Just a WALKING!

On the way in to church tonight Lilah CRIED and screamed and yelled as she made her FIRST walk into the building. It was one of the hardest 15 minutes of my life. When she made it to the counter at SCC I picked her up, praised her and told her she did it...with tears streaming down my face. I felt horrible.
Should I have pushed her? Was I a bad Mother for making her walk all that way? These thoughts went through my head the entire time at church.

When we made it into service, I was so full of emotion I just wept with the music...

" You make, all things, work together for my good"

And during communion I ave it all to HIM. I told Him how hard this was. I told Him my guilt, pain, shame, remorse, FEARS, and I begged HIM to help me to trust Him.

Then, after worship.... my prayers...were answered....WATCH THIS:

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!

She is REALLY getting it

Today was a day FULL of packing and last minute cleaning and preparing for our VERY first family trip to see my sister, Allison, in New England. The last time we went to see her Alex was 2, Sammie was a baby and Eli and Lilah were not even born yet. Over 6 years!

Today was one of those days SO full...a 3.2 mile run, editing, 2 therapies for Lilah, packing, cleaning, making sure all loose ends are tied up.

Joey, Lilah's GA Pines representative, made SEVERAL comments about how impressed she was that Lilah was REALLY communicating with me. She would sign one of two words, then try to make a sound for the third, or do several combinations of that. I guess being in it, I don't see the improvements as fast as the therapists who see her once or twice a month.

Tonight after a MUCH needed pool break, I was rocking Lilah and reading her a book...then I did my "normal." I prayed with and FOR her and then began to sing the song I made for her when she was just weeks old...

Nothing fancy about this song....nothing rhyming or perfect...just my heart about her...to her(each one of my children has a song that I made up for them and sing nightly before they go to bed...something I started when Alex was in my belly and continued with all of them)

So, I was singing...(set to the lullaby)

"Lilah Bird, Lilah Bird,

how I love my Lilah Bird

My sweet angel

sent from Heaven to me

Lilah Bird, Lilah Bird

you are my girl,

Lilah Bird, Lilah Bird,

You are my world"

So, when I got to the part of "My Sweet Angel" Lilah said.."swee"

No joke....out of the blue, I have NEVER heard those sounds..together...and she did it as I was singing her song....

To me, THAT was God speaking to me...

"Katie, I am here. I am listening. I see how hard you work. I see your tears. I see your pain. I am holding those tears and I am using them. Here is my gift to you. Your daughter singing along with you"

And at THAT moment...I praised HIM...

Our God, is an AWESOME God!

I have been SO blessed!

The Incredible Christine Hall took our family photographs a few months ago. I asked her permission to share some of my favorite images from our session with her.

ALL I wanted was a family picture with 6 faces AND 12 eyes looking at the camera. THIS is not the easiest thing to do with MY family and being behind the lens I KNEW what she was in for with us. I didn't bargain or beg my kids. I didn't stress them out or freak out about their smiles, etc... I told them that Ms. Christine was going to take a few family pictures then we were just going to have FUN...and THAT is what we did. Christine didn't JUST get THE family portrait I have DREAMED of..no, no, no...what she captured of my family was pure perfection!

Do you see that? Not JUST 6 faces and 12 eyes, but SMILES...and at our FAVORITE place...the beach. I see and feel God's presence more at the beach then almost anywhere else. I am not sure if it was the early mornings my Mom would wake me up and we would watch the sunrise when my family would stay at the beach...and I mean the ENTIRE family...aunts, uncles, cousins, etc.

I am not sure if it is because I remember more laughter and peace there...I don't know, but the beach is the place I feel Jesus speak to me.

During our session with Christine, we had about a 5 minute STORM come through, we hid in the lifeguard stand and let it pass, and then the temperature dropped about 15 degrees...it was MAGNIFICENT!!

When the storm passed, we had the most beautiful clouds as our backdrop and I was determined to just play with my kids and be...US!

The portrait below is one of my favorites of ALL time...me and my mini-me!














I have struggled for YEARS with self-doubt, low self-esteem, and insecurity. I normally dislike my portrait taken, I am MUCH more comfortable behind the camera than in front of it. My friends have seen these images, and several have dubbed this one "strength." I don't see that in myself. I have a very hard time with that. But, daily I pray and ask the Lord to show me what HE really thinks of me. My friends have told me that I am so strong and they don't know how I have done all that I have in the past 4.5 years. See, its not me...its Jesus. My road and my path have NOT been easy. I did a bible study that changed my life. Learning that many of my wounds began VERY early... I was about 7 years old, there have been things that have happened that have been constant battles, but God has used those pains and HE is using me for HIS purpose. I am sharing these two images because I am trying to see myself as HE does...and as my friends do.
Christine did an amazing job of not only capturing my MAMA BEAR heart and soul, she made me look...beautiful. Thanks Christine!
The next image is my FAVORITE...look at the contrast between Lilah's eyes and mine!! Look at those blue eyes!

