"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

Tuesday, March 23, 2010

There is something about Lilah

Lilah is so gentle. She is so patient. Loving. Appreciative. A snuggler. Beautiful. My vocabulary for Lilah could go on for days.

I got a wonderful email from Merry. Merry watches Lilah at church on Saturday nights while Aaron and I volunteer and then worship.

Merry told me how much she loves reading this blog, but more importantly how much she loves Lilah.

Merry's words were so sweet...so heartfelt...so compassionate. Something she wrote about Lilah really touched my heart. I was so emotional over what she wrote that I needed to share her "truth" with everyone.

Here are some of the words she wrote:

"Lilah seems so happy and healthy and she is so beautiful. Anyone who is around her for any length of time, even if it is in he nursery on Saturday night, can tell that she is a very special little girl. "

Then she writes something so...PERFECT!

"I love Lilah's eyes..........I think they are the most beautiful color blue. I love to see how she tries to focus on you when you talk to her. Most normal sighted people won't even look at you like that."

Merry, you are absolutely right!

Lilah does take the time to look, understand, try, focus....see you. I am amazed at how a gorgeous 16 month old (16 months today!) will spend more time with you than most people.

I am so amazed by God each day. He knows EXACTLY what to give us.

Lilah is my gift! My love language is Quality Time....and boy oh boy does Lilah give you QUALITY when she spends time with you. She will ponder you, focus intently on you, touch you, giggle with you, but most importantly Lilah really loves genuinely and completely without condition.

To me...Lilah IS unconditional love!

Monday, March 22, 2010

More Calories

Last week at Lilah's well visit we learned that Lilah hasn't gained any weight, nor lengthened in 4 months. Her head circumference has only increased by .5cm.
I was really shocked.
I thought that she must have gotten longer because she has been moving so much more and has thinned out.
I felt like the world's worst Mother.
I just can't win. Last year she was "too big"...now she's not on track. Ugg!
In my attempt to wean Lilah to help her become more independent, and move more, etc. she wasn't gaining and was has been having a hard time adjusting to a sippy cup.
Because Lilah is so tactile, she really loves the closeness and comfort of nursing. But...at almost 16 months, I thought it was time to begin to wean her. Well...we have hit another bump in our road.
So, her pediatrician handed me bags of Pediasure to try to get her more calories and help her enjoy her cup more.
I think she likes it!

Got chocolate milk?

Saturday, March 20, 2010

I have, in a way, been holding back.

I began this blog as a way to express myself honestly, talk about Lilah's condition, vent, pray.

This blog is also a way for me to tell everyone how about Lilah, because SO many people love her and ask daily, "How's Lilah doing?"

I LOVE talking about Lilah's progress. I love sharing Gods goodness...in the best and worst circumstances. BUT....I didn't really think that many people, besides those close to us, were reading it. So, when people put their negative and hurtful two cents in...I began to question myself. I felt as if I didn't have a right to share my true feelings. I felt like I needed to look like it was perfect...INSTEAD of having the courage to persevere with my REAL emotions.

So...I will apologize ONLY to myself and God for not being totally honest the last few months.

I have been afraid. I have been afraid of what people thought. Why? Well...that is another story, for another blog.

This blog IS about Lilah...and me. This blog is about where this journey has taken us, where it will take us, and what we will do for God's glory.

So, here we go...

Last week at church...Bob Russell was the guest pastor and spoke about "How to pray."

After his sermon I realized that I have stopped "really" praying for Lilah's healing. Why?

WOW...the truth?

Being told to accept her as she is, trying to adapt to life as a Mom of a "special needs child", taking care of everyone, watching how hard Lilah works and realizing that she will always be different...and that is ok.

This journey is lonely. Really ...it is. This blog has been the ONLY way I have connected to other Mamas like me. Then...when my intentions were questioned...I was crushed. I AM a pleaser. I try to do what I can, the best I can...alone...never asking for help, then when I take the courage to seek help from other parents of special needs children...like a counselor requested....only to have my intentions questioned. Yep, it broke me. My children are my world. After God, and Aaron, yes...they are. I wonder each day if I am doing enough. I wonder if I am doing the "right" thing. If this is the right thing, the wrong thing, all the while trying to portray that things are "peachy."

