Poor Girl???

Last week at the YMCA daycare, the daycare student smiled at Riley Mae and said "poor girl", with a smile and open arms. Poor girl?

Now let me give you alittle background....

Riley was born with EVA which is an enlarged vestibular that makes her have little to no hearing in both ears. This condition usually gets worse over time, and it has for Riley. She was born with some hearing in her left ear, and over time...it was getting worse.

We, Josh and I, decided to get her cochlear implants in both ears at 9 months old. Research shows that the younger the child gets implanted and starts getting stimulation of sound, the better chances are of them developing speech and being at the same level of their peers.

Now let me skip 9 months and now she has had the surgery, gotten activated in BOTH ears and is happy as can be. She babbles, looks to sounds, claps and is now waving to everyone! Would you call that a poor girl?

I actually feel for moms that don't take every single word and movement their child makes for granted. Last night I was talking to Riley and I said HI RILEY.....she looked at me and waved. She listened to me. She didn't just hear me, she was listening. I cried! How many moms can say that. It is just natural for them. Every time Riley listens, I notice. Every time Riley makes a reaction to sound, I notice. It has made me a better mom. 

 

Two weeks ago I was playing with Riley and I started laughing (which is a loud annoying sound) and Riley dropped everything a looked at me and just had such a big smile. She heard that. Those are the moments I would miss if Riley had normal hearing. Every little sound I point out when we are outside...the wind, the trees, the birds, cars, everything. Would I do that if Riley had normal hearing?

So many times we are so busy that we don't notice how are children develop. How much they learn through their environment. I can hostly say that I am NOT guilty of that. I work full time, teach 3 spinning classes a week, have speech therapy for Riley once a week but I still notice every single move she makes. We she hears her toys, I notice. She has broughten me that gift. The gift of motherhood that most moms don't have. The gift to be happy when my child is talking to much, or waking up the baby, or being loud in a restuarant.

So many times I see complaining on Facebook about such small miniscle things that make me think....that poor girl. She doesn't realize that even though their child is waking up the baby, or running around like a maniac screaming, she has a gift that she takes for granted. That will be something that I never take for granted...something that makes me smile everyday. Riley will have more than most kids I know.

Now do you think this is a poor girl???

Shannon

10 Month Pistol

Ms. Mae,

 Well little girl, I would have to say that we've had quite the road with you. After your surgery, you have been back in the hospital for 4 days, then home for 2 weeks, and back for 2 days. Your on two different medicines and this time for 4 weeks! This infection will just not let up. I have a feeling we are going to be back again.

You are one strong little girl. You don't ever give up. You go at your own pace. And when you want something...we all know about it. You laugh. Oh boy do you laugh. Your dad's really the only one that can make you belly laugh for a long time. You just find him so amusing...it's hilarious.

You are hearing so much with your CI (right side) that it is amazing. You look to sound now, look to toys that make sounds and most importantly...you dance! You heard mama laugh for the first time the other night. You stopped, looked and smiled right to me. It was the bet moment. You keep shining and learning more everyday. You lost your voice because of all the talking you do. IT'S GREAT.

We're still working on crawling, which you dispize, but you are all about standing. I think you say "only babies crawl", I'm gonna walk! That's so your personality. We still try and one day we will be chasing after you. Don't grow up too soon, go your own pace.

You love food. Any and all kinds. We fed you chicken for the first time last night and you LOVED it. You eat everything that you can get your hands on to. If you don't like it, you push it away...far away.

You love bath time, sleeping, all your toys, putting things in your mouth, going outside, swinging on your swing set, Rome, swimming and believe it or not, taking your medicine. There really isn't anything you don't like...well maybe cottage cheese, but we will work on that.

You're in size 12 month clothes-12 MONTH! That's like a toddler...gosh you are getting so big. Size 3 diapers and growing by the second. The last check up went great. You are now 18 lbs, and 23 inches tall. This was your first time on the growth chart, only 7% but you're still on it!

There isn't anything we wouldn't do for you. You have so many people in your corner, more prayers then god can possibly keep up with. You are only lucky little girl, not to mention fashionable. I look forward to everything life has in store for us, the good and the bad. You are truly my sunshine in everyday. I love you to the moon and back, more than peanut butter and jelly sandwiches!

Love,

Your Mama

9 Month Baby

Since Riley's 10 month is tomorrow I naturally thought it was time to update the world on her nine month. ahem. Well TECHNICALLY if you look at gestational age she is going to be nice months, so I'm on track. Right?

My Sweet Riley, I can't believe your only 9 months when I feel like you've been in my life forever. You have such a personality and such a little person that you feel like a 9 year old, not 9 month old. You are such a charmer and everyone just loves to be around you. You are a one happy happy baby.


 Love your sleep; you will sleep 10 hours a night and be ready to play when you get up. You laugh out loud and play with whatever you can get your hands on. Everything goes right to the mouth. Every. Single. Time.

You love love love to eat. Sweet potatoes, apples, advocato, peas, bean, banana, pears...you name it. You get so excited when you see that bib coming on that you can barely stand it. Your legs get straight and you arms start going crazy. You're too cute.

This month was a big month with your surgery going on. You had such a support group there; we took up the whole 3rd floor. 6 hours of waiting, hoping, praying. Everything turned out great and Dr. Yates was amazing. I thank him everyday for his talent. He has taken great care of you (more to come).