I cannot even begin to thank Christine Hall for what she has done for me and my family. I cannot begin to thank her for not just capturing memories, but giving this Mama something I will cherish for my entire life.

Many people mistake custom photography as just "click the camera." THAT is very wrong thinking. Having a photographer that you trust and love to give you memories is truly an INVESTMENT.

Christine has given my family something that I could NEVER put a price tag on. Her work is truly phenomenal! Her art, her passion, her LOVE shines through in every image. How she LOVED my children, my family...and me.

The BEST part of Christine photographing my family is that she and I now have this budding friendship that is such a blessing to me. You just never know what God is going to do, or what He will do, but when you let go and allow Him to take control.... the most gorgeous things play out.

Christine,

THANK YOU!

From the bottom of my heart. What you have done..... Your vision, your heart, your work, your eye, your passion...your LOVE for my family.... I cannot put into words what you and what you have done mean to me. My heart is SO full. I not only have the most beautiful portraits ever, I have memories, beautiful gifts that fill my home and bring smiles to not only my face, but my heart!

MANY, MANY THANKS!

Katie

Eyes open wide

(HUGE victory for Mama Bear and Lilah, 2 of these signs are on my road near my house)

Last night at church I was talking to Stephanie.( Remember, Stephanie is one of the volunteers that works in Lilah's room) We were talking about Lilah and she began asking me some questions about Lilah's condition. Then she spoke and it was as if God gave me the GREATEST peace.

Stephanie asked me : "Does Lilah not walk yet because of the fear or something else?"

I went on to tell her how 2 of Lilah's previous PTs (physical therapists) kept pushing me and telling me that there MUST be something more than just her visual impairment that makes Lilah like she is. So, we did ALL of these tests, doctors, specialists, and all have come up with NO conclusion and NO answers. Then I told her how Lilah's O&M specialist says Lilah is right on track for visually impaired children. I told Stephanie how there are SO many schools of thought.

And THIS is what she said....


She told me how she believes it is FEAR that prevents Lilah from walking.(EXACTLY what I have been saying ALL along, but no therapist wants to listen) Stephanie told me what she sees and cannot see with her Nystagmus and how she cannot even see the ground. She told me that she is fearful when she goes places because she cannot see what she is walking on...and that "this is the reason I always wear flip flops, even in the snow, so I can feel the ground." She went on to tell me how bright lights will make her almost blind...JUST like Lilah. So much of what she said was like getting the answers I have been seeking for SO long.

Here she is, this beautiful Mother of two, who is legally blind from congenital Nystagmus and she is LOVING on my child...and now me.

I spoke with Stephanie's husband for a few minutes last night. Her husband told me that most people don't take her serious because they know nothing of the condition and they think she is drunk(due to her eyes moving) so they ignore her and don't listen to her or look at her when she speaks. He went on to say how people will think she is lying because she can function so well, but when they look at her, they don't really listen.

I had such an eye opening experience last night.


My 5 minute conversation with Stephanie taught me more about my child than 2 years of therapists. Stephanie HAVING a visual impairment, explaining to me...lovingly how she sees, and listening to me was a BLESSING!

One of the ways I can help Lilah the most is to educate myself and fight and push for her. I have been begging God for someone to talk to...and after over two and a half years of begging, God has delivered a person to me.

God allowed me to be in the valley, alone, so I would look up to Him, ONLY, for my confidence, strength, and HOPE. Once I learned to lean on HIM first, then HE opened the door for me to hear lessons from others who have walked this path.

Again, I didn't get what I wanted, when I wanted, but I received what I needed when the Lord knew I would be open and ready to hear it.

The picture above is of one of the TWO signs that were JUST placed on my street. About 2 months ago, if that, I went to Public Works here locally and spoke with a VERY Godly man about Lilah. With her on my hip, we were told that they would place signs on my street. I didn't expect them SO soon...Two days ago,we got VICTORY!

THANK YOU JESUS!!

He heard me...

