Sunday, May 6, 2012

Processing the Diagnosis

Thursday night I kept SJ awake as long as I could so that she could maybe, just maybe, sleep through her screening at 8:00 the next morning. 30 minutes before we went in I gave her some children's Benadryl. I think it's important to mention that my sister in law is an experienced pediatric medical professional and  instructed me on the exact dosage for SJ's weight along with how long it would take affect. I am in no way suggesting anyone should use any kind of over the counter drug as a sedative without a doctor's supervision.

We arrived at the hospital early. The office wasn't even open yet. We aren't punctual people by any stretch of the imagination, so the fact that we were 30 minutes early is a little hint to just how anxious we were to get this testing done. When we met with the doctor she looked like she was younger than me (and I'm 29). J and I were a little caught off guard by the fresh face that must have just graduated from college.  I guess that was just another lesson in not judging a book by it's cover, because we couldn't have asked for a more qualified, caring, or personable audiologist. Casey was a God send. She allowed us to cut the lights to keep SJ asleep. Every now and then when SJ seemed restless, she encouraged us to take our time and do whatever we needed to do to comfort her. Seeing my baby girl curled up in her floral thermal pj's just as cozy as ever made me wonder how someone so peaceful could possibly belong to me. I was a sleep deprived nervous wreck and I can't even tell you whether or not I breathed for the 2 hours that we waited for the results.

The ABR began with doing an alcohol rub and exfoliating her face where the sensors would be attached. The test was so sensitive than any little bit of dead skin could have interfered with the results. For a while I just stood over her, covering her in prayer and worshiping silently.There were a couple times that we had to stop the test to readjust the clips that were attached all over her ears and forehead, but most of the time the screening  was uneventful. So uneventful in fact that at one point J was snoring. I wish I could fall asleep, or fast forward, or anything just to know how all of this would end.

After about an hour of sitting in silence I pretty much knew that today we were going to find out something. SJ had done a fantastic job cooperating. Part of me had wished that she were still in diapers or taking a pacifier, because I was worried that she would cry or need to go to the bathroom, but it's been months since she had a diaper or pacifier. In the end I guess it was just a reminder for me as a mom to know that despite whatever I was about to find out I still need to let her grow up. She is going to get through this because she is strong and capable, not because I baby her and protect her for the rest of her life. (By the way this has nothing to do with potty training or pacifiers, just a personal realization for me in this moment).

Eventually the lights came back on, the Doctor commended her for how well she did, then sat down to tell us the thing that, deep down, we already knew. SJ has severe hearing loss. She said the right ear is a little better than the left but not by much. Dr. Casey was thorough while allowing for questions between all of the details. After all was said and done Dr. Casey looked at my tear filled eyes and said something to the effect of, 'I know that this is difficult. It is a lot to take in and I don't have children of my own', and she placed her hand on her heart and continued sincerely, 'but I can only imagine how you must feel. The thing I want you to know though is that she is going to be fine. She will succeed. This will NOT set her back. A few years from now you will be able to have a conversation with her and she will be communicating like her siblings.'

I plan on elaborating on all of the technical details very soon, but in short, she is going to have 2 hearing aids that will allow her to hear voices and process language. I think we are all handling it pretty well considering we've had a month to prepare. I was originally so upset about having to wait so long for the test, but now I see that it is what I needed just to ease into this whole idea. I explain it like someone handing me a football. The first time I was told my child had hearing loss I was in denial. It was like I was handed a football and just thought Um, what is this? and gradually I became accustomed to the idea until I was ready to get in the game. If one month ago they told me the conclusive results of SJ's hearing that I know now, it would have been as though a NFL player chucked a ball at my face. It would have knocked me off my feet. I would have been overwhelmed and unprepared. There are still a lot of unknowns and I am sure some days will be easier than others, but we are handling all of it one step at a time. Kind of like this video of SJ's first steps.

video

It's a little wobbly, at one point she looses her footing, but she gets back up and keeps trying. Of course these days we can't keep up with her because she's running, climbing, and doing acrobatic stunts all over the place. The song I put this video to says "We'll learn together, you and I" and that pretty much sums it up. This is new for all of us. We don't know of any family, immediate or extended, that are deaf or hard of hearing, but we are all going to learn how to do this together.


I will end with the words I wrote to SJ on her 2nd birthday not that long ago;

 I hope and pray that you always break the mold. It would be a shame to stifle the unique, creative individual that God created you to be. The sky is the limits as far as what you can become. Don't let the world distract you from that. Stay beautiful. Stay true. Keep being you.

3 comments:

Marlene Magee said...

I will keep you guys in my prayers

{amy} said...

I love how God works things like that ~ how He allowed you the time of preparation for the news to come. Will continue to pray as you learn and adjust to this new part of life.

TracyL26 said...

And reading that made me cry :). You are an amazing mom with an amazing family. I have never met your children but I know this much for sure, they are fighters! Stronger than any kids I know. Zion has over come so much with his eye issues and SJ will do the same, overcome and excel :). There is a reason for all of this and God will carry you through, your faith in Him is incredible to see as you write about everything. You will be able to help so many other parents who go through this with your testimony. Tons of love and prayers!!!!