Reflecting 2012. Happy New Year!!

As this year comes to an end and 2013 takes off, it's always a good time to reflect on the things this year has brought you and what exciting new things 2013 will have. I don't think anyone can really predict what is going to come in this next year...life sometimes make those decisions for you. Yea you can set new year's resolutions and goals for the year but sometime God has other plans.

I would have to say that 2012 was the best year of my life so far. 2011 was a hard year of infertility and a year of change with moving to Indiana. Looking back now I can't believe what a year has done. I feel like a whole different person, a whole different family.


This time last year we were still renting in North Manchester and I wasn't pregnant with Riley yet. Now we own a beautiful house in Wabash county and have our amazing daughter Riley Mae that is almost 3 months now.

2012 has brought us great joy and also some challenges. Pregnancy was not an easy thing for me. I had quite a few complications in the beginning and pretty much worried myself sick for 9 months. I would say pregnancy is not my best friend. Did I love feeling her kick everyday? Yes. Was a nervous wreck the whole time? Yes. Would I do it again? In a heartbeat.

We also found out our daughter was born profoundly deaf in one ear and severe in the other ear. In all my life and all my challenges I think this was the hardest to wrap my hands around. It was a greiving process and family and friends pulled me through. Our baby is perfect and I actually think this "challenge" is going to make me a better mom.

I also lost my grandma in May 2012. This was hard. I love and miss her so. There isn't a day that goes by that I don't think of her and wish she could meet Riley Mae. Mae is part of Riley named after my grandma Sandra Mae and will always be a part of our family.

After all things good and bad I will have to say Life IS Good! We get through. You pick your head up and keep on moving because this is what matters. The picture below is what life is about and when I think of 2012 this picture will come in my head....and make me smile.




2013 is going to be a great year with more surprises I'm sure. This time next year Riley will have her Cochlear Implants and be able to hear all the great things that life has to offer. I will look back on this post and remember how far we have come and what great things have happened to our little family.

Happy New Year to all.

Riley's Mama

xoxoxoxoxoxox

The Beauty of Holland

I have been either glued to the phone or the internet looking up and researching articles, videos and blogs about Riley's hearing, cochlear implants and everything in between. I love to blog and love to read other blogs. I came across quite a few blogs families that have documented their cochlear implant journey and I will have to say it has been so uplifting.

Many of them had this story on their blog, describing raising a child with a disability (which is still hard for me to grasp) and it really got me thinking. This story was written by Emily Pearl Kingsley, a Sesame Street writer whose child was born a disability....read on.....

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland??" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a while new group of people that you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss
But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

The first time I read this I cried...and cried. I have mixed emotions about this story because even though Josh and I are in Holland..NOW I know we can still go to Italy.

2 Months Young

My Sweet Riley Mae,

I can  not believe it has been two month (that's plural now) that you have been in our lives. On one hand I feel like time is flying by and can not believe it's been two month. Then again I don't remember my life without you. I can't imagine it without you and I feel like you have always been there.

You are growing up before your eyes. You had your shots yesterday and that was a tramatic experience but you bounced back. You are so strong, cried for about 10 seconds and once you saw me you were over it. That makes my heart smile. You know who your momma and papa are and love being around us.

You are now 9 pounds and 20 inches. That means 10% on the growth chart for weight and not yet for height. That is totally find though because as you get older, you will be able to find  pants that are long enough for you! Your mama has long legs and it has always been a problem.

You are now discovering the world. You love looking around at everything. You love lights, ceiling fans, colors, outside, pretty much everything around you. You grab for things and you are slowing discovering your hands and how you can get them into your mouth. You love bath time. We put you in your little tub and its like you are in heaven.

I look forward to every second I have with you. You make coming home every night from work amazing. I rush home to hold and play with you everyday. You make the weekends extra special and our time as a little family so precious. I promise each day that I will work hard and be there for you every step of your life. I look forward to you discovering more of the world through hearing and the journey that we are going to embrace. You have truly brought so much joy to each and every day to our family's life.

Happy 2 months baby,

Love you,

Mamma

Let there be LIGHT!

