Happiness

Saturday night at church as I was about to drop Lilah off I watched several other "toddlers" screaming not wanting to go back with Rosie. (Aaron had already gone to the room where we serve)

When it came time for Lilah's turn. I kissed her and handed her to Rosie. Lilah turned her head around and started to wave to me. Not a cry, complaint, tear...just a smile and a wave.

All the other Moms and Dads watching said, "awww!" And I said, "I love you. Have a fun!"


After Aaron and I finished serving with the 3 year olds, we walked back to go check on Lilah. Through the one way mirror we saw all the "toddlers" playing, crashing cars, pushing buttons, playing with puzzles, running, screaming, etc. But not my Lilah. Lilah was on the floor on her belly, cheek smashed to the floor, as she normally does when it is too loud, too much activity, too quiet...anything that is "too much." Lilah was trying to "self soothe" in the midst of the chaos.


Aaron and I stared at her through the glass. No one could see us. We watched all these children play..and we stared at our girl. We LONGED for her to get up, play, be a part of it all, do those "normal" toddler things...but she wasn't. She was just laying there. See Lilah does this when she is over stimulated or when she's not being spoken to one on one. This is just part of "her."


I sat in church during the worship service thinking about what I saw. I began to get sad. I could feel it. I could feel the questions start to rise again.
"Why her?"
"Why does she have to be so different?"
"Why does she have to be the child that looks and acts different?"

WHAT was I doing?

I completely let an AMAZING moment skip out of my head for a brief 3 minutes we watched her. I let 3 minutes change my mood and my thoughts. I allowed Satan to work in my head and make me question everything. Right there in church. WHY? Why did I do that?

because I am human...and sometimes it hurts

But, I praised God for all that he has done, and prayed during Cam talking. And God reminded me of my girl. Of that moment just two hours earlier when Lilah was the one calm child going back to play...


and that is when I leaned over to Aaron and whispered in his ear what happened. And he smiled. That smile on his face. The joy of knowing his daughter waved at his wife, without prompting...reminded me to focus on what Lilah DOES do...

Lilah is happy. She is by far the happiest child...ever! She doesn't know anything other than she is LOVED and loves us in return.

I didn't let Satan win that night. I might have let him creep in my head...maybe I allowed him to control my thoughts for longer than I should have. BUT, I knew what to do. I prayed about it. I praised God for ALL of my blessings, even in the midst of uncertainty, and you know what....

When I waited in line to pick Lilah up and saw her coming around the corner on Rosie's hip....she was smiling...and shaking her legs and arms giggling and dancing with excitement because she knew she was about to see her Mama.

And my heart MELTED!

and all the Mommies behind me went..."aww!"

Happiness!! Happiness is LILAH!

And a special HAPPY 36th Birthday to Aaron today!

Cane Introduction

Today Lilah's O&M specialist introduced her to the White Cane. (click on the word to read all about white cane)

I remember when Lilah was diagnosed, and Dr.D told us Lilah would be blind...I was so fearful for SO many things. I don't know why I was so scared. So nervous. Fear. That's right. Fear of the unknown. Fear of a life other than what I had dreamed for my child.

Today, I see life very differently.

I am not scared for Lilah. I want the best for her. I want Lilah to be able to be as independent as possible and live life to the fullest.

When Yinka, Lilah's O&M specialist, (click on O&M to read what she does for Lilah)told me a few months ago that Lilah would need to be cane trained, braille trained, and probably have a guide dog, I didn't understand why. I thought, "But she's not blind." See, Yinka explained to me that even if Lilah may not need the cane all the time, she would need it sometimes due to her depth perception being off. Lilah's two different visual impairments don't allow her to see the world like you and I do....but she can see something. Yinka has opened my eyes to many things about Lilah. She has explained to me that Lilah may not need all of these items, but she should be trained, in case she does. The eyes can get worse. She may one day be "in the dark." She may one day have amazing vision. We just never know. It really is in God's hands, BUT...my job is to educate myself and Lilah...and guide her so that one day she is able to do things on her on...if possible.


Today when Yinka walked in I saw the cutest little white can sticking out of her bag. I was SO excited! I couldn't wait to see what Lilah thought of it.