No...not exactly...they aren't peachy...THIS is hard. This is beyond hard. Watching your child work, really work, and then seeing other children...those living in Italy, not in Holland like us...master those skills sooooooo easily...wow. It is hard. It is hard to see SO many people take for granted what they have. And to be honest, before Lilah...I probably took for granted....LIFE.

I KNOW Lilah has come a LONG way...SO fast. But....I also know we have a LONG way to go.

Lilah has a new PT/OT schedule. In order for our insurance to pay for the services...she has to have them on the same day. Well, Lilah doesn't have the endurance to do OT and PT back to back. So, I take her to one center in the morning, then drive across town, pick up one child from school, and go to the other center. Read this correctly please...I am not complaining. I am in awe of Lilah. She has done AMAZINGLY well.

I am in awe of her. Each day. Question my intent all you want. But...do it privately and please do not attack me for the world to read...but if you must...know that I will leave your comment for people to read. NOT for them to feel sorry for me. THAT is not what happens. I read those negative comments and I pray for those people. As hard as it is to pray for those who question your motives and don't really know you...I do it. In order for me to follow Christ...I must obey. In that obedience are things that are really hard to do. Praying for people who judge me...praying for people who question me...praying for people who criticise me...praying for people who have hurt me and hurt Lilah...praying for people who understand me...praying for people who don't know Christ...praying for those people that are unaware of the truth...praying for those people who say and do things that leave lasting impacts on peoples hearts....praying for people who do not want to, nor will they ever care to...really get to know Lilah. I pray for those people who are scared of her. Oh yes....we have had it. We actually over heard a Mother reply to her child who was curious about Lilah, "Shhh, come on....don't stare," and pushed her cart quickly passed us.

I cannot make people love, talk, understand or appreciate all Lilah has to offer if they aren't willing to give her a chance. I know that there must be something...fear...that makes them hold back from her. Then there are the people who ask questions, I give answers, and then ask "Why we didn't "fix" it?" I must be very candid for a moment. In my head I am thinking, "Did you really just ask me that? Do I ask you to "fix" your problem, issue, habit, etc?" No, no, no, no...I do not say that aloud...but I am amazed at how cruel people can be. If I tell you Lilah's story and tell you where she was, where she is, where she is going to be someday...please don't look at me with disgust.

At a birthday party recently a young girl began to question Lilah's eyes. She said, "Why are her eyes so crazy?" (yes she used the word "crazy.") I said, "Her eyes are not crazy, they are beautiful." The little girl proceeded, "No, they go like this." As she made an extreme cross-eyed look with her own eyes. I said, "That's how God made her. She doesn't see like you and I , but she's still beautiful." Well...that wasn't good enough. The little girl pressed on..and on...and on. For some reason this little girl was not satisfied that Lilah's eyes were different. That Lilah wasn't "normal." I politely answered and told her once again that, "Lilah doesn't look crazy. She looks beautiful." Little did I know that my friend, Lana, was listening intently to the entire conversation. Lana said, "You handled that with such grace." I smiled and said, "I try."

That is just it. I am trying. I am trying to manage it all, do it all, and be it all so that Lilah will have exactly what she needs. I am trying to reach out to other parents who have found themselves in this and don't know where to go. I don't want to pretend that each day is without hardship, because then I would be lying. I don't want to seem like I have it all together because I don't. I don't want to seem like I am a perfect Mother because I'm not. I make mistakes. BUT...I am doing the best I can.

I will be me. I will not be you. I manage this one way....you manage it another. I will not judge you for how you handle your special needs child...your normal child...your child. Please do not judge how I handle and parent mine. I will tell the truth about the day to day hurdles and joys. I will not shy away from the truth. I am not afraid of the pain. I will not run from it. And....I know I am not alone. I have met many women who have expressed their pain for their child. Many are glad to read that they are not alone. Many are glad to know that someone...somewhere...feels the way they do.

I will continue to pray for Lilah. I will ask for prayers. I will pray that she is healed....if it be the Lord's will. I will pray that the Lord will protect her from those who find it necessary to want to "compare" her. I will pray that Lilah will be strong. Much stronger than I am. I pray that she will find comfort in the Lord and his truth...never believing the lies and hurt of this world. I pray that Lilah will "Put on the Armor of God" everyday. Ephesians 6:11

Wednesday, March 17, 2010

Thursday, March 11, 2010

Babbling Baby Girl Lilah

Want to hear her beautiful voice?

