Saturday, August 30, 2014

Chapter 23: Shouting I love you

During the busy months of Addie recovering from her heart failure and getting trained to get them home and then adjusting to life in our Gameroom Hospital, it was easy not to worry about their hearing loss.  In those days when Addie was so sick, I had prayed and promised that I would not mourn over hearing if she could survive that crisis.  I was determined to stay true to that promise and in some respects, I can say I did.  No tears were shed, no ruminating occurred, few moments of sadness invaded.  But the reason I was able to do that was only because I simply did not think about it.  When I started to think about it, I just blocked it out and focused on something else.  We did not tell anyone other than very close friends so I never had to explain it or talk about it or deal with it in any tangible way. I think months of denial or ignoring the diagnosis were necessary to keep me from feeling the despair that had seemed so strong initially, but they did little to help me truly reach a point of acceptance.  Once the babies were home and getting more settled, I knew the time to address their hearing loss was fast approaching.  They had a repeat hearing test scheduled for early October and the date sat on my calendar with a big red circle around it.  Yelling at me that my days of distraction and denial were coming to an end and I was going to have to think about, talk about and find a way to accept their hearing loss.

We were doing another hearing test in hope that the results would prove to be different.  The babies seemed to hear some sounds and react more to noise than we would expect if they truly were profoundly deaf so we just could not seem to accept those results.  The doctors offered us a small morsel of hope in telling us that some research suggests that the ABR brain wave hearing tests they had done are less accurate when they are done in an operating room.  The equipment and heavy anesthesia could have made their hearing seem even worse than it was.  Needless to say, this was the one thing they told me that we clung to most enthusiastically.  Therefore when I thought about that day approaching in October, I prayed and prayed that it would tell me my kids could hear something.  The doctors were very clear that we were not going to find out they had perfect hearing.  The best we should hope for is that they had only moderate loss and could still hear very loud sounds.  And so that is what I hoped for and prayed for, in those few moments when I actually allowed myself to think about it.

When the week had come and they were about to have their tests done, we were all anxious and I really felt like we needed people praying and supporting us.   By now, Facebook had become my source of support and the likes and comments from our friends reading along and following lifted me up on hard days and encouraged me on the good ones.  Sharing the details helped me feel less alone and I found comfort in letting people join us on this roller coaster we were living on.  But I had not shared about their hearing loss on Facebook or in any of the group emails we had sent.  I was initially too devastated and then far too busy trying not to think about it.   And then when the week came and I did want to share, I could not figure out the words.  How do I quickly say what we had learned, what was coming up, what we hoped for, how we felt and hurt and yet hoped.  I actually started to type in a few posts but never could figure out how to say it.  And I was never sure I wanted the 400 random people following me there to all read my deepest feelings sandwiched between a picture of food and a gripe about traffic.  Facebook just did not seem like the appropriate place to share something so big and so sensitive for me.  In the end, the solution I came up with was exactly what I needed both then and for the months ahead- I decided I would start a blog. I needed more space, more words, more structure if I was going to open up more and share my heart more.  And I wanted a way for people who were interested to be able to come and read but that was not thrown at people who happened to know me ten years ago and do not particularly care.  A blog that I could link to on Facebook seemed perfect. 

And so in September of 2011, I found my voice.  I started a blog with a simple introductory post and then within that week, I wrote one of the hardest things I had ever had to put words to.  I shared that we believed Max and Addie had lost their hearing from life saving medications and that it hurt my hurt to imagine them living in a silent world.  I asked people to pray that the upcoming test would show that they can hear.  And then I pushed publish and I felt an immediate release and weight falling off my shoulders.  Like now that I had told people, the pain didn't feel so personal and hidden.  And knowing that it was something I could tell people about made it not seem as terrible as it once had.   As the outpouring of love and support and assurances of prayer came flooding in, I knew that this blog was going to be a very important and special thing for me.  

