Reminding herself..

During Speech Therapy, they will "cue" Lilah on her mouth and face.

Lilah is SO smart that she will cue HERSELF when I make a sound and ask her to repeat it

Someday I will hear that sweet voice.

I pray to hear those sounds more and more.

She is working SO hard and really trying to communicate with us.

Yesterday during her co-treat she made so many new sounds.

I am so proud of her!

Goldilocks

Last night before the storm came in, we were enjoying the breeze that was cooling our 116 degree(with heat index) weather. I thought it was the PERFECT opportunity to capture how LONG and curly her hair is.

God has blessed her with the most gorgeous blonde ringlets to go along with her patient, calm, gentle spirit. She is a true, natural beauty...inside and out.

" Lilah Sharp, No Ma'am!"

It starts out innocent enough. She is happy as can be...

Then she reaches her little hand up and rips that patch off. And THESE are the faces she makes when Mama Bear says, "Lilah Sharp, No Ma'am" as she rips it off....

Little stinker is 2.5 years old and showing her age. She is feisty, determined, strong and fights her Mama...THANK GOD! These little "normal" moments make me very happy that she knows how to turn on the drama. This shows me she has FIGHT. This proves to me that she CAN do all the things that her peers can. She will do them at her time, when she is ready....like most women. hehehehe.

No words

Last night, instead of turning to this blog, praying, etc. I wrote on Facebook asking "why does it still hurt to see, know, face the truth of your child's delays? Will it hurt like this forever? Will I get sad every time, does it get easier, does it ever stop ripping your heart out? I do see the bigger perspective. I know this, but my heart hurts so badly sometimes."

On Facebook you only have a limited amount of space to make your "status." so all of my thoughts...or the most I could wrap my head around couldn't all go in that tiny 420 items spot.

I. Love. My. Child.

Understand this. I am more grateful than anyone could ever realize. I thank God for Lilah...every moment of everyday. Yes, I really do.... with a sincere heart.

But, there are moments that there is pain I cannot figure out why it is there.

Most of the people who responded were people who are in Holland, have been, and can offer some truth. Others who commented on my status obviously love and care for us...and I need and appreciate that, but they have never experienced these emotions for themselves. They do not know what it is like to be in my shoes, in my head, in my emotions.


Let me explain what happened....

Yesterday Aaron found some of my videos of the kids. I watched and giggled and we just had a blast. One was of Alex at 2. It was 6 seconds long and she was telling me that she "farted" and I said calmly, " tooted" and Sahel said, " no, I farted." we all giggled and giggled at her honesty, frankness, and how matter of fact she was.

And then a wave of pain hit me....Lilah is 2.5, doesn't walk like that, and she cannot communicate with me..... I was sad. And then at the same time very angry with myself for feeling this way.

Having spent 6 years in Italy, with 3 amazing children who kept me on my toes and said the darndest things....landing in Holland and spending so much time in therapies trying to help your precious child learn and grow.....uggggggggggg.


I. Want. Lilah. To. Talk. To. Me.

I want to hear her voice, have her ask me things, I want to hear her thoughts and feelings. I want to know what makes her happy, sad, mad, frustrated. I want to laugh at her jokes. I want to have conversations with her. I know that we may have this and we may not. I know that we are having our own conversations in our way right now... but, I still want these things.

I want to see her walk, dance, run, jump, hop. I know, some of you are reading telling me to shut up. But, here it is. Here are the dreams I had for my child. That you had for yours. I had those for all of my children. I got to experience some amazing moments with all of my children.

But, sometimes I feel like landing in Italy first is almost a curse because I am ill-prepared for this journey.

I am a stay at home Mom. I love my job. My job means I place the people in my home above and beyond myself. I place their wants, desires, and needs above mine. I am at their call. I spend most of my day in the kitchen, laundry room, cleaning, and then I spend my time in therapies with Lilah, school functions for the older three, driving, going, never stopping. I get up before my family to run...to run and talk to God and give it to Him. To spend 30 minutes with the Lord, placing it all in His hands.

hmmm, have I really? Why do I keep taking it back? Why do I ask Him to help me trust Him, but then I want to hold it and control it? Why do I feel like this? Am I human? Am I too tired? Am I sad for reasons that I shouldn't be? Am I lonely? In need of friends to understand this pain with me?

I love that people want and try to help me with their sweet words. Sometimes, there are no words. Sometimes this pain, this hurt, these emotions are SO real and no "phrase" makes it better. Try as we all do to make someone feel better with words...that is not what is needed. A hug, without words, to listen, to TRY to feel the pain, to be in it with me, to allow me to feel my feelings. For 2.5 years since Lilah's birth, and surprise diagnosis, there have been so many words...but less and less listening and hugs. No one has really allowed me to feel my emotions. Its been a "she's a gift, you have 3 older children, pull yourself together, you can do this, you are so strong. etc" I have seen more and more people pull away from me in the last year. Why? Am I so hard to love? I don't get invited to things. What this Mom needs is a true friend who will not judge her emotions, who will not tell her HOW to feel, will not think she is crazy for having great moments and really crappy ones, I need a consistent friend who will not leave me when times get tough, I need someone to not look at me like "thank God its not me" and when can I go home because she is too much to handle.

Sometimes there are no words for the emotions, for the pain, for the real feelings. Sometimes I don't want to talk about it. I want to place it here on this blog, where I know I will not be interrupted, lay it on the line, get it out, and TRY to feel better.

Sometimes that is all I need...blog it, cry my eyes out as I type...which I am doing right now, and pray. Sometimes I need to see a face, feel a hug, be allowed to cry without words being said to "make" me feel better. Sometimes...it just hurts and I need to feel it.

Everyone around me is in Italy...and I have 3/4 of me that is.... and that is a hard. Very, very hard. Trying to balance it all, make sure that they are all getting what they need, how they need it, when they need it, etc.

So, I understand why no one gets me. I understand why no one really wants to be around me a lot.

So, I pray and I ask Jesus to comfort me...and sometimes He does right away....and other times He allows me to feel the pain for much longer than I want to feel it...and here is where I am right now. So, without much of a spell check, without much proof reading, I am laying this out there and now, I will get dressed to run, and pray that God shows up and I can hear Him this morning and He will comfort me.

MILESTONE REACHED!

After months and MONTHS of therapy, Lilah reached another milestone. This. is. HUGE!



PRAISE JESUS!!!!

Happy Father's Day

My children are beyond blessed to have a father who wants to spend time with them, play games, dress-up, act crazy, dance, sing, takes them on one-on-one dates, and loves them unconditionally for who they are. Aaron never asks them to be different. He never demands them to push beyond their potential. He is a very present father.

My children are blessed to have a Daddy who has come to know the Lord in a VERY personal way after 15 years as an atheist. Aaron is the first one in the mornings to put the praise music on. He loves to hear Johnny Diaz, The Newsboys, Hillsong United, and more fill our home with worship that will inspire and uplift the family. He prays for and with his children. He serves faithfully at church. He LOVES the children in the room we volunteer in more than anyone would ever know. He takes his role as Division Leader in the classroom VERY seriously. Aaron loves Saturday nights when we serve and worship together at SCC....

This was not always the case. When I met Aaron in 1992, I was entering my freshman year in high school. Aaron never had a LOVE for the Lord back then..it was very much the reverse. So, the first 15 years of our relationship and marriage were some of the toughest times. I was never prepared for all that happened, but....God knew what He was doing because He took our marriage to a place that you make a decision. We decided to fight... and fight hard to save it.

All of that heartache, pain, and frustration wasn't doing us any good. Forgiveness had to come into play. Forgiving for some very, very painful major events, and forgiving each other for the little things that build over the years. This forgiveness led God to bless us with Lilah. One of the greatest gifts we have in our home...


I remember asking God some very hard questions, "Why, after all that I have been through, haven't I suffered enough, why would you allow my child to be born so different, and give her a life full of such pain? God, why would you let this happen? Why Lilah? Why?"

Man, I didn't see it back then. I didn't know that what I was holding in my hands was not only going to bless my marriage, change my perspective, draw me closer to the Lord, but would heal wounds in my heart and my marriage that some would never allow to be healed. All that we went through the first 15 years of our relationship was the road God needed to take us to to prepare our hearts to be the best parents for all of our children, but especially Lilah.

One of the best things that happens in our home several times a day, is when Aaron will enter a room and Lilah will see him and she will start sputtering her lips trying to beat box like her Daddy. The smile on her face....and his.....priceless.

Aaron,
I thank God for you. I thank God for the man you are. I thank HIM for taking us down the road that led us to a much better marriage than we could have ever dreamed. I thank God for the heart you have. I love watching you LOVE the Lord. Watching the passion in your eyes, seeing the change in your heart, and actions...inspires me. I love watching you with our children. I love seeing how the adore you, respond to you, and need you in their lives. I love that your presence and heart is giving them a confidence that no one else can give. I love you very much. I am proud of you. You are an amazing man and a wonderful father. Happy Father's Day.
Always,
Katie

I love you more than you will ever know.

Evaluation... Honesty. Truth. Prayer.

This morning at Backus Lilah was in RARE form. She cried the entire time during PT. I don't know why. I suppose she was having one of those days. Nothing happened any different when we left home. She just didn't want to work. The next hour, after PT, is Lilah's OT/ST co-treat. The last few weeks Lilah has worked VERY, very hard and done a wonderful job.

Today she was re-evaluated for OT.


I told Sarah that Lilah wasn't in the best of moods, but she decided to give it a go anyhow. Lilah was still acting SO mad, so I decided to remove her patch and see if she would cooperate more.


Lilah put blocks into the small opening of the container, and removed some items with one finger...but not many. The tests are little "games" they play..."putting a puzzle piece into the same shape"(i.e. a large square, etc) to see what skills she has learned and knows how to do.


The testing went on and then Sarah scored her "results."


Sarah told me that Lilah was at the 5th percentile for fine motor accuracy with her fingers. Then she told me how much Lilah has improved and how she went from one score to the next. Dana, Lilah's ST at Backus, said that as long as they are improving that is a great sign. Sarah said that Lilah improved by 20%...I think. She said that it was a great success.

I got into the car and had to pray. Really. I started to feel that wave of pain again. That "delay" word just hurts to hear...so bad.

(Ok, before ANYONE judges me for this...please understand...we ALL want the BEST for our children. We want our children to live happy lives, without pain and agony, and we want them to have less trials than we had.)

I started to feel as if she was being judged... AGAIN. I started to feel that deep hurt. I started to get sad again and that question came up again in my heart, "God, why Lilah?" I watch her FIGHT so hard. I watch her work her TAIL off to master skills and I am constantly cheering and coaching her on.

I HATE that feeling. I HATE the feeling that Satan places in me. I know to pray and pray...and I do that, but darn if he doesn't fight me so hard. I have cried twice already today....

WHY do these evaluations HURT so bad? Why do I allow them to pain me? Do they REALLY matter? In the GRAND scheme of this life, AND the next...NO. But, to THIS world, and to the measurements that THIS world places on my child...yes, unfortunately, these "tests" matter. They matter where she will be "placed", what she will be "considered" for and what "services" she will be offered, how others view heretc, etc, etc.

Sometimes living in Holland is REALLY hard.

I am so ashamed of my feelings. I wonder if the problem is really ME. I wonder if I am the ONLY parent feeling this pain OR am I the ONLY one brave enough to tell the truth of this hurt.

Then, as I pray and I BEG God to give me peace...I realize that NO matter what this world says about her..she is perfect in HIS image. Never by this world, where we judge others, ad unfortunately ourselves, on what we look like, talk like, how others "see" us, and worse...what we can "contribute" to society. But, Lilah is perfect..yes PERFECT in HIS eyes...and MINE.

If I stripped away the disability and took away the pain and the heartache and the sorrow and the tears, Lilah wouldn't be LILAH.

Lilah is SO patient.SO kind. SO loving. SO gentle. SO DETERMINED. Lilah has more perseverance than ANYONE I know. I am daily inspired by her. I am inspired to be a better me. To be a better ...everything.

So, yes...I am hurting right now. The pain is REAL. The emotions are genuine...and I am sharing them with you because I believe that somehow it will bring me closer to God by asking you to pray for me...and it will help you all to see the truth...sometimes Holland is hard, but most times it is a wonderful place that has opened the eyes of my heart to a closer walk with Christ.

I am by NO means perfect. I make more mistakes than I care to admit. BUT, I am trying EACH day to learn how to be a better Mom and a better advocate and a better citizen in Holland while I wait for my place in eternity.

I may fail, but I am determined to never give up HOPE.....even in the midst of tears.

The Eyes of my children

Obviously with Lilah's eye conditions I am VERY into eyes. I spend a great deal of time looking into the eyes of almost everyone I meet.

I decided to give you a glimpse of the beautiful eyes of ALL of my children.


First, Alex's gorgeous brown eyes. This beauty has the heart of GOLD. She thinks of others and loves so deep and so pure. Her laughter will send you into immediate giggles! Out of 4 children, thank goodness I have one that look just like her Mama.

Next, my Sassy little Sammie. Spunky, outgoing and fun...this one keeps me on my toes. She is incredibly smart and yes, you can see the "fun" in her eyes. (or the careful, I am mischievous. hehehehe)

Next are Eli's handsome eyes. So full of wonder, and interest. My little man is ALL boy! What a sweet soul he is. Always caring and protecting his sisters, but especially Lilah. Even though they both wear floaties in the pool, he still finds Lilah and says, "let me help you."

And without further delay, here is a picture from just a few minutes ago that I took of Lilah's eyes.

Do you see the clarity?
Do you see how BLUE they are?

Do you remember how WHITE they were?

Yes, there is some cloudiness, and if you look closely you can see how her eyes don't sparkle exactly like her older siblings. But, what you can see is the miracle in her.

There is NO denying God, His awesome power, and strength when you look in Lilah's eyes.

Remember, Lilah was BLIND at birth. Remember, Dr.D said she would need MULTIPLE corneal transplants and she would still be blind due to glaucoma. Remember that Lilah has NEVER had a surgery on her eyes. Remember that there really is NO explanation for how FAST her eyes have cleared. One of my strongest memories was when we went back to see Dr. Lee 8 days after starting the drops and he said, "I have never seen a child's eyes clear this fast." Remember, our God heals. Our God saves. Even in the midst of DAILY pain...I look for HIM as much as I can.

Yes, this is me admitting that I either cry daily, or want to, for things that have happened to my child, BUT...

The song Blessings by Laura Story really puts it into perspective for me...

"What if your blessings come from raindrops

what if your healing comes through tears

what if a thousand sleepless nights are what it takes to know Your near

What if the trials of this life are Your mercies in disguise"

Click HERE to hear it. Guarantee you will cry...and you WILL feel Him and feel better. I sure do!

A little story from today..

Before I went on my run this morning, the laundry called...the normal 2 loads per day was now at 4..and I knew what would happen if I didn't attack some of it early on. So, I left later than I had hoped to leave, but was still able to get the 4 miles in. (I get more and more nervous as the weeks go by, and the weekend miles add up, as I train for my first full, 26.2 mile, marathon)

I quickly showered when I came home, got the kids in the car, and we made our way to Aaron's work. Got his pay stub then went to the SS office for Lilah's review. Honestly, I am VERY glad I had an appointment and it wasn't as painful as I was expecting...and the kids...YES, all 4, were really good.

So, I loaded the kids back in the car and proceeded back home where Tara, Lilah's OT with BCW(Babies Can't Wait) came a few minutes later.

I decided to show Tara the videos of Lilah in the pool(check out the posts below) She said, "WOW!" Then she told me to keep it up and how she thought the pool was an incredible dorm of therapy for everyone, but especially Lilah.

It was getting close to lunch time, and I could tell Lilah was fading some, so I asked Tara, as Lilah crawled to the kitchen, if I could go ahead and give her some lunch and she could work on spoon feeding with her. Well, Lilah took the spoon and fed herself the cottage cheese and Tara said, "look at you!"

Now, Lilah isn't perfect with it, but she is doing it. She is doing the best she can to place the spoon as near to the bowl, or in the bowl, as she can. She did such a great job!

Tara told me how "INCREDIBLY impressed" she was with Lilah. She said, "every time I come, she is always doing something new."

This Mama Bear is very proud of her little girl!

So, as the younger two nap and the older two are calling my name...we will be getting ready for our pool trip today...

Might as well use it...let the older three play and have fun...and Lilah does her own therapy and loves it.

Please keep praying for her. Your prayers ARE working and she IS improving a little more each day. Please continue to pray for her eyes. The patching is working( at least I believe so)

Thank you SO much!

Look how GREAT she is doing...

7 days ago I decided toput Lilah in the "little" pool and see what she could do "alone." I say that word with the understanding that I was right there to jump in that 1.5 foot water and get her if need be. In 7 days she went from a bob of a stand to now trying to walk in the water with her feet. I do believe a miracle is happening right in front of our eyes...and YES, I am documenting the ENTIRE thing. Oh, and on this video you will see the smiling faces of the older three as well. ENJOY!!

Lilah STANDING in the pool

I have been telling everybody about her standing in the pool, how she acts, what she does, and I decided you REALLY needed to see it LIVE action to understand how AWESOME our God is, and how HARD she has worked. I do believe you will LOVE this. I, certainly, do!..ENJOY!

So much to tell...

I don't even know where to start with this one. Ha, honesty. Did you expect anything less from me?

A few months ago the talk of PSI( pre-school intervention) came up at Lilah's therapies. As of November Lilah will no longer be treated by Babies Can't Wait.(The early intervention program) On her third birthday, this November, Lilah will age out of BCW, and she will enter the PSI system.
I have been very fearful of this because I have heard horror stories of the IEP(Individualized Education Plan) meetings here in my county. I know that there can be some that are wonderful, but the ones I have heard about seem like the Mother alone staring down the death squad. I was, quite honestly, VERY nervous.

Today Lilah had her introduction to PSI meeting.

Aaron came! YAY! His first meeting! It was great for him to be a part of this. I didn't feel so alone. I didn't feel so intimidated. And He got to sit in and understand what all I am talking about( poor guy looked a little overwhelmed when we were done)
When we got there, Dawn, Lilah's BCW coordinator, was out front and walked us back to meet Catherine, Lilah's PSI Liaison. (But before that, we went to the school nurse and they tested Lilah's hearing...perfect.) Catherine was so sweet and easy to get along with.
We talked about Lilah's therapies now, what we hope that she will have, what she will need, and then we talked about her Doctors. Well, the topic of Dr. D came up. Catherine said it was the 2ND time in one day that she had heard how mean he is to his patients. I told her the entire story start to finish of Lilah's encounters with him, specifically what happened to us in the hospital...and her eyes filled with tears. She said, "Someone needs to do something about him. That makes me so sad." ( But, I said those words, without crying, without tears, and I was strong)
I smiled a LOT through the meeting. Told of Lilah's successes, and talked about how even though she is delayed, she is hitting those milestones, even if it is a year behind those her "age" and where I would really like to see her. I also asked for the continuation of "many therapies" because it is obvious the "sponge has been soaking and is now understanding."


Here is what I mean by that...

Just yesterday, ALONE, Lilah said ,"na, na, na, na" without prompting as I put bananas into the grocery cart. Then I got the girls early from school after Alex's awards program( GO Alex! Honor Roll for the entire 2ND grade year! That's my girl!!) and we went to the pool. At the pool, which Lilah LOVES, we swam, Lilah blew bubbles, she made the sound, "k, k, k" for kick when I asked her to kick. Then, I carried her to the baby pool(1.5 foot deep) I decided to let her "swim" alone with her swimmers on. (I was right there, but I wanted to give her freedom to see what she might do, without being attached to me) Lilah shocked us all. She was bobbing in the water, then all of a sudden out of no where, WITHOUT holding on....she STOOD! Yes, you read those words correct. NOT a typo. Lilah Hope Sharp stood ALONE!!!!
I was shocked. I was screaming. I sat there in AWE of my child. What? My mind raced. REALLY?!? God, really!?! Did that just happen???
And then she did it again, and again, and AGAIN. My friend, Marci, came from SC to visit and she saw the entire thing too. Alex, Sammie, and Eli were cheering. It was INCREDIBLE.
I looked over at Marci and said, "I know where I am coming EVERY day this summer."

I just cannot put into words my thoughts and emotions right now. Seriously, I am beside myself with joy. My HOPE has always been that Lilah would be a HAPPY, healthy, independent child. My HOPE has always remained constant that God would heal her, guide her, heal ME, help ME to understand that even though I didn't pick this path for my child, for my family, for my life...it has been the BIGGEST blessing. I don't just see things happen with my kids and say, "oh, that is great." NO, Lilah has blessed me