Changes

Many changes are happening in my home.

Some of them are pretty raw and painful, but others have been a beautiful blessing.

I am only going to share the blessing right now. I will continue to be as open and transparent with you all about my walk with Christ, but the other things I must discern not to share at the present time.

Lilah has blossomed like never before.

Just this morning as I was laying in my bed reading Jeremiah 29:12-14, I had been praying God would help me give Him complete control over all in my life. I prayed that I wanted to be obedient to Him first in ALL I do. A HUGE sense of peace washed over me as I heard Lilah's sweet voice on the monitor, "up abo da worl." My sweet little miracle was singing Twinkle, Twinkle Little Star to herself. It was as if God said, "Katie, I am above this world. I see it all. I have this all in MY grip. Trust me."

So, I prayed. Again. For Jesus to help me to trust Him even when I cannot see what His path and plans are.

As I walked down the hall to Lilah's room, Eli asked if he could go "wake her up." I said, "Sure, buddy."

I walked into Lilah's room, sat on her bed where Eli was snuggling sweetly with her. I said, "Lilah, say hi to Eli."

And that beautiful miracle, turned her head to her brother, opened her mouth and said, "Hiiii E I"

Oh, goodness....

My eyes filled with tears.

Lilah loves her protective, supportive, courageous, hero brother SO much.

She trusts him. She knows he loves her.

You know, I must do that with Jesus.

I MUST trust Him.

I cannot control how other people behave, react, respond, but I CAN choose to lay my life in HIS hands and ask HIM to open the windows that HE wants...and close the doors to pathways that lead far away from His purpose.

Obedience to Christ, in all areas of our lives, means that we follow Him even when we don't want to. Satan will try to tempt us with anything to keep us from Jesus. He will use people, things, money, greed, power...ANYTHING. We can be tricked to believing that the blessing is from Jesus if our feet aren't FIRMLY on God. We only learn to decipher the TRUTH when we spend time with God each day. We GROW in Jesus when we read, study, ask, and choose to follow HIM fully.

We must lay down our OLD ways. Lay them down each and EVERY day. We must ask Jesus to give us the strength to NEVER pick that old habit back up. When we do this, when we make the conscious choice to live differently, love differently, stop worrying about what everyone else thinks, and focus all of our life work to glorifying God first...BLESSINGS come.

Many of you may feel that blessings are financial because that is your love language or that is how you see a blessing. But, our idea of a blessing is NOT God's idea.

MY blessings have NOT been financial as of late.

MY blessings have come in lots of tears, BUT also in improvements in Lilah globally, my children's behavior, their trust in me, their confiding in me like never before, their understanding that life is not what we WANT it, but what we make of it.

I feel VERY blessed right now. Even in the thick of a MASSIVE storm.

I choose to smile and laugh each day. I choose to see Jesus in my kids faces. I choose to have FUN. I choose to dance in the rain and allow myself to be who I am...a princess of the King.

Changes can be gifts....if we choose to see them that way.

Lilah's improvements in speech!

I promise I haven't fallen off the face of the earth. Here is an update of how much progress Lilah has made in her speech.


When you watch this and listen to her beautiful voice, didn't you get chills?!

God is SO awesome!

Preschool "Trial"

On Monday and Wednesday of this past week Lilah spent some time in the 3 year old preschool class at Bloomingdale First Baptist. If you will remember, Penny, the director of the preschool told me that the church would love to have her, that they would give her a chance, but that if it didn't work out that we at least tried. She also said that she would even let her come and be a part of the class to see how she did and what she needed to work on to be class ready for September.

Monday Lilah spent about an hour in Ms. Amy's class. She painted, played with the other, "typically functioning" 3/4 year olds, and she loved each minute. Before she left the kids were asking the teacher when she would come back.

Wednesday Lilah had her second trial day. It was their Music Therapy day. Penny thought it would be a great experience for Lilah, and we could see how she interacted in the larger groups.

The Music Therapist was great. She rolled out different colored eggs to the kids that were filled to make noise when you shook them. She would play her guitar and ask the children to shake the egg when she called out a specific color. Lilah LOVED this!

As you can see, Lilah fit right in and bonded with the other children. Actually, the little girl to Lilah's left with the pink bow, clung to her like glue on Monday and Wednesday.
Then the Music teacher allowed each child to play on the bongo drum as they sang the "bye, bye" song.
I might have to invest to get this Music Therapist to come to my home to serve Lilah on a private basis. She was AWESOME!
Penny called me the night before and asked me if I wouldn't mind taking a picture for her when I came, so after the music therapy, we walked over to the sanctuary and I took some photographs for the school. (I cannot share those right now. They are a surprise)

After that Penny asked me if I wanted to try Lilah at snack time. She said they were having peaches. I said, "Lilah will LOVE that."