We had our first family vacation and you had a blast. You didn't love the lake water but still had a great time hanging out with everyone. Your first of many times to sleeping bear dunes. I hope to make many more memories of vacationing with family, friends and you seeing the world.

Your are the sweetest little girl and I couldn't have even dreamed this up. I look into your eyes and see so much going on in there. Alittle bit of me, some of your dad, but mostly your strength, your courage and your ability to make everything better for everyone. You're my best friend. I love you to the moon and back. I love you more than you will ever know, more than the sunset on a summer night, more than chocolate.

 Love, Your mama

Why God Chooses A Mom

I know I have been a bad blogger and there is so much for me to document on this amazing/scary journey we have been on the past couple weeks. I will update everything in due time.

I just wanted to share this post that a good friend sent to me. She is going through the same thing I am...and thought of me when reading this. WARNING...you may need tissues.


God Chooses A Mom For A Disabled Child"

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, Nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudlege, Carrie; twins; patron saint…give her Gerald. He’s used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She’s so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel"

"But has she patience?" Ask the angel.

"I don’t want her to have too much patience or she will drown in self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy."

"But, Lord, I don’t think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness"

The Angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.."

"And what about her patron saint?" asks the angel, his pen poised in mid air.

God smiles. "A mirror will suffice."


Have a great day.

The Night Before

Riley Mae,

Here we are. The night before. Tomorrow is surgery day. Tomorrow your life will change forever. Even though you will not be activated or turned on until July 11th, tomorrow is the big day. There's no turning back. Tomorrow is when your cochlear implants and electrodes will be installed in your little 8 month ears.

I want you to know that your father and I love you very much and would go to the moon and back for you. We made this decision for you to get the implants with little or no discussion about it. We want you to have all the opportunities in the world. Not that you wouldn't if you couldn't hear, but they would be limited. We want you to be in our world. The world with spoken language and listening.

There is so much going through my head as I type this and think about tomorrow. I hope and I pray. I hope that this gives you the gift of hearing. I hope that you know who much we love you. I pray that you get through the surgery and recover in no time. I pray that everything is going to be great because we have God on our side.

One day you will have many questions about this procedure, your implants and why you have to have them. Some days I ask those same questions. Just know that you are very special to a lot of people. God only gives you and our family gifts that we need in our life. This process will make you so much stronger then you could have ever been. I know it has me. It has changed who I am as a person, a wife, a most importantly a mother.

Tomorrow you will be in good hands. Tomorrow you have so many people coming to support you. Tomorrow will hopefully change you life forever.

 

Love Mama

8 Month Baby

Dear Riley Mae,

On one hand I can't believe you are already 8 months...but on the other hand I love love love it. This is such a fun age with  you. Your personality is blooming and you are becoming so aware of your surroundings and yourself. It is amazing to see you grow every day.

You have the biggest smile I have ever seen and once you see someone you recongnize, it shines. You are going through a little stranger period where if you don't know them, you are shy. It's so cute. Once you warm up (about and hour), you are a talking and screaming away. You are a social butterfly, a charmer. You have so many different faces and you are not shy when it comes to grabbing things. Everything is game these days. Mommys necklaces are your favorite. You will find those under anything.

You love to eat. Your favorite is apples and sweet potatoes. Not a huge fan of green beans and asparagus. Which I don't blame you. I tasted it. You wont be eating that anymore. You started on a sippy cup and are still trying to figure it out but so proud of that thing. You show off when your drinking from it. Your independant.

You still love your sleep. You sleep from about 7:30 until 6am. You are a parents dream. You can now sit up by yourself but fall down pretty easy because you love it. It makes you laugh. I try to have you stand up and we are working at it. That may take more time.

In one week from today you will be prepping for CI surgery at Riley Hospital. I can't believe it is finally here. As much as I am so excited to get this going, I am scared and nervous at the same time.





\

Riley you are the apple of our eye. We love you more and more everyday. We love you more than chocolate milk, more than rainbows, more than summertime. Can't wait for the next couple months with you.

Love Mamma, 

Build a Bear

I just have to rave about Build a Bear for a minute.

As we started to plan Riley's surgery, I was really thinking of the perfect  present I wanted to her. Something special that she could have forever. Something that she would know I gave her the day of the CI surgery.

Build a Bear was the first thing I thought of. This way I can record my voice in the bear and when she can hear, she will know the significance of the bear. I want to sing "you are my sunshine, my only sunshine..." I sing that to her about everyday. It's our thing. She doesn't realize it now but she will very soon.

So looking at the the bears, I thought " they should have a bear with cochlear implants. Why don't they? So that got me all fired up. Being the advocate I am, I had to email or call customer services and ask why this was. My email was very short and sweet.

My daughter is getting cochlear implants. She can not current hear. You really should look into getting accessories for deaf children. Two or three out of every 1000 children are born deaf and cochlear implants are becoming the norm.

Really it was not a complaint, more like a suggestion. The point is I wanted to get her something that was like her. 

That same day I got a response.

Dear Shannon,

Thank you beary much for contacting us and sharing your feedback! We actually do have a hearing aid for our furry friends! You can find it online at the link below:

http://www.buildabear.com/shopping/productDetail.jsp?productId=prod81549&categoryId=cat110008&dressMeMode=false&embroidery=false&soundEligible=false&selected=

Thank you again. If you have any further questions or suggestions please feel free to contact us!

Have a PAWsome day!

Beary truly yours,



Wow they really do think of everything. Just an example of great customer service! You don't always get that these days.

12 more days until surgery.