There are days of triumph. We have lots of those lately. Days when Anna uses her signs to express complex thoughts. Days when Anna turns to our voices and responds using hers. Days when Anna uses speaks new words or responds in sign appropriately to something that was spoken. Days when I share Anna's story with the public, and I am awed and inspired by how far we've come.
One year into life with an auditory brainstem implant, and Anna is moving through the stages of spoken language acquisition as expected - perhaps even faster than expected. Anna's teacher reports that Anna has made huge gains in the course of a single year. Anna regularly says "Mom" to get my attention - a sweet sound even when she says it 53 times in a setting (which she does). She uses a good approximation of spoken sounds to say the alphabet (she has been signing the alphabet for a long time) and count to five (again, she has been able to count in sign for a long time, and she can count higher, but I'm reporting on spoken language here). She has said several first words -- ball, bath, boat, mine, more, fine, fish, and even a pretty good approximation of bicycle and "Happy Birthday." We feel good about what we're seeing.
And then there are the other days.
Days when I am frustrated because I feel that I can't communicate effectively with my child using either spoken language or sign. Days when it seems Anna's gains in learning to use listening and spoken language are painstakingly slow. Days when it seems my progress in mastering sign language is even slower. Days when I am around people who sign and I make some gaffe - a wrong answer because I didn't understand the question or a wrong sign because I thought I knew it, but I didn't.
On the hard days, my heart feels a burden for Anna because I am keenly aware of the disparity between her and the other kids. A disparity that exists not because they are treasured more or because they can hear. But a disparity between what they know and understand and can express. These feelings drop me fallen before the Lord, where I wonder, "Lord, what were You thinking? When you thought this family would be good for Anna, did You see this moment? Do You see my failings?" And I hang my head in shame. I want to cry, but crying is futile.
And so I try harder. I try to learn more signs. I try to use them more effectively. I try to practice more the recommended listening activities from school and from therapy. I try and try and try. I pray and pray and pray. I love when Joyce Meyer, that wonderful preacher, says that sometimes the most spiritual thing you can pray is, "HELP!" I've got that covered because I probably pray that more than anything else. I love that in our local Deaf community, the sign for "help" is also the sign for "Amen" at the end of a prayer.
I realize that as I share on this blog, it's sometimes rainbows and sunshine. Part of that is because we DO have hope and faith and trust in the LORD. He made the rainbows and the sunshine, and we choose words of life every day. We know He absolutely does NOT make mistakes. Anna's deafness is not a mistake. Her place in our family is not a mistake.
A hard journey is not a bad journey. A refining fire clarifies but does not consume. He gives beauty for ashes and lifts the needy from the pit. I've no reason to despair. But it would not be genuine or truthful to make it seem that there are never hard days or hard moments.
We have some of those hard moments lately. One of our biggest frustrations has been related to Anna's follow-up care/mapping. When we took Anna to Italy for her implant, we were told that she could receive her follow-up care in the USA. In the past several months, through an unforeseen turn of events, the clinic that held Anna's FDA approval had a financial crisis. The people with the expertise in ABI mapping left and went to another place, so Anna's compassionate use exemption had to be transferred. We thought that would be easy. It has turned out to be quite an ordeal. We were first informed of the change in October 2013, but it did not seem like such a big deal then because Anna wasn't due for remapping until November or December. We kept hearing it would happen "soon."
By the end of December/early January, we knew Anna needed new mapping. However, the new clinic did not have approval yet. We kept waiting. In February, I called the FDA myself, only to learn that the paperwork had not been submitted yet. "Soon" we were told again, maybe by the end of February, we were told. In the meantime, Anna has now been without followup care going on eight months during her first year of hearing, when regular mapping is so important.
So....I reached out to other ABI families and started researching other options. One clinic with extensive experience in mapping and very pleased parents emerged as a viable option. I emailed back and forth with them, and I was impressed by their breadth of knowledge and willingness to share it with me. They offered Anna a firm date during the first week in May. While I remained hopeful that the US clinic would come through, it became clear this week that, at least for Anna's one year appointment (for which we are now past due), we should go to Manchester, England.
Passports? Check! Photo op with the Queen? Possibly not.
Believe me, traveling the world for medical care/intervention is NOT my plan! I don't even like to drive across town for medical care. However, it makes absolutely no sense whatsoever to fly Anna to Italy, submit her to brain surgery, get a state of the art medical device, watch her make amazing progress, and then not keep the ideal follow-up schedule. Why would we do that? No, no, no.
We are very fortunate that a dear friend donated her airline miles to me, and combined with my own, we were able to score some inexpensive tickets to England. My hotel reward points are covering some of our hotel stays. And a BIG garage sale will (hopefully) fund at least part of the medical appointment.
Here's the thing...everytime a new need presents itself, I begin to worry. How can regular, everyday, humble people afford this kind of thing? Then I begin to think maybe we shouldn't do it. And then I feel guilty because when should we ever make healthcare decisions for our children, not based on what would be best, but based on what is cheap?
That's when I have to give myself a little talk. It goes something like this,
"Look at the birds of the air: they don't plant or harvest or gather into barns, and yet your heavenly Father feeds them. Is Anna not of more value than they are? Look at the lilies. They don't work and spend money on fine clothes. But Solomon in his splendor was not dressed as beautifully as they are. So you just focus on the LORD. Seek first His kingdom and His righteousness, and He will supply your needs." That's the Amy Paraphrased Version. Money can seem like a paralyzing hurdle, but it's no problem for God. He asks us to trust Him and do what is right. We believe this is right for Anna, at least for now, and so we keep moving forward and placing our faith in the One who created Anna.
So, friends, stay tuned....we're about to become world travelers, yes, again!
Amy