Press the pause button on the play list to your right.

Press play...

and ENJOY!

She is babbling quite a bit these days..

"mamama, dadadada, nanana, bababa"

I just LOVE to hear her "talk."

Friday, March 5, 2010

The older she gets...

The MORE her hair grows.
The more SHE grows...
We MUST make certain adjustments to help her.
Lilah's hair is growing SO fast
it keeps getting stuck in her patch.
THAT would be okay, BUT...when I remove the patch
Hair was coming off with it.

Her hair MUST be up when she is patched!
and if I do say so myself...she looks DARLING!

And if you look closely...

The patching is WORKING!

MUCH straighter eye!!!

**I must give a shout-out to my friend, Jennifer, that I have known since I was 8.
She bought Lilah 100 of the cutest patches from Ortopad.
Thanks Jennifer!**

Thursday, March 4, 2010

Sensory Experiences

When Lilah wakes up in the morning this is what I see..

Then I open the blinds...
and let Lilah experience the light in her room.

She is always so happy when I walk in.
I say, "Good Morning, Lilah."
....and she kicks her legs with excitement

Everything in Lilah's room is there for a sensory purpose.

Lilah has two mirrors in her crib.

One has toys that hang from it that she plays with and shakes.
The other has a lip that she slides her fingers under to feel the fabric...and it plays a little tune.

My favorite thing is to watch her little hands explore.

I want to make sure Lilah gets the most out of her PT, OT and VT.
So...I came up with another idea to practice...
and a little early O&M(orientation and mobility)...
Because Lilah's depth perception is off...
I knew she would have a hard time learning to pull up in her crib.
The slats are spaced apart just so...that she probably feels like she is watching a bad 3D movie where she cannot touch anything...She probably feels like this with most of her experiences.
So...I wanted to give her another clue as to where the top of the railing was...
I attached this:

When I go to get Lilah from her crib, I make a point to tell her where the top is, jingle the bells and pat on the railing.
She LOVES the sound of the bells.
She listens for a few seconds and then...

She reaches for them.

The bells themselves are full of sensory stimulation.
  • red band with Velcro
  • silver bells that are cold and shiny
  • when Lilah pulls hard enough the band will come off and Lilah can play with them

I believe that everything is a learning experience.

My mission is to help Lilah learn and experience this life to the fullest!

Monday, March 1, 2010

A dream for Lilah

This morning Lilah had her evaluation with Sarah from Backus Rehab. Sarah is Lilah's new OT. Lilah will still see Tara, OT for Babies Can't Wait, but she will see Sarah more frequently. (Babies Can't Wait could only see Lilah twice a month. Lilah's PT, Laura, really felt it was necessary to get her more therapy now because she is at such a critical place for growth and development)
As Sarah and her trainee were performing the evaluation she asked me what Goals I would like to see Lilah achieve.
My brain began to race...
  • crawl for longer periods of time
  • pull to stand
  • feed self with spoon
  • walk

and then it really hit me...

last summer Lilah looked like this at the beach:

My goal for Lilah.... is to have her walking by August 1, 2010.
6 months away...
Why that date?
Well....here is the truth...
We live SO close to the beach...well....30 minutes away.
My kids love...LOVE...everything about the beach.
We spend a great deal of our summer days on the beach.
But those aren't the reasons. I would carry Lilah all over the beach. I would hold her and tell her all about the sounds, textures, colors, smells, etc.
But...I know she can do it...
as tactile as she is...
I believe that Lilah would LOVE to feel the sand squish between her toes as she steps. Oh what sensory stimulation she would get from feeling the difference of the hot sand, to the hard sand, to the cool, wet, shell -infested sand.
I think that Lilah would be in heaven. She has ocean music that plays in her room when she sleeps. She kicks her legs as soon as I turn the CD player on. She seems to recognizes the sound as comforting.
I just ADORE Lilah's new OT. She is positive and hopeful and sees great potential in Lilah.
While she was working with Lilah, Sarah said, "She really does have great funtional vision. I am impressed." To which I held back the tears...only to get in the car and sob like a baby. To hear those words from a complete stranger that has NEVER seen or touched Lilah...I just know in my heart...with everything I am...Lilah will do GREAT things...and