Here she is at the table with the other children during snack time.
Just one of the girls. LOVING school!
I cannot even begin to tell you how it warmed my heart to see my miracle like this.
Then Ms. Amy said they were going to go on the playground. She invited us to join them. The following images will bring tears to your eyes...even if you aren't a Lilah follower.

As you can tell Lilah has "kinesio tape" on her thighs. It is to help her muscles move more correctly. (I even use it for my plantar fasciitis. Its AWESOME!)


Ok. This right here. This move....
Took MONTHS at therapy to understand, perfect, gain strength, and lose the fear of. Lilah climbed up the stairs over and over ON HER OWN like she had been doing it for YEARS.
NOTHING stopped her.
She had SUCH a good time. Check out how HARD she played. The teachers looked at me when she slid down the slide and was covered in dirt. I said, "I am not mad because of the dirt. I LOVE this! She has worked SO hard to be able to play like this. I LOVE seeing the dirty knees and shoes. THIS is awesome!"
The wet slides, from the rain the previous night, didn't stop her. She was a MESS, but I LOVED it. Even the dirty water dripping from her dress!
Lilah even climbed up and slid down the "BIG" slide that the teachers told me the "normal" 3 year olds are too scared to try at first. Lilah has NO fear. Lilah is fighting and trying and pushing hard in this life.

As I watched Lilah play, was taking pictures happily, watching her LOVE this experience, Penny walked out the door and came over to me.

This is what she said, "I see no reason why she wouldn't shouldn't be in the school. Go ahead and register her for next year." My eyes filled with tears. I immediately stood up, hugged her and thanked her over and over.

They LOVE her. They really, really do. They accept her. They WANT her. They see her potential. They see her incredible desire and fight. They see she is a gift from God just like ALL of us are.
Happy Lilah swinging on the BIG swing all by herself. Happy girl LOVING life. Joyous Lilah...

is going to preschool in September!

Jesus,

Thank you for the silver linings you provide. Thank you for giving me the FIGHT to push hard for your blessing you have trusted in my care. Thank you for Bloomingdale First Baptist loving and accepting Lilah. Thank you that YOU, my Father, have provided such blessings daily for me and my children. I love you.

Katie

Dear Dr. DeVaro,

On November 26, 2008, I met you. I tried to make small talk as you entered my hospital room to exam my newborn daughter.

That morning I was told you were the best in town. That if anyone were to examine Lilah's eyes, you were the one I wanted. I was nervous about the exam, didn't know what we were facing, but trusted the professionals who told me to trust you and that you would take great care of my hours-old baby as you examined her in another room.

The decision you made to examine Lilah on my bed, in the room with me, scared me. I didn't have the strength, nor understanding of what you were about to do to her. I just remember hearing, "Don't watch what he does. Allow him to take her out and bring her back." But, I trusted your decision as the "best" in town as you sat down on my hospital bed and pronged my sweet Lilah's eyes open. Her screams were torturous to a new Mother's ears. I closed my eyes, laid my hands on her and prayed as you rolled her eyes around with what looked to me like dental utensils.

When the exam was over, you stood up and spoke a curse on Lilah, "God didn't make these eyes right." I remember because it has haunted me for 3.5 years.

"God didn't make them right?"

You went on to tell me how my child had Congenital Cornea Opacities and Peters Anomaly. That she would need multiple bi-lateral corneal transplants, that glaucoma would be her biggest worry, that we were "at the beginning of a VERY long road", and at "best she may only get one eye."

As I sat there bawling at your diagnosis, the words that came spewing from your mouth, like vomit to my ears. I never once heard a word of HOPE or encouragement. Never did we hear anything positive, or hopeful. No early intervention therapies were mentioned. Not even a , "Blind children walk, talk, dance, sing, climb Mt. Everest, get married, have children of their own." No, we were given a diagnosis and then that was it.

I even remember watching how you treated our nurse, thinking, "That wasn't even polite."

When you were done giving us the worst news we had even heard, you said, "See you in my office in two weeks."

And that was it.

But, through my weeping I didn't want to believe what you had said. I wanted to cling to some sort of hope. So, a week later as I noticed Lilah squinting in light, we came to see you. We were hopeful that maybe there was some vision forming. Immediately you shot us down and said, "No, this is an early sign of glaucoma, this sensitivity to light" and you prescribed drops to "help control her pressures."