Saturday night at church when we were taking communion, and I was talking with God, I got very emotional and really just laid it all down for Him to take. I was so brutally honest with God. I told Him how weak and sad I was that Lilah wasn't talking to me. I just wept in pain. I cried and cried and asked Him why. I told Him how mad and angry I have been with Him. I was so honest. I just poured my heart and my soul to Him. I sat with my head in my lap, wailing in pain. I cried so hard.
I couldn't control it. It was as if I knew I was safe in His arms, in His house, and I could tell Him how HURT I am.
I told Him how I just didn't understand why He has allowed SO much to happen to me in the last 4.5 years. Why He has allowed me to endure such pain and heartache and then He gave me Lilah. I told Him I just didn't understand what I had done to have such constant trials. (I joke with a friend that I sometimes feel like Job)
I laid it all down at His feet. I pleaded and pleaded with Him to hear me. I begged Him to allow me to hear her voice, to talk to her, and her to talk to me. I shared with Him my most deepest desires and wants. I asked Him to take the pain and hurt...and allow me to experience His grace, mercy, and peace. I also asked Him to help me to trust Him because many times I struggle with why He allows such things.


Then last night while we were at my Mom's house, I asked Lilah if she wanted a banana. Lately, she has begun saying, "na na" but last night she said it..."Ba Na Na."

God spoke through Lilah. He answered me. He heard my cries, and even if to some it was the most simple, small, little sound, to me.....it was huge. It was an answer. Not the answer I want and hope for, but it is not on my time, nor on my schedule. I must remember that. The way that the Lord has been working in our family...would NEVER have been on my plan....for those that know me personally and know the pain I have experienced...you know I would NEVER have dreamed or desired it, but God has used each and every painful moment and experience and He has used it for His good.

And this is why I beg Him to help me to trust Him.

And here is a video from this morning of her new sounds...

He is answering me....on His time, but He is listening and He IS answering me

The other night....

Eli asked, "Mommy, when will Lilah be a kid?"


I said,"she IS a kid."

He said, "when will she walk, and talk, and run?"

I said, with a heart full of emotions, "that's why she is in therapies."

With a sad look and disappointed tone, he said, " I know."


So, before I finish the rest of the story and what I said to Eli, I wanted to share a few things.

This life is hard on all of us.

Everyday I wonder if I am spending the right amount of time with the older three, helping them become all they can be and live happily too. Then I wonder how this affects them. As you have just read, it does. Eli, and his older sisters, desire from the deepest places that Lilah will play with them, talk to them, and be with them. They love her so much. They also desire normalcy, which I do my best to provide.

And this is the reason I started this blog. It is a place for my emotions to be released. It is a place for me to tell the truth and share the good days and the bad...and the "how do I handle this." I share it all because I know I am not alone in my emotions. Many of you may not get me, and that is ok. I am not looking for feedback or comments about how I should think, feel, or act. This blog is like my diary, but I am airing my transparency for others who may need it, or for those who have walked on this path and can help, AND for those who have no idea. For those that live life without the stares, the questions, and the hurt. Maybe me sharing will help them look at their own children and stop complaining about how wild they are, or how naughty they are, because their child is acting out or talking back.

I got an email this morning from a friend of one of my sisters who started reading my blog. She has a child with delays, seizures, and low tone. She thanked me for my blog. She thanked me for writing what she feels so often and cannot wrap her head around. She also asked me how do I handle the guilt of one child doing so much, and another will never do those things.
"I'm not the best at putting my thoughts into words, but reading your blog has been so wonderful!!! I have so many swirling emotions (good & bad) & it is hard for anyone to help me get through the bad, but reading your words is like reading my own thoughts sometimes. I have an almost 2 year old son & have struggled with the happiness & excitement I feel of all his milestones mixed with the realization that Taylor will never do those things. How does anyone ever balance that guilt!? Anyway, just wanted you to know that you help to brighten my world. Lilah is BEAUTIFUL!!" THANK YOU, J, for your comment. THANK YOU!!!!

And that is why I share my emotions. Not for people to try to comfort me. I share it because I am real. I do not wear a mask and live behind the," all is good" mentality. I share it because there are absolutely AMAZING days and their are also very real, very bottom-of-the- pit days.
And only those that live in Holland really get it. And for those like me with one foot in Holland, and another in Italy...it is hard too.

You see your children progress and improve at rapid speeds...and you watch your child fight with all of her will to accomplish tasks that are taken so for granted....eating, spoon feeding, walking, talking.

What I wouldn't give to hear Lilah, at 2.5, talk to me and argue with me like most 2 year olds do. What I wouldn't give to hear her voice. What I wouldn't give to remove her fear and watch her walk without assistance. What I wouldn't give to remove the stares and glares from her life.

But, I cannot remove them....

I must "cowboy up" and keep being MAMA BEAR and fight for her....and for me...and for my family.


I told Eli that I know he really wants her to be "normal." I told him that I know he wants her to play. I told him that I know he wants to see his sister succeed. Eli is Lilah's protector. But, he is also a kid who sees and recognizes the "differences" even when we tell him frequently how she was made this way because God wanted her to be like this. That she is perfect. Eli knows.

This life doesn't just affect me, the Mommy, the caretaker. It affects my marriage, my home, my children, day to day....all of it.


I am not complaining. Some may think that I am...and that is ok. Other people's opinions of me are NoNe of my business.

I am telling it like it is....


When Eli asked me that....it broke my heart. I told him what a good parent should say, and I explained all the emotions, and we talked many times about it...when the therapists came, when we went to Backus, etc. I explained that this is why she goes here, works hard, does this, etc. BUT, inside I looked up and asked God Why again. Why her? Why can't she play with her siblings like other kids can? Why can't she fight with them? Play, run, jump, dance, sing, talk, walk?

Then I heard my own voice coming out of my mouth in reply to Eli, " I know. She'll get there buddy."

And I pray she will....

4th of July 2011

Our FUN in pictures!

We will start with the little beauty herself..

Grandma(Aaron's Mom, Geri) and Lilah watching Daddy and Uncle Mike blow "stuff" up!
My sister, Laurie, and her husband, Mike.
Laurie and Sammie
My Mom and Bill
The BEAUTIFUL patriotic bows my friend, Michele, made. (If you are on Facebook fan her at MicMacs Bows! Custom Bows)
Grandma and Lilah blowing bubbles
GaGa(my Mom) having fun with the bubbles she brought for the kids.
The kids having bubble races..
One of my favorite images from the day : )
Sammie and her sparkler..
And here are the pictures I took of the fireworks that Aaron and Mike shot off...



Hope everyone had a VERY safe and happy 4th of July. We sure did!

Just like the older three..

JUST like her sisters and brother, Lilah is trying us at nap time and bedtime. She will get mad, cry, refuse to rest, and then it happens. She will slide on her belly, feet first, turn around and come out of her room crawling with tears in her eyes. And JUST like her sisters and her brother...Mommy will pick her up, kiss her and take her back to her bed.

No special treatment here. No, "oh, but she can't see well" or "poor Lilah, she hasn't learned to walk or talk yet."

Nope.

Lilah is treated JUST like the older three...
and she is JUST as stubborn....
and I am GRATEFUL for these "normal" moments that show me she is human and PERFECTLY made by God himself....

and I am one VERY happy Mommy!

Unfolding

Last night at church, something beautiful happened. You know the type of thing where you are so glad you were present to witness God working? Do you know what I mean? How, if you had been too busy, you would have missed the absolute glorious gift the Lord prepared JUST for you?

Well, this post will not have pictures, so to speak, but it will have a story for you to read. If you will be patient...what I am about to share with you is one of the most beautiful things. At least to me. And isn't that it.... I witnessed the gift He gave to me....


On Saturday nights at SCC, Aaron and I volunteer with 3 & 4 year old children. We have served in that room together for over a year. Last night a parent came up to the counter, and immediately I saw them. I saw Stephanie's beautiful blue eyes move, like Lilah's. She told me that she volunteers in this room after me and really wants to change rooms because her daughter got too upset with her in the room. So, I walked her to Maureen and we talked about what room would be best for her. Then she said it, "I was thinking the 2 year old room." My heart danced.

I heard God speak, "talk to her." so... I did. I said, " oh, you will get to be in the room with my daughter, she is legally blind." Then Stephanie said, "Lilah? My husband volunteers with her and was telling me all about her. I want to be in there with her. I am legally blind, too. I have congenital Nystagmus." I immediately reached out and hugged her. I told her how I loved that she would be in there with her. I told her that I noticed her eyes, and I think they are beautiful.

Here was this beautiful Mother of two, happily wanting to serve the Lord, AND she was going to volunteer in the room with my girl.

My classroom in across the hall from Lilah's. So, I can watch Lilah through the window and see how she is doing while serve.

Last night I saw Stephanie and Lilah talking , playing, coloring, and God was working in them both....and in me. I shared with many of the volunteers what had happened. Many who have known me for years. Many who have watched me on this path, prayed for AND with me. Many who have shed tears right along with me.

I realized last night that the more I study and stay close to God, the more I am able to see these gifts. I am able to witness His story...unfolding one beautiful word after another.

Last night Jesus showed me how He had planned all of this, but I had to wait and be patient. He showed me that if I allow Him to work in me, through me, and Lilah, He would reveal some magnificent wonders for us.

I am so glad I was present last night. I was open, listening, and waiting for God to show up. I pray and ask Him daily to show His face to me.

Last night, when I least expected it...He did.


Through my good days and my horrible days, I have remained ever faithful. Some days I don't understand why. Some days I cry out in agony....but when I keep praying that He will help me to trust Him...sure enough....on HIS time.....He displays wonders that are meant just for me.


Thank you God!!! Thank you!

New Jellies!

I saw them and just couldn't help myself. I wanted her to have something other than her AfO braces. I wanted her to have something normal and pink.

And she LOVES them!!!