Tuesday, October 19, 2010

Trying to be strong for our daughter

Tonight I was reading to the Dynamic Duo before bed. The book that I was reading to them was one that Katie could definitely help me with since her reading is really coming along. I asked her to read a couple of sentences and she strained to see the page. She put her face all the way up to the page so that she could see and she was struggling big time! I asked her whether she could see and she became defensive and she said that she could see it. She definitely could not see it without being on top of it. I had to try my level best not to cry....I saved my tears until after she went to bed. I then had a big time boo hoo session. I needed it.

As I was brushing her teeth I told her that sometimes when people have a hard time seeing words on a page that they could learn an alphabet that they can feel with their fingers and they can read books that way. She asked me what it was called and I told her it was called braille. I asked her if she would like to learn braille and she told me that she would...it sounded cool. I better take note of my daughter's positive outlook pretty quickly because all I could think at that time was that we were teaching her how to read the written word but that she may not be able to do so for very long.

I pray that this Friday when I take her to see the specialist down at Bascolm Palmer Eye Institute, that they are able to prescribe new lenses that will give her a greater field of vision for now and that they can do so for a long time.

I know that there are worse things and that it will someday be our new normal but I hate this. I hate it more than I can ever express.

20 comments:

PletcherFamily said...

We are thinking about you guys. We know exactly how you feel. Tonight I was watching Glee - it was the episode with the deaf singers. And I found myself wishing that was our daughter instead. I would rather her be losing her hearing instead of her sight. Terrible, I know! But not to see the world - it just seems so unfair. We hate it too.

We used to live very close to the Bascolm Palmer Eye Institute in Palm Beach Gardens and it is FANTASTIC. Can't wait to hear how the appointment is.

Diana said...

Your family is in my thoughts and prayers. I honestly do not know how you are "doing it all"..You are a amazing mom and Katie is a amazing little girl. Hugs to all of you.

M and M Girls said...

You are in my thoughts and prayers. You will find hidden strengths to take with you are you journey through this.... sometimes you will lead and sometimes Katie will lead. The most important thing is that you are holding each others hands and you will never lose "sight" of that. You are an amazing mother and Katie is an amazing little girl.

Christina said...

Your family is definitely in my thoughts. It's amazing how children can be so positive when we, as adults, can only see the bad.

I hope your appointment with the specialist goes well and that they can help Katie. I work in clinical trials and I always recommend checking into that for rare illnesses in order to potentially find a treatment that could help. check out clinicaltrials.gov or drop me and email (it's on my blog)

Missy said...

Lori,
I am so, so sorry!!! As Katie finds new ways to "see" her world will be opened up wide again. I know this must be difficult for you all, but her positive attitude will take her far. Hugs!!!

Gail said...

Lori, I know this is unfair and you hate this. She is a strong little girl and you are going to help her through this. I'm praying for her (and your family) as you continue on this journey.Hoping you get some positive news with her new lenses.

Love you SFAM!!!

dawn said...

.....there are things that are worse.....
This is the worst for you. You don't always have to be superwoman and that's OK too. Cry, bang your fists, you are allowed.

Love you and can't wait to see you on Saturday. I owe you a hug.

Teresa said...

My heart breaks for both of you. I'm so sorry you're going through this.

Steffie B. said...

I am so sorry Lori but so so so thankful that YOU, you my friend, are her Momma! God gave this child to you because He knew that only YOU could get her through this and walk this journey with her. We are praying for strength and courage for you, for an inner peace that will come in time and for your precious girl.

Love Letters To China said...

I'm sending you big hugs over the lines right now. You are an amazing mommy and Katie is so lucky to have you in her life. I wish we lived even closer so during these times, we could lean on one another more. Hugs to you.... prayers will be going your way for good news on Friday.

xoxo,
Grace

Lisa said...

Oh, Lori - I shed tears of sadness right along side you. I don't know how you do it either, but somehow you do. You are gently arming your girl with the tools that she - and you - will need, hopefully much later than sooner. I pray for you, Katie, and the rest of your family as you all make your way down this new and scary road.

DawnS said...

I should have had a box of tissue beside me before reading this post. I am so sorry! This just breaks my heart, and yes there are worse things but this sure does rank right up there pretty high. It's okay to be angry, sad and grieve over things that hurt our children. I am so thankful that Katie has you in her corner. She will have a beautiful life, I know you will do everything in your power to assure that. I wish I could give you a big hug in person, but for now I just have this {{hugs}}.

Vivian M said...

We hate it too, it is totally unfair!!! On the other hand, I think you are doing an admirable job of hiding the sadness and tears from her. You are stronger than you know.
Sending you all huge hugs and hoping that Katie's new glasses will help her see better!

Shana said...

Hi Lori, I rarely post but I do keep up with you on FB and I know you from way back in the day when you were with TWCA. I admire you for the strength that you have and for fighting for your kids. I did not know that we would have a special needs child with Cerebral Palsy when we adopted Kyan but I do know that I am a better person and better mother for having him in my life. As you obviously know that with your dynamic duo. But, I cry sometimes because I don't know what the future holds for Kyan and I cry because I panic and feel I am not doing enough. I just wanted to let you know that you are not alone and that I understand also. Always thinking of you guys even if I don't post often:)

Anonymous said...

God bless you and your family. Isn't it wonderful to know Katie's little brother Ethan will help and guide her for the rest of her life.

TK said...

I don't know how to email you directly, but I wanted to send you a link to a lady. I heard her this morning speaking on K-Love. She lost her site at 15 years old. Here is the link to the site about her. She is an author.
http://www.jenniferrothschild.com/
I thought maybe you could contact her.

Kim O

Donna said...

I know your heart is breaking. Mine aches for you too. :::hugs:::

Donna
Our Blog: Double Happiness!

LaLa said...

I am so sorry....I know you needed a good cry and I am so happy she is so positive right now. Thinking of all of you!

The Murphy Family said...

Hello Lori,
Please know that we are thinking of you and praying for your family. Our daughter, Madi, is also a Wuwei princess. We live in Delray Beach. You and I have corresponded in the past but never connected. Anyway, we've been following your story and our hearts are with you.
Love,
Lisa Murphy
www.everythingmadi.blogspot.com

Christi and Abbey said...

I went to the site that TK mentioned and there is a great clip showing some very cool technologies that are available now for the visually impaired...
http://jennroth.typepad.com/journal/2008/04/appearing-on-go.html
You are one brave mommy and we are all pulling for you and your family!