The 'Process'

My cousin has a friend who has a new baby that has been diagnosed with profound hearing loss. She told me about it a get-together we were at last night and I couldn't stop thinking about this family; I felt a really strong need to reach out to them so I called, got their number and called them. I had a wonderful conversation with the dad and I look forward to talking with the mother soon. Connecting with another parent who has been there, done that, and got the t-shirt helps so much when you are facing issues with your child. Talking to someone else who 'just gets it' without having to explain all the acronyms and the reason for all the tests and why they look for all the seeming unrelated things that might actually be related to hearing loss... yeah, it helps

After talking with this totally awesome dad (hey, he was at home on a Saturday afternoon by himself with the kids in the middle of changing a poopy diaper when I called! That's pretty awesome in my book! LOL!), it caused me to reflect on our own journey and how I got to where I am in relation to the girls' hearing loss. I realized that I had blogged mostly about the process but not about the 'process'. What I mean is, I have talked about the appointments and tests and medical stuff - the physical process we have been going through - but I haven't really talked with anyone about the emotional process you take as a parent with a child diagnosed with hearing loss.

I think I'm doing okay on the outside, at least I hope I do, I feel like I hold it together pretty good for the most part but that doesn't mean there hasn't been bad days; days when I want to stomp my feet and shake my fist and say "Why me? Why my children? Why US!?!?" So just a glimpse into some of the millions of things floating around in the mind and heart of a mom with two children with hearing loss:

Sheer terror - At the initial diagnosis, hearing the words "your child has severe hearing loss" really initiates almost a fight-or-flight response. You don't know what to do, you don't hear most of the words the professional tells you after that, you certainly don't know what questions to ask, and since neither the fight or flight response is acceptable in a medical office from modern human beings, your brains does the next best thing and just goes into a kind of shut-down surreal sense of other-world-ness. It's my opinion that this is your body's way of removing you from a situation that you haven't figured out how to handle yet since you, as a modern human being, have sufficiently suppressed the urge to kick the audiologist in the shins or run screaming from the office.

Depression - I go into kind of a survival mode when I am overwhelmed and depressed, doing the bare minimum to keep the family and household going. I am told that individuals and parents with children of hearing loss go through a grieving process and it is normal to feel all the same emotions as a person who has lost a loved one. It makes sense because loosing something as important as a basic sensory function is a pretty big loss!

Guilt - Why didn't I catch it sooner? I thought something was wrong earlier, why didn't I push for a more thorough hearing evaluation then? I mean I live with hearing loss, I should have known!!

Frustration - Why won't anyone listen to me? I knew something was wrong! Why didn't the doctor say "unreliable" on that first screen instead of "Oh, she just lost interest". I mean I LIVE with hearing loss, I KNOW what I am talking about!!

Guilt(Part 2) - As the parent, is there something I did? Could I have prevented it? Was it something I took/didn't take, ate/didn't eat, breathed, whatever, while I was pregnant? Was it my genes? This is true for me especially since I have hearing loss myself, I feel especially responsible for the girls' loss.


Frustration (Part 2) - Why can't I get an appointment sooner? Why can't I get straight answers from insurance? Why won't insurance do what they say they are going to do? Why does it take so long to get test results? Why can't someone tell my why this happened and what to expect? And where to we go from here?

Relief - It's only hearing loss, it could be so much worse. There are so many parents facing much worse circumstances.

Guilt (Part 3) - Why am I so bent out of shape; it's 'only' hearing loss? It could be so much worse! I should be thankful.

Vanity - Will people still think I have a beautiful baby when she gets her hearing aids? Will they see her gorgeous blue eyes or will they only see the aids on the side of her head? Will people make assumptions about her that aren't true? Will they see past their aids and see what wonderful, beautiful children they are?

Fear - Will they be okay? Will they learn to talk 'normal'? Will kids make fun of them for being different? Will they have a problem with school? What do we do when we go to the pool?

Now I know there is a while lot more, this list just touches the tip of the iceberg. A big one that I left off was "denial". I honestly didn't spend a lot of time with this emotion, I really think I knew in my heart long enough before I could get anyone else to take it seriously that denial was pretty much beyond my capability. My husband, on the other hand, lived here for quite a while. I think that is somewhat normal for dad's though. It seems that mom's have that sense, they know something isn't right, and when their fears are confirmed, they go into hyper-mothering mode and want to comfort, research, prepare, and reach out and connect with other mom's facing the same thing. Dad's just want everything to be right. Dad's fix things and if it isn't fixable by Dad then they don't know what to do with it, so they deny anything is broken. (I'm not saying kids with hearing loss are broken.)

So, I realize this post has focus a lot on the negatives. There has been a lot of surprisingly positive moments on this journey as well. Happy, joyful times that are so hard to explain to someone outside of the world of hearing loss; the look of joy on Faith's face when she really heard for the first time, hearing a string of consonant babbles for the first time, finding out insurance would pay for much more than we thought! But my intent was to be real, and I think a lot of times people only put out the 'sunshine and roses'. I think it is okay to go through some negative emotions as long as I don't get too hung up on them and stay there. Recognize them, deal with them, then I gotta pull up my big girl panties and get on with life! My family needs me. My kids need me. They need to hear me tell them that they are fearfully and wonderfully made by a Creator that doesn't make mistakes. He has a plan bigger than ours and he knows the opportunities that lay ahead for my children, hearing or not. All we can do is trust in that.