Tuesday, September 16, 2014

And Now We Wait...

And now we wait. This time around seems a little bit different then the others; not sure how or why, it just does. Maybe because we know what to expect; we know the ins and outs of the hospital: the nurse will come around every hour and the doctor will be out when Riley is in recovery. Maybe it's because we already have hope. Riley already has one implant working well and progressing as expected.

Maybe it's because we are anxious; i have been waiting for this day since last December and want to move on with our lives. I want her to be able to hear with both ears, not worry about infection and  be her own kind of normal. People ask me how I am. They want to know how I am feeling. I'm feeling calm.

I don't know how to explain it really. Josh and I have two beautiful daughters and are in a great place in our lives. Emerson is 5 months old today and our Riley Mae is in surgery on her way to hearing all the beautiful things in this world- with both ears.

When we got to the hospital this morning, yes at 5:20am, Riley just held on tight. I doubt she can really recall the past surgeries but she definitely knew something was up. She sat there, they took her vitals. She sat there, they went over all her history. When it was time for her to go, she just wanted to get into the Step 2 car and go. Mommy didn't want her to.

So now we wait. Josh sleeps, and I blog. We wait until the nurse comes around again to give us an update. We wait with other families. There a family next to us who's son is having open heart surgery. there are about 30 family member, pop, chips and all kind of snacks. families pulling together when it matters the most; reminds me of Riley's first surgery June 18th 2013.

I may be calm because she is so strong. She's not even two yet and already she is teaching me more than I have taught her. I learn patience from her, I learn to wait. teaching her to learn to listen makes me learn to listen also. She knows what she wants and is not afraid to go for it. I already know this about her at such a young age. She isn't shy. She laughs and tries to do exactly what you do, she loves to imitate (hopefully that is gone by the time she's in high school).

Nurse just came by and told us she's doing great! "Such a strong little girl". It should only be an hour out before she's in recovery. 

I really believe everything happens for a reason, its so cliche I know. Riley was given to us for a reason. We moved to Indiana for a reason and had the opportunity to be part of the the Riley Hospital at IU Health family…for a reason. This place has been awesome to us. It's 2 hours each way from our house but there is no distance I wouldn't drive to give our daughter the best care. Riley Hospital is that. This morning they gave Riley a little doctor set so she could play doctor when they were doing her vitals. Everything they do is for the childs experience; their comfort level.  I hope our journey continues with their support in audiology and speech therapy.

I know she won't remember this experience, but I will. I will always be grateful for the opportunities that she will have because of Riley Hospital and Dr. Yates and his team. Every time I see him it's bitter sweet; we love seeing him, but we wish it was under different circumstances.

I go back to when I first found out Riley was deaf and we were researching hospitals and doctors. We looking at Columbus Children's Hospital and Chicago Children's Hospital. Both have great cochlear implant departments and have great reputation; however when I met Dr. Yates, I knew this was the surgeon that I wanted working on Riley. He's a perfectionist, he cares and the amount of research he does on cochlear implant implantation, activation, and oral speech communication floors me. He works non stop, goes off the Washington DC to meet with other research developers for the cochlear implant. He has three daughters himself; he's a family man. And most of all, the first time she had her surgery, he came out after 9 hours of surgery and said "thank you for letting me take care of your daughter". No thank you Dr. Yates.

Monday, September 8, 2014

In My Daughter's Eyes

In my daughters eyes, I can do no wrong. She looks at me with admiration, with no fear, with the sense that her mommy is the best mommy around. When in reality I struggle. I fear. I don't know what the future holds and that can be scary. But in her eyes everything is perfect.

703 days ago I gave birth to a daughter who was deaf. I think in reality it took me over 1 year to actually say the word deaf instead of hearing loss, or nothing at all. I remember the pain I went through the first 6 months thinking about her future and what opportunities I can give her. Doesn't every parent want this?

In my daughters eyes I know everything. She can come to me and I can fix everything. If she's crying, I know how to calm her. If she's excited, I know why. Lately it's been hard. I read other CI (cochlear implant) parent blogs and they assure me that one day your life begins to feel normal again.. When is that exactly? I still feel unbelievable sadness because I still wait for her to have  a revelation and use spoken language to talk to us. Tell us what she wants; but she doesn't know how. Parenting to me involves therapy, learning to listen sounds, Ling 6, auditory sandwich, conditioned play and everything else that will help with her spoken language. Every book I read, gift I give her, or sound she makes has something to do with her development.

In my daughter's eye she is not different. She doesn't know what the world is like; How people judge and make assumptions based on appearance, monetary things and your successes in life. She doesn't know that she is special. I try to give her every opportunity she can and let her just be a child, but I can't. She is different and the harder I work now, the better her life will be later. Riley doesn't know that everyone doesn't have a CI. Every child she meets she's going to have to explain that she has a CI and that's how she hears. It's my job to teach her to be her own advocate and be proud of who she is.

In my daughter's eyes I am her main teacher. Through her eyes I give more when I want to give up. I break down sometimes and need a break. I shut my door and sit down and take deep breaths. I yell and get frustrated at the progress but yet amazed by her perseverance. I get back up, look at her, and in her eyes realize that she sees no wrong. I realize that we are the main piece in her success. That's not about having a deaf child; its about being a parent.

Through my daughters eyes I am her hero. The steps I take, she will follow. The heartbreak I go through, she will also feel. This makes me put one foot in front of the other and be the best parent I know how to be with the situation we have. In reality, looking through her eyes brings a little bit of me back everyday. I couldn't imagine not being Riley's mommy.

Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed.” ~Linda Wooten