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!

Only her 4th time in Karate and LOOK at her GO!

MANY thanks to Carson for all of his patience and willingness.

Would you have thought Lilah would be picking up Karate this fast?

God is really awesome!

I see myself

Watch closely

This child was born completely blind. Today she can see her own reflection in a window. She may not have depth perception, but she can see her beautiful hair, sweet little legs and THAT makes THIS Mama Bear VERY happy!

Perfection

This speaks VOLUMES to me.

Walking to her favorite song, happily, unassisted, fearless...

I serve a GREAT God!