"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Thursday, July 29, 2010

My goal is...

that no one will ever feel lonely like we did.
When Lilah was diagnosed, at 18 hours old, Dr. "D" told us that "God didn't make these eyes right" and "You are at the beginning of a very long road." He did not hand us any resources, tell us of any services, nor did the hospital or our pediatrician. The phone calls stopped. We sat, weeping, alone in the hospital with just one nurse that came to check in on us. No social worker...nobody. I thought this was what happened. You find out your child is "different" no one knows what to do...so they ignore you.
For 5 LONG months we mourned, grieved, cried, prayed, wept, felt alone and lost without anything but our faith in the Lord. Friends and family tried to offer some emotion support, but no one led is in the right direction with therapies, services, medicaid, disability, etc. No one told us simple words that would have gone a LONG way...they could have said, "Yes, she's different. Yes, she will be delayed. Yes, she will struggle...BUT...she will be ok and you are NOT alone."
Once the initial shock, awe, and "what do we do now" set in I remembered Babies Can't Wait.(BCW) My friend worked for them and I knew it was a service for disabled children. But that was about it. I had NO idea, was never told, suggested, or given any idea that Lilah would be delayed due to her Visual Impairment.
I don't want anyone to feel pity for Lilah, for us, etc. What I want is to make change. What I want is tell my story and make sure that NO other parent or family feels as LONELY as we did.
I believe that someone...anyone could have...should have....given us a better direction in the beginning. We cannot go back...but we can ALWAYS move forward.
I am committed to re-tell my story over and over until change, in this city, is made.
As the Lord would have it...HE has supplied me a way. Through Facebook....and a chance meeting at Backus Memorial for therapy....I met with Katrina Laygo of Something Special Magazine , here in Savannah, Ga, and have shared a portion of our story with her. She is on a mission, with me, to make sure that no other Mom feels like we are ALONE!
I am determined to help other parents know that no matter the circumstances, no matter the diagnosis... Someone IS there and will be there to help you on this path.
The Lord gives us our children, the RIGHT children, for a reason....Thank you God for my reasons!

Wednesday, July 21, 2010


This afternoon I decided to get an updated photograph of my children.
this is what happened....
Thank you God for trusting me with these MOST precious gifts!
Aaron has already informed me that we need this LARGE on our wall...sounds good to me!

Wednesday, July 14, 2010

Not many

As Lilah and I navigate the streets of Holland.....

I have come to many realizations about Lilah...and about myself. I have realized that I am different. I have learned what I cherish most, what I need, and what I want to surround myself and my family with. I have discovered that most people living in Italy have no time or desire for Lilah...or me....and that is OK.

I still love those people. I don't want anyone to love Lilah out of pity. I want people to see her like I do. She is amazing.

I would also like people to give me a chance. Sometimes as a Mother of 4...I am busy. OK...let's be really honest here..I am always busy. But...just like all of us I want to be understood and...

even though I am managing 4 kids and navigating my way in this new world..I still desire to be accepted just like everyone.

This has really gotten me thinking about acceptance.

Don't we all want that?

I remember trying to fit in, be accepted in school, functions, etc. I never seemed to measure up to the standard that was being set. I know as I look at Lilah and see how "different" she is...how she will face even more of these challenges and adversities.

I hope that as she grows I will be able to surround her with people who are loving, caring, giving, and accepting of her...just as she is.

I think that lately the reason I have felt so lonely, so lost, so isolated is because I am becoming aware of how those people I once really thought were my friends...never really cared at all. Having a child with a disability shows you who people really are on the inside. I think my circle of "friends" has dwindled down...and this has really been a hard time for me.

I have always considered myself a people person...now there aren't many people there.

I don't want this to be a "aww, poor Katie" moment...trust me...I do that enough for myself.

I must say that this path is a very lonely one. Life happens, people change, but during those times you also find something out about yourself.

As people have pulled away because they cannot handle it...me...all of it...I have had more doors open...and people I would have never thought cared...are there. The people I use to talk to each and everyday...barely, if ever, call. But, that is OK. I have learned in these weak moments that I can be strong...I have to be. I am fighting each day for Lilah. I am fighting to get her therapies, services, and I am fighting to get her to where she needs to be.

I will never wear the right clothes, drive the right kind of car, make the right amount of money, impress people by my material possessions...but I will always have a heart that loves and desires to be loved in return.

I pray that as Lilah, and my older three, grow... I will be able to instill in them a confidence in Christ so they will never feel alone. I pray that I will be able to guide them to love, nurture, accept , and respect all kinds of people.

Friday, July 2, 2010

Thanks Christy!

When Lilah was diagnosed I remember thinking ALL kinds of crazy things....

"Will she be able to dance?"

"Will she be able to run?"

"Will she be able to drive?"
(in Ga legally blind persons can drive depending upon their acuity)

This morning I got THIS in an email from my friend Christy, a NASCAR, fan.

MY baby WILL be able to do ANYTHING...yes....ANYTHING!