Instead of being scared that it would be another "label" in her life. I saw it as FREEDOM!

Freedom for Lilah to be able to touch things in front of her and know that it is coming. Freedom to walk without FEAR. Freedom.

Boy oh boy has this journey changed me!


I grabbed my cell phone first and snapped a picture, then I grabbed my camera. Before I could change my settings...she dropped it. But, I was able to at least share this image with you of how cute it is. This one isn't Lilah's. But...it gives you an idea what a cane her size would look like. Yinka even told me that they make them MUCH smaller than this. Do you see what I see? A WORLD of possibilities just waiting for my girl!

Thank you, God, for Yinka, the white cane, and for learning each day what will help my girl!

The future is SO bright for Lilah!

Just got confirmation..

I promised I would keep you posted....


Lilah's story will be shared at Savannah Christian Church on 2/12/11 and 2/13/11.


As my kids say, "Mommy, you're going to be on the BIG screen." Praying my openness and transparency will help lead others to know HIM like I do.


I invite you all to join us. I will go with you. I will sit next to you...and I will be there to help you with any questions you have. And if I don't know it, I will help you find it, because we can all learn from each other.

HOPE for a future!

After Lilah's diagnosis, at 18 hours old, no one told me of all the things that Lilah COULD be able to do in her lifetime. This blog has allowed me to "meet" so many people that have helped me on my journey.

After asking repetitively for help, for guidance, for information to help Lilah, Barbara (click on her name to view her page) directed me to Richard Favinger's blog. Rich is an awesome legally blind photographer. Yes, you read that right. (click on his name to see his work. Click on the word "blog" after to view his blog) Rich teaches Judo to visually impaired children in Pennsylvania and he also happens to have a great "eye" in photography. Rich gave me LOTS of advice about Lilah, photography, and he also helped me "see" in many more ways than I originally did.

Rich stopped blogging, and commenting as much, and I knew why....he found LOVE!


He "introduced" me to his girlfriend, Kit, through Facebook. Kit is a scuba diver. A blind scuba diver. I was able to "chat" with Kit and learn from her. One of the most simple, but "eye opening" things was when the two were "laughing" on Facebook about Kit "waving around a hot device to straighten her hair, oh and did I mention that she is blind." That little comment opened my eyes to realize that no matter what Lilah would still want to feel beautiful like all girls do. She would want to put make-up on, play with her hair, jewelry and more. I made sure to tell Kit and Rich each time they helped me "see" more clearly for Lilah.

Well, a few months ago, I got a message from Rich that he wanted my advice. I was shocked. Me? Why me? And then I scrolled down the page and saw it....it was a ring. He wanted my thoughts on if I liked the ring choice for Kit. I immediately got goosebumps. "YAY! They are getting engaged!", I thought. I wrote back to Rich several times and told him my thoughts and he told me exactly why he had chosen this ring for her....because she could actually SEE the contrast in it. I was SO honored that he asked for my thoughts. I know that, to him, he was just getting another woman's perspective, but to me...it was so much more.

I had HOPE for Lilah. That one day she would find LOVE and be LOVED in return.

Recently Rich and Kit were interviewed. Click HERE to see it!

Their story made me CRY. Their story brings me such JOY and HOPE for my girl. Not only can she do ANYTHING she wants, but she will also be LOVED...and will someday marry.

Congratulations Rich and Kit! And thank you for bringing such HOPE to me and my family...and to all who read this blog!

More than meets the eye

Look at this picture:

Go back and look again, but this time look longer.

Do you see how strong she is?

Do you see her looking outside?

Do you see her playing with the strings?

Do you see her reflection in the window?

Do you see what I see?

• A beautiful little girl who has defied all odds
• Strong
• Patient
• LOVING
• Sees more with her limited vision than we "fully sighted" people do
• has the softest, most gentle touch
• Will do anything she wants
• is a GIFT from God

I read something this week that changed me.

