"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

Saturday, April 7, 2012

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!

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.

Sunday, April 1, 2012

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.