The morning after I published that post, we headed downtown for the hearing test.  We were supposed to try and keep the babies awake and then drug them with Tylenol when we got there.  We totally failed of course and Addie fell asleep in the car.  She then woke up all alert when we got there and we had to give her the Tylenol and then wait over an hour while Al's dad patiently strolled her all up and down the hallways trying to get her back to sleep.  Once we got them in a nice deep sleep, they attached electrodes to their heads and put ear pieces into their ears.  They would deliver sounds to their ears and then wait and see if the auditory center of the brain would receive the message.  Even though they were asleep, their brains should still fire up if they could hear sounds at that volume or frequency.   Thankfully the audiologist doing the test was great and explained how it was all working and let me stay in the room and watch the screen and see the results in 'real time' if you will.  It definitely helped ease my anxiety and I was so glad not to be sitting in another room just waiting on answers I wasn't sure that I wanted.

By the time the doctors finished up and were ready to talk to us, I was already smiling.  Watching alongside, I knew they were hearing.  Not all the sounds of course but I saw their little brains firing to sounds and that was all I needed to be sitting there with a huge smile just barely able to pay attention to everything they were telling me.  When they told me the babies had moderate hearing loss in both ears, they probably had never seen someone react to that news with such elation.  I kept saying 'so they can hear!!!' to which the doctors with a lot of 'yes, but' statements.  Max and Addie could hear loud speech when there was little to no background noise, but a lot of normal conversation may be too quiet or jumbled for them to decipher.  They talked to me about hearing aids and all the hard work that would be ahead.  I did hear what they were saying but all I could focus on was that they can hear.  I looked right at the doctor and said 'yeah but if I say it really loud and in a nice quiet environment, you are telling me that my kids can hear me say 'I love you'.  The doctor couldn't help but smile at that point.  Yes, they could.  

We walked out of the hospital that afternoon with smiles shouting everything we could think of at our babies. And I went home and opened up my new blog and carefully described the speech banana and the scientific background behind what we learned.  But mainly I shared my joy and told everyone that there would be a lot of shouting 'I love you' at our house tonight.  I loved that because I had shared my fears and sadness over their loss, that I was now able to share my joy at what we had been given back!  

I think about it a lot now, about why we ever had to go through being told they were deaf on that awful surgery day.  There were moments when I felt like it was just unnecessary extra pain. Surely we would have been better off just knowing right away that it was moderate and not complete loss.  But, over time, I have reached a point where I am glad for how it happened.  Because if we had gone that day in October thinking they had perfect hearing and gotten the same news, we may have been crushed.  We may have walked out defeated and always viewed their moderate loss with sadness.  Instead, by thinking we had loss so much more, we saw it as gain.   I count every word my kids can hear as a gift, more than we had once thought they would have.  By being exposed to what could have been, we viewed a lesser loss instead as a gain.  And since dealing with their hearing loss has been such a difficult journey and experience for me, I think that is exactly how I needed it to happen.  I needed to reach a point where I appreciated a small amount of hearing.  I needed to mourn and cry and then be primed to rejoice as I saw those brainwaves firing.  I needed to know what they could have totally sacrificed so that there was genuine joy in my voice as I shouted I love you every night putting them to bed.

From the experience, I found gratitude in what is.  And I found a voice for myself in my blog.  I am not sure if I would have started it were it not for my struggle to explain their hearing loss.  And over the difficult months ahead, my blog was therapy for me and an important way to keep the world updated during unforeseen crises.

Moderate hearing loss has proven to be a much bigger deal that we thought as we skipped out of the doctor that day.  The doctor probably had some really great warnings and points in her 'yes but' comments that I ignored.  Sometimes it is even hard to think about that day and the simple happiness we felt at those brainwaves without feeling somewhat foolish, not understanding what challenges would still lie ahead.  But, even knowing all that we do know now, I am still grateful for the joy that day.   It was what we needed.  It was the hope that I craved and it was the appreciation and gratitude that I needed to have.  It has gotten harder in a lot of ways but one thing remains the same.  We still end every day shouting I love you.  

1 comment:

Anonymous said...

Steph, try not to underestimate the significance and meaning of sharing your story! Even for those who might be random friends from 10 years ago. Just as sharing something so incredibly difficult and challenging that you have been through is a release for you, so it is an inspiration and a challenge to others who are going through something - anything - to face their own challenges bravely and as sure-footedly as possible, as you have done. Keep it up!