" Let's restore the hopes and dreams we had for our children before the diagnosis. and do whatever it takes to turn dreams into reality. If we don't dream out-loud for our children, how will they learn to dream for themselves?" Kathie Snow (Disability is natural)

See, when I was pregnant with Lilah I knew nothing of her disability. I didn't know if she would be a boy or a girl. All I knew was that my baby was healthy. We had every test done. Nothing said I was high risk or needed any special "extra tests." The ultrasounds we had never pointed to anything "abnormal." So, I took deep breaths after each test and began my dream for this child...

I was devastated when I learned of her disability at 18 hours old. Why? Why would I be devastated? Because my dream was squashed by the words that came from Dr.D's mouth. I couldn't see or hear anything but the words that he said. I never heard, "but she will be OK" or "this may be a long road, but you will see more than most people" or "she may be blind, but she will live a fulfilling life." There were no words of hope. There was nothing positive. Only the worst. So, I stayed there. I stayed in that place of misery for longer than I should have ever stayed. I look back at that time and wish that I hadn't wasted so much time being so sad. Why was I sad? Why didn't I see the gift I was given? Why did I let a diagnosis consume me? Why? Because I am human. I have human thoughts and emotions. I have dreams and hopes and wishes like we all do. But, I also have a very strong faith that has guided me on this journey. This faith, and my walk with Christ has strengthened so much in the last two years. Lilah was given to me to teach me, to teach my family, to teach us all...

I have changed my perspective. I have changed my thought process. Instead of staying in misery, I choose to stay in HOPE. When something negative is said about Lilah, her future, or what she "is and is not" I am learning to find the good in it. Yes, I admit to being honest and very human and allowing myself time to grieve and be disappointed, but I also choose to see what she IS and CAN rather than what she cannot. I now know what to do to get myself out of the pit of misery and wrong thinking to the place of peace and HOPE. I pray. I ask others to pray...not just for the hope of improvements and growths, and gains, but also for peace and trust in HIM when life isn't what I want. I surround myself with other believers and ask for their guidance. I go to church and praise Him for what He has given me. I praise Him for the miracles, for the things I have learned, for what He has taught me. I praise Him, even when I don't understand and see the bigger picture. Two years after hearing that news, I see why He chose me. I see things in myself that I never saw before. I have chosen to tell Lilah's story over and over and over again to make sure NO other mother feels as lonely, and as sad, and as hopeless as I did. I am determined to tell how the "ball was dropped" and we were left alone in that hospital room. No social worker, no one, NO one prepared us of the road ahead. No one told us that she may be delayed. No one told us of services, or help, or programs, of other parents. Nothing. No information was given to me. So, I am determined to help this system. Instead of sit and complain, I am in action mode. I have shared Lilah's story and she has been in a magazine. (Something Special) I have shared her story with our church. (Her story will be shared on "the BIG screen" as my kids call it, very soon. I promise to share when) I am honestly sharing my heart on this blog. See, God knew that I would be self-less and want to help. He knew I would stop at nothing to make sure NO one ever felt alone again. He knew that I would help fight for other parents, kids, etc so we could all find HOPE. He also knew that when those people thought they were making negative comments about me growing up like, "you never know what Katie will say" is actually a very good thing. You are right. You never know what I will say, and I am loud, and I am honest. And I will share the good news of Christ and what He has done for all to see. See, God made me to be a witness. He gave me Lilah so I could slow down and see Him more.

Today I see Lilah's future as open and free. She may be delayed and slower than most, but that doesn't mean she can't do anything she wants. And she will. I believe in her. I have faith in her. I will do whatever I can to help her achieve her dream. And I will be grateful for her everyday of my life!

If THIS doesn't make you smile, then I don't know what will...

Beatboxing Lilah

Isn't she just the CUTEST thing?

Showing off

I consider everything Lilah does an accomplishment. Every growth, change, milestone...everything I consider a mountain she has overcome.

I look back at the baby who was scared to roll over at 5 months old. I think about how far she has come and how MUCH she is doing.


Lately, Lilah has been doing a "tall kneel" by pushing up through her legs and doing this "hands-free." Lilah will get very excited and start dancing and this is what she does:

Look at that STRONG body. Look at that torso. Look at that form. Look at the determination. Look at how FAR she has come.

To me, THIS is success. I celebrate this as a HUGE accomplishment.

and look at how BIG she has gotten...(thank God Aaron carried her in the neurologists office. They weighed her at 35.5lbs)

I knew it, but hearing it still stinks.