A few weeks later we made our way to Atlanta for Lilah's first Corneal Specialist appointment.

We never saw you again. I couldn't face you. I was so hurt by your words, but more than that...I was hurt because you gave us no HOPE.

Fast forward to today. Lilah is 3. She has had ONE surgery. A Strabismus surgery to correct her right eye muscle. She has never had a corneal transplant. Her left eye has about 90% workable vision with some haze. Her right eye is still slowly clearing more ,and more "red eye" or red reflex shows through each year. Lilah is a miracle. Lilah is HOPE.

Dr. DeVaro,

I have been so angry with you. Hurt by your words, the way you spoke to us, spoke to the hospital staff, treated your very own staff in your building. I have held resentment for the last 3 years over your unkindness and your lack of compassion. I have been angry with you for delivering such harsh news. My actions, my behavior, and my thoughts have not been kind. My hatred toward you goes against everything I believe in. Hearing your name would send cringes down my spine.

I am now asking for your forgiveness.

I am choosing to forgive you for how you treated my child, the curse you laid on her, the way you spoke to me, the lack of compassion and care. I forgive you, Dr. John DeVaro.

I also want to thank you. My grief and sadness turned into major action for Lilah. For many others, as well. I am not your typical Mother. I have learned to fight hard. Because I wasn't given any information on early intervention therapies, Babies Can't Wait, Georgia PINES, Savannah Association of the Blind, O&M, and MUCH more...I have had to learn this on my own. Instead of sitting in that dark corner and crying, I am in full action mode. Lilah is in multiple therapies and has overcome tremendous hurdles. Not all Mom's are like me. I don't say this to brag. I say this as truth. Many Mothers listen only to what the Doctors say and are unaware of what is out there to help their child.

I am grateful that God used you as a tool to break me and teach me to fight like I should have for years.

My hope is that someday, somehow, this letter will get to you. That God will use it as a tool for you. To soften you, to help you speak kinder and gentler to your patients, to treat babies, children, their parents, hospital staff, and your own staff much better. I pray that when it is right, when you are ready, that this letter will be laid in your hands and that God will allow you to see how even through your poor actions and choices, a beautiful blessing has occurred.

I am going to commit to pray for you. With a sincere heart. With compassion. Knowing that you need God in your life. Knowing that as I pray for you, my thoughts have turned from hatred to compassion as I can see a man who needs Jesus just as much as I do.

Katie

Everything is a lesson

So, if you read the last post (scroll down and read 20/20) you might be able to tell that I try to look for ways to "teach Lilah everywhere we go. Today as we were at the playground the slide seemed to have the most perfect echo. I immediately thought, "A H A!" So, I gave Lilah a quick speech lesson...by singing INto the slide. Watch to see how this plays out!


OK, now wasn't that awesome?!

Hearing her say her name so clearly?!

PERFECTION!!

Look around you...everything can be used as therapy :)

20/20...Hindsight that is.

This has been on my heart for a LONG time. I am sure my words will not be perfect, but I feel led to share.

When you are pregnant we all pray for a "healthy" baby. We pray for ten fingers, ten toes, a heart, 2 kidneys, and a functioning brain. These are just a few of the things that we all hope and pray for when we are expecting. Lets' be honest. We all say, "I want a this or I want a that." Rarely, if ever, do you see a Facebook status that says, "God, I am grateful for this pregnancy. Whatever you have in store for my life and this baby, I will trust you. I will be at TOTAL peace with your choice for me and this child." No, we want to have what we consider perfection on this earth.

When the diagnosis comes, during pregnancy, at birth, months or years later there is a period of grief. The grief can range for months to years. Some people even grieve the loss of the child they never had for the life of the child. This grieving process is one I know all too well. I spent so much of the first year of Lilah's life grieving what I had lost. I was sad...a LOT. I was also mad, irritable, frustrated, and really to be honest...I was MAD at God. Heck, lets be really honest, I was mad at just about anyone and anything. I did my best to be "happy" but I was just overwhelmed. I felt so lonely. I tried talking.. daily, hourly, minute-by minute to my husband, friends, and family. But, no one really knew what to say...actually....nothing they said "helped." There was no fixing it, taking it away or managing it. It was real. The pain, the stress, the what-ifs. Oh, the sadness was gut-wrenching.

So many wanted to help. They did their best. I know that... now.

What I wish there was when Lilah was diagnosed was something my family could have read, people they could have talked to...anything to get them to "understand" more. See, I understand now that they WANTED and NEEDED to help. Some wanted to take the pain, the hurt, the emotions, the stress, all of it away.

