in her brain begin to process sound.
Thank you to our friends and family who’ve been walking this road with us. We are so so so grateful for your support and prayers.
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