Yesterday, only 3 days after I had surgery to remove cysts, endometriosis, and severe adhesions that had attached both sides of my bowels to my abdomen, we heard the MRI results.


I could barely walk, let alone sit in the chair comfortably, but...I was determined to be there. Aaron carried Lilah, held my hand and we made our way to Dr. Moretz office.


I knew that this was not going to be the results we wanted to hear. I had a very strong gut feeling that we would hear news that would change our course one more time. Not that I was being negative, but I knew. Deep down inside I knew. I have said all along that I feel as if everyone knows something about Lilah, but they won't tell me the truth.

Dr. Moretz said that her brain MRI showed that her white matter didn't all form the right way. It can be "somewhat common" however, because Lilah is so delayed it shows that she is more "globally delayed" or that "R" word that we feared.

I am GRATEFUL I followed my gut and asked for the lumbar spine MRI, because my intuition was correct. Lilah has tethering of her spinal cord. Dr. Moretz said Lilah does not have spina bifida, but the tethering is there. She has referred us to a neurosurgeon. She told us to get several opinions before we decide on surgery.

Surgery. That word alone scares me...but on my child's spine...shakes me to my core.


I didn't hear anything shocking. I heard what I anticipated to hear. Aaron didn't say much. He got very quiet. Poor guy had already been under so much stress with me just having surgery and now he was hearing that once again his baby was even more different.

The ride home was so quiet. The radio was on, but it seemed as though we were riding in silence. It was deafening. At some point I wanted to snap my fingers and the entire day not have happened.

This is how I feel: This course with Lilah never stays the same. There has not been a "here, this is your child, this is what she has, this is how you deal with it." There is a constant change. There is a constant up and down. The road never stays the same. We keep getting different and new information. THIS is exhausting...emotionally and physically. When can we get ALL the information on Lilah, know what we are dealing with and then navigate our path. Why does everything have to change SO much?

I told Dr. Moretz that I was fed up. I told her that we have done all these tests, and have no answers. I told her that we have done the geneticist, the blood tests, Aaron and I's blood, etc, etc. We have tried to get answers on Lilah, but keep getting nothing. She told me she would call the geneticist and see what the hold up was.


At 6:30pm last night Dr. Moretz called. She told Aaron that she was sorry that we haven't gotten any answers, but she is determined to take matters into her own hands and get results. THAT was a big shocker, but was also a HUGE relief. FINALLY, someone with MD at the end of their name wants to help me find answers about my baby.

I woke up this morning in a LOT of pain, followed by a HUGE realization and sadness. I began to cry and get sad, "WHY? WHY? WHY?" My mind began to race all over the place. Why Lilah? Why does she have to have one MORE thing? Why do we keep getting half answers? Why does this hurt so bad? I tried to crawl out of bed. Mind you, I have a swollen belly and I am carrying around an extra 15lbs of water weight and swelling.

I began to be very fearful. I allowed Satan to enter my mind and take over. I allowed him to let me go to that place of hopelessness, fear, and sadness. I allowed Satan to let me be mad at God. But, that is OK. God isn't mad at me that I am mad at Him. God isn't mad that I am questioning. God won't stop loving me or Lilah, even when I am fearful and sad. I allowed myself a long cry and then I felt HIM say, "get up."

I don't know why God has chosen Lilah for this path. I don't know why God trusted her to me, but I do know that I will not give up and Satan will not win. I will love Lilah and be the best Mama I can, no matter the circumstances.

So, even though I feel like death, and look like crud, I will do what I know is the best thing. I will be at SCC tonight and reconnect myself with God. I don't understand why He has allowed all of this to happen to me, Lilah, to our family, but I love Him for giving me Lilah.....just as she is. So,I will be there tonight to praise Him, even when I do not understand.

Things we do during treatments

Because Lilah's tube fell out(while she was shaking her head "No" repetitively during the nurses trying to find her veins(and blew 4)) I have started her breathing treatment regime. Trying to keep her healthy!


I love that she chats so much in the morning. She gets that from her Mama!