The words just made me feel less understood. There wasn't a "support group" and my friends and family did not have a child like mine. The words that were spoken didn't feel genuine. They felt like words.

What I know now is that I felt isolated, alone, empty, and I was missing the "blessing" in my home ( THAT made it worse. When people would remind me that she was a blessing and they couldn't believe that I didn't see it. Great! Thanks. That made me feel like MORE of a failure at being her Mom)and I was not the nicest friend, daughter, wife, person to be around.

I was grieving.

The fake it til you make it wasn't working.

Here is what I wish I would have known, done, tried, etc in the EARLY days and months:

• Christian Counseling. So that I could tell a person who wasn't personally involved how I really felt. I got counseling, and still do, but I waited so long. Family, if someone you know has a child who has been diagnosed with a disability, encourage them to seek counseling. Don't be mean or rude about it, or pushy. We have so many emotions to process. We need a Godly person to help us see the true gift and to be able to tell us that it is NORMAL to feel the pain and hurt. Also, if they say no. Understand that the denial is part of the pain and process too.
• Asked for help. Specifically. And took it. I also would love to encourage family and friends to just show up and do.... something, anything. We Mamas want and need to do it all, but we NEED a break.
• Get out of the house weekly. Even for an hour to walk and cry. Friends and family, LEARN the child so that the parent feels 100% comfortable with you taking care of them. My morning 5 Am walks were great, but it wasn't a time away to process as much as I needed.
• Understand- I wish I could have seen past my own junk to understand that not everyone wanted, needed, or could see my view.
• Laugh. Boy, do I wish I would have scheduled monthly girls nights to laugh until it hurt. Laughter is such great medicine. Or as quoted from my all time FAVORITE movie, "Laughter through tears is my favorite emotion."
• Trusted God. Yes, I do realize that this one should have been first in the list, but I placed it last for a reason. This is what I learned to do last. Yep, as a christian this is SO backward. So, in my own thinking, I placed it here last for you to "get it." I remember hating hearing, "God only gives special children to special people." See, I didn't ask, nor did I want to be special. Nor did I ask for my child to be. BUT, her unique, amazing, dynamic, incredible, PERFECT little glorious self has MADE me a better woman. I SO wish I would have learned EARLY on that God really DOES know what is best. EVEN what we think would be the WORST thing to happen to us, really....come on...it really isn't. If I had gotten the counseling, help, breathing room, and TRUSTED God...I might have done things different.

But, I didn't do those things early on...so as God planned it....I am able to share my experiences with you and hopefully help.

To families:

If you are a part of a family that has just been given a gift from God, here is what I would like to share:

• Listen. Without fixing it, wanting or needing to change it. LISTEN.
• Be present. Show up and STAY around.
• HUG. Allow a big fat hug to last for hours if need be. Allow your shirt to be covered in tears, and snot if need be. Just be there.
• Don't give advice unless it is specifically asked for.
• Understand that your family member is going through a tornado of emotions that have NOTHING to do with you. And if those emotions are about you, well...a heartfelt apology is needed :)

Today I have a new perspective. Do I always do this job as Lilah's Mama Bear perfectly? No way. There are moments that there is still a sting, but those stings get less and less intense. Yes, sometimes the evaluations hurt, or seeing other children your child's age do things your child doesn't yet, may never be able to, etc can hurt, but gratefully I know what to do with those emotions. Yes, I pray. I ask God for peace. I ask God to show up. Yes. I actually ask God to show up and tell me how much he loves me and my children. Guess what? If you ask God, He will. It may not be a big BOOM from the sky, but He will send something or someone that is specific JUST to you. Think about it...the perfect song, sunrise, sunset, friend, gift, letter, etc at JUST the right moment....yes...that is God...telling you He is there, He loves you SO much and HE has great things in store for you AND your child.

I am grateful for Lilah. I am grateful for each moment with her...even those that rip me apart. Lilah Hope is my gift. So grateful I see her as this today. I won't regret the moments I missed it. I will look ahead and know I can face each day knowing I have a beautiful blessing in my home who has changed the lives of more people than we could ever know.

With that...I have much Gratitude :)

Who doesn't love to swing?!

If this doesn't brighten your day, bring a smile to your face and give you HOPE that ALL things are possible, then I am just not sure what will!


She has come a LONG way!

Thank you, God, for the JOY I see in her daily, for what you teach me through her, and the light you shine in her.

Thank you for the blessing of Lilah Hope!
I. am. VERY blessed!