To say that the past week has been crazy is an understatement. It was my first week back to work and it was like READY. SET. GO! No turning back. I feel like the phone has been glued to my head and I am trying to figure out how to work full time, be a mamma and go to ever appointment for Riley and make sure I do everything in a timely manner (meaning FAST).

This week we had her evalation for First Steps. First Steps is the "early intervention" program through the state of Indiana. They will provide us with resources and hairing aids until she is 3 years old. Then she is into the school system (scary). This appointment is a whole post on its own. I think I had my first panic attack.

Yesterday we went to Fort Wayne to the Ophthalmology clinic to rule out any retinal abnormalities. This is important and usually first in the process because hearing loss and vision impairment can go hand and hand. This can rule out Usher's symdrome as of today. Usher's syndrome can develop over time, however the doctor seemed confident that this is not the case for Riley. PHEWWWW. I am so happy that her eye sight can back normal. They were able to dialate her eyes to tell her eye prescription and look at her retina. She is far sighted, which most babies are at her age, and her retina is perfect! You don't know how much of a relief that is. I have been driving myself crazy wondering if she can see, if her eye sight is developing. Such a relief.

Next step...hearing aids. She was fitted for hearing aids about 3 weeks ago but since this process has been taking so long I would like to get her fitted again. Her little ears grow at a fast rate and it is important that they fit perfectly. The process with First Steps is taking longer than I hoped but I pray that we have hearing aids in her ears by the time she is three months.

This week has been stressful and we are really looking forward to the weekend. All three of us.

Shannon

The Sound of Music

This weekend I was on my way to get my hair done and I was totally jamming to my ipod. Music up, had bobbin like the typical December day that it is 60 degrees. I was half way there when I just stopped. I stopped and listened to the music. I actually had to pull over because I was having a moment.

Will my daughter ever hear the sound of music? Music is something I live by. It heals me and always has. I listen to everything from country, hip hop, classical and now of course Christmas music. This is a part of my life that I take for grantite every day. I want that same thing for Riley. I want her to be able to dance to the Wiggles or whatever Disney group they have for toddlers these days. When I was pregnant with her I had such big dreams for her, and I still do. I wished for her health, drempt about her education and her taking over the world. Now I found myself wishing for the little things....I want her to hear the birds, to be able to say Mamma and Papa, to hear the train behind our house, the sound of splashing water when she baths, and also the sound of music.

That is why Riley's father and I have chosen to go the Cochlear Implant route. I am hoping to get bilateral implants (meaning both ears), hopefully be the age of 12 months. After Saturday I came home and did so much research out there about the process, the surgery, the results, and the dedication to making our daughter hear. I found countless stories, you tube videos and blogs about Cochlear implants and children that are in mainstream school that are hearing like their peers. How does a child go from deaf to hearing and talking like their peers. This is a whole new world to me, a world I never thought I would be in. I find my stories very similar to other mom's out there that would stop at nothing to get their child the best care. We are doing the same.

I am going to contact the IU Health Cochlear Implant Team at Riley Hospital (its a sign, I know) to get moving on the process for candicacy. This process takes awhile, lots of testing and then you have to be approved by your insurance and the FDA....this is no joke! However I could care less, I will drive  there everyday if it means Riley will have the best care. Indiana University was one of the first facilities to do the cochlear implant on a child and was an advocate for the FDA allowing the procedure to be conducted on a 12 month old.

Does all this research and statistics make me feel better? YES. Does the pain hurt any less that our daughter had hearing loss? NO. It hurts. It stings and sometimes I feel numb. She is the most precious thing on this earth and I would not wish our journey on ANYONE. Would I take back or change one thing about Riley. Absolutley NOT!

She is going to teach me more than I can ever teach her. The first time she says mamma I will cry for about 2 months. I know ever mom loves that moment but this one will be special. The research, the driving, the sleepless nights and the speech lessons will all pay off and the reward will be the biggest reward I have ever had. Bigger than any education I have, or accomplishment I have abtained.

I am going to dedicate this blog to our journey from here on out. NO more Pinterest, what I did today, or talking about Reality TV. I am on a mission and if one other family can benefit or heal from reading our story then it is worth it.

Thank you so much for my family and friends that have supported me through the past eight weeks. It has been hard but I know we have such a great support system that Riley Mae is in great hands. We love you.

Shannon