As iron sharpens iron

The title of this blog post comes from Proverbs 27:17 "As iron sharpens iron, so one person sharpens another"


Some days this journey feels SO lonely. I can stand in a room with people all around me and still feel like I am the ONLY person on earth that is in this place. What I mean by that is this...there are no books, no directions, no plans, no "this is what you should do" when you have a child with special needs. Parenting alone is difficult. Parenting a special needs child takes more than you can imagine. Finding the strength, courage, will, determination, and FIGHT to navigate the roads of this journey are some times filled with uncertainty. Constant questions in your head...
"Is this Doctor right for her?"
"Why did that therapist do that?"
" Will this help her in the long run?"
"Am I putting her through so much pain during tests?"
" Should I stop what I am doing?"
"should I do MORE?"
"Should I fight harder, beg for more and push her until she gets "where" she needs to be?"
"Do I allow her to be a kid and stop or limit therapies, tests, procedures, etc?"
"What about......"

And the list goes on and on and on...EVERYDAY!

There is never a break or a "YES! This is it. THIS is the right thing for Lilah." I am the type of person who is always thinking and researching and wondering if I am doing "enough" to help my child.

While writing this blog I have met some wonderful "friends", made connections, learned from others, but I have also gotten some comments here that have been PAINFUL, hurtful and mean(even after changing the title of the "comments" to "generous words of hope"). But, nothing in this journey is easy, and when I open my heart for the world to see...someone will not like it. Many probably dislike it a lot because I speak the truth. I quote scripture. I believe in God. I believe that Jesus is my saviour. Then there are those who write me emails that are little words straight from God to let me know HE is proud of me for telling the truth during my journey with Lilah. Telling the truth that I have amazing days, with some very painful moments.

I received an email the other day that I would like to share:

Hi Katie,

I've written you before. My daughter is 4 and totally blind. I came across this quote a while back and have had it on my fridge ever since. It has helped me through so many hard times.

"I am grateful for the progress, trying to learn to see God in the pain, and hopeful that I can become who God needs me to be for my family through the days ahead. But, for now I relish in the progress of today...even if there was pain involved."

Thank you for being so open with your feelings on your blog. I don't know how many tears I've cried with you, for you, or for myself and my Addison while reading. You have helped me to not feel alone in this journey we are taking. THANK YOU!!!!!

Kathy

WOW.......

See, I needed those words. I opened the email, again, when I was having a hard moment. I am having surgery Tuesday and I am running around trying to find help, sitters, drop-offs, pick-ups, figuring out what needs to be done before then, etc. THEN...Lilah's neurologist's office called and instead of giving us the results, of the MRI, over the phone( as she did last year), the nurse told us that the Dr. wants to review the results with us in her office. FEAR immediately took over. I was in the middle of helping Alex, my oldest, with her homework. I put on the brave face and tried to help her and then.....the tears began to fall down my face. Nothing will change Lilah. Not a result. Not an evaluation. Not anything. She is the sweetest child....EVER! But, I am human. I am her mother. I worry. I see how this world views children like her. I know that God sent her to me to help change the world, and I trust Him, but the path and the pain...is sometimes very hard. I feel as if I can never have the truth about Lilah be for sure. First it was "she's blind", then it was "there is some sight" then it was "she has more than a VI" then it was "she's really delayed" now there might be something wrong with her brain? I would like the roller coaster to not have such HUGE dips. I can handle the ups and downs and twists and turns, but such HIGHS and LOWS. Sometimes I feel as if I am going to fall off. No consistency at all....and then, THIS is where my FAITH takes over.....just when I am at my weakest and I cry and shout and scream out of pain...God whispers in my ear, "I am here, Katie. You are not alone. I am not watching in the bleachers. I am carrying you and Lilah. I will never leave you. I love you." And THAT is when PEACE and calm overtakes me.



To Kathy,
I cannot thank YOU enough for writing those words. To know that someone out there feels the same way is priceless. To know that my transparency is helping someone else means I am honoring God. Thank you for hearing HIS call and writing me and speaking HIS words to me. I am here for you!
Katie

Sweet Sounds from Lilah!

My sweet Lilah is trying SO hard to find ways to communicate with me.

I just adore her!