Emilie Ruth's Busy Life: November 2011

Before reading on, I ask that you respect my feelings and decisions. I have friends who are a part of the Deaf community, I have friends who are not a part of the Deaf community. I am aware of the politics, and feelings people have about children with a hearing loss, etc. I debated a long time before deciding to post this, and feel that I need to as this also serves as a journal for me. I will reserve the right to delete any demeaning and disrespectful comments. I love all of my friends, and hope they can show the same love and respect for me as well.

Patrick had his first BAER testing this month. Fortunately my parents were here for this so I didn't have to go alone. It wasn't until the afternoon, so we spent the morning at the National Zoo so we could wear KB out, and hopefully keep PK busy enough to not focus on being tired and hungry.
When it was time for the appointment, my dad took KB home to get lunch and watch tv (he refused to take a nap), while my mom went with me to make PK stay awake in the car seat. That was not fun. My friend Jenny can attest to this as she helped me do this at a later date. My mom was flicking ice cold water into his face, dripping it into his hands, rubbing it on his feet, etc. just to keep him awake. Boy was that baby mad.

We got there, and the audiologist introduced herself. We first went in and tested his ear drums. He had fluid in his ears. This does affect the test, however the audiologist still wanted to proceed. She explained the process, then left the room to allow me to nurse Patrick to sleep. The whole point of keeping him awake and tired before the test is so that he'll be so tired during the test, he won't wake up. He did BEAUTIFULLY, meaning he stayed asleep for so long she was able to do every single thing they needed. It took just over an hour to do it all. She did air conduction, tone bursts, and bone conduction. As I was watching the computer screen and her face throughout the whole thing, I just knew. I knew our son definitely had a hearing loss. I had seen enough BAER test results through my job to know that he wasn't showing any peaks in the readouts (brain activity picking up sound).

I flashed back to a time when I once told my friend Jenny that I was afraid of having a hearing child (KB), because I didn't grow up hearing and feared I wouldn't be able to relate to him as well. Here I am now, with a child that more than likely has a hearing loss, and I'm scared out of my mind. Why? heaven knows, I'm deaf myself! Yet I knew why. I was scared for him to go through all the different trials, etc. that I had to go through. I guess just being a parent is scary, period, no matter how your child comes out.

After that long hour was over, she confirmed that Patrick definitely had some kind of hearing loss. However, the degree was unconfirmed due to the fluid in his ears. He showed NO responses to anything....None. Even the bone conduction, which proves he definitely has a sensorineural hearing loss to a certain degree. The bone conduction test can only test so loud, hence why the degree of the hearing loss was still a question. At best, he had a moderate hearing loss.

I put on my brave face, and everything echoed in my head that everyone else has been saying "At least I'm deaf. At least I understand. At least I'm prepared with the background knoweldge. At least I do this for a job. At least I have experience with both hearing aids and cochlear implants. At least I have family members who are deaf. At least I already know a visual communication system. At least, at least, at least."

We got home, life went on. My parents left a day later to go visit my other siblings.

I was very surprised at my own reaction to all of this. I thought I would take it in stride. I always knew there was a chance one of my kids would have a hearing loss. However, I still wasn't prepared for it actually happening. I was angry. I blamed myself. After all, it is my genes that made him deaf. It *IS* my fault. I suddenly found myself envying the parents that didn't know why their child was deaf, or knew why but it wasn't due to genes or anything the mother did. At least it wasn't their fault. I cried, a lot. I had a VERY difficult time going back to work hearing all the "at least you know what it's like, at least you have experience" things all over again. It took a lot in me to not just say "I don't care, it's still my fault and I don't deserve to be his mother."

Like I said, I was surprised at my reaction. My parents were surprised. My husband was surprised. My close friends were surprised. It really just hit me harder than anyone thought it would. My husband was more at peace with it than I was, and he's hearing!

It wasn't until something happened at work where I met a new family on my caseload that made me step back and take a new perspective that I was able to get out of my "blame me, I'm an awful mother" stage. Obviously I cannot really give details, but in short, this mother had so many other trials going on compared to me,t hat I just had no right to be acting they way I was. I was being selfish. I have since come to peace with what has gone on since then.

I still fear for Patrick's trials as he grows up. I also fear for Kiernan's trials too as a sibling of a deaf child. However, at least I DO know what having a hearing loss is like. At least I DO know the different communication modality options out there. At least I DO know the amplification choices out there. At least I DO know child development, and what is supposed to happen in Patrick's development. All of those people were right. At least I DO know. How hard must this be for parents who have never had anything to do with deafness or hard of hearing, especially with young children? That's exactly what my role is in my job, to guide those parents to making the decisions that are right for their family.

This experience has given me a whole new perspective on how I will do my job. I respect and appreciate what new parents have to go through a lot more now. I understand the grieving parents do more now. I understand the grieving some parents don't do, and admire them for that. Already, Patrick has given me another blessing in my life and that is to help broaden my understanding of being a parent as I try to relate with and support the parents I work with. Kiernan has done this too, in his own way.

Both of my boys have changed my life for the better, already. I love them. I also love my husband for helping me understand what I was feeling, and supporting me.

I am ever grateful for my family, and wouldn't change a thing.

In November I was fortunate to have more family come out to visit us.

My parents were able to make a side trip to DC during a business trip in Chicago (how they made that work, I don't know, and don't care). My brother Michael and his wife came down from Philly to visit as well. So we scheduled the baby blessing to be during that time as my parents were not able to be there for the birth. Below are the pictures from the baby blessing:

Patrick in his baby blessing outfit: