So many of you know Eva has bilateral Microtia/Atresia. We have been working with insurance to get her a hearing device from Oticon that essentially will give her normal hearing. This device picks up sound and transfers it into vibrations while laying tight against the skull. It is transferred through her skull and received by her inner ear. In normal hearing sound waves are captured by the outer ear and sent down the ear canal to the ear drum which in turn vibrates the small bones in the ear. Then it is sent on to be interpreted or "heard". That's the quick version :) Insurance companies are trying to classify this bone conducting device as a hearing aide. Hearing aides only amplify sound, they do not alter it. So basically we are trying to prove this to the insurance company and get these devices covered. They are very expensive to buy. This honestly should not be an issue as hearing aides should be covered as well (but that is another story).Since Eva came home we have been going back and forth with insurance. We are also without an ENT and Audiologist. Which is also another story. We are moving and kinda stuck in limbo until we get in with the new doctors. So during this time we went looking and found someone who wanted to sell us a use bp100 from Cochlear. Although this is not the device we want forever it does the same thing and would give her sound. We had to fight to get a softband (headband the BAHA ataches to to keep it next to her skull)for her as we cannot order direct from the company ourselves (the straw that broke the camels back with the audi), our audiologist wanted to mark the price up over three times the original cost. We found another audiologist willing to order one, paid to has it shipped quickly and waited. She received her baha in the mail first and it was in great condition, we were so excite to see her face light up when we used a tester that came with it. We waited on the band a few more days. When we got it and she could wear it, it was amazing the change that took place. She started to babble and talk and respond to her name right away. She would jump at loud sounds and turn in their direction. All amazing stuff! We had a few precious days of sound and then her baha, that didn't come with a tether (I didn't even know about them) disappeared. We narrowed it down to a trip to the airport to pick up our oldest daughter 2 hours away. She had it in the airport but not when we stopped to eat after. We started calling and calling and (praying) our niece even went to go look for it personally but it was no where to be found. I was sick. Not only about the several hundred dollars we had just lost, but now our precious girl had to struggle to hear again. I cannot explain the sadness you feel when something so precious is taken from you child. You know the impact it will have on her speech and the delays it will cause. There was still no end insight to the fight with insurance.
We have since been working with her, she has been getting speech therapy and trying to talk. She is progressing but very slowly. She can say all our names but I am not sure an outsider would understand her. We are not giving up, she will have her own hearing devices some how. So yesterday a fellow adoptive momma (Jamie), with a beautiful little girl from China (Katie) who shares Eva's special need, posted about her loaned baha dying, I could relate. She came home shortly after Eva and received her baha pretty quickly. It was a loaner from another mother and had been used by many children to bridge the gap until they could get their own. It was worn out and now finished. As you can imagine her mother was very upset, I commented on her message to encourage her and let her know I understood. We had a brief conversation and she was asked to private message someone else. I figured this meant Katie would be getting another loaner. I was so happy for her but so sad at the same time. My heart ached because I wanted that for Eva, I said a prayer to real my emotions in, chastised myself for being selfish because I knew Katie needed this as much if not more than Eva. I locked up those emotions and was about to get off facebook when Jamie messaged me. She said she may have a device for Eva. She said she received two offers, the first offer she refused, then the second offer came and she accepted. She told me she asked the owner of the first device if she would send it to Eva. I was confused, and asked her why she refused it. What she told me ripped open the place I had just been sealing off, emotions to hard to deal with, so you push them away. Now they were overflowing into a puddle of tears. This momma, who's baby needed this device so badly, didn't really refuse the offer, she asked for it to be given to Eva. She felt Eva needed it more because Katie had been blessed with months of sound. Let that sink in. Can you see how beautiful that is? How loving and kind? Then add on top the kindness of two other woman willing to give up a backup to let to little girls hear again. I can imagine as Jamie with an aching heart for her daughter, was giving away a device to mine, God was smiling. Knowing He was providing for both of these girls. Jamie got an email moments later offering Katie another device and she gladly accepted.
I am in awe of God. I know he does this stuff all the time, but when you get to be dead center, it is breathtaking. He is so beautiful. He loves us so much. I lose sight of that so many times. This broken little girl inside me gets lost in the sea of lies the enemy is always whispering to me. Telling me how God doesn't really care, that I am not worth enough to Him to have Him demonstrate His love for me. I keep all of that hidden, tucked away inside. Then God does something, many times
through one of His kids, that shows selflessness and kindness that could only come from Him. I want to bottle up those moments and be able to open them when I get lost. When the stress and shame of things I cannot fix or repay overwhelm me. When I feel like I am failing God because I cannot seem to figure out how to keep it all together. When I feel like a horrible parent because I cannot find the solutions, or provide what they need medically. When I get so frustrated and cannot understand why things seem to always be so hard. When I am begging God for answers and He seems silent. Those are the moments when I need the be able to open the bottle and pour our these feelings. To let the videos capturing His beautiful love for me play before me. Sigh. So for today I am going to rest in His love, because today it is clear to me.
Thank you Jamie, you gave u something more than a hearing device. I know you know how priceless that is. You also let God use you to give us light when things felt really dark. Thank you to the ladies who so kindly gave our girls the gift of sound, you also know how precious this is. We will keep fighting our insurance to get our girls their own devices and make sure that these you have entrusted us with will be a blessing to another child who needs them. Thank you to everyone that prayed and those that helped in anyway.
Thank You Father for your love. Thank you for kindred hearts to share this journey with. Thank you for these precious babies and the honor of watching them grow up. Help us to live everyday in a way that honors and reflects your love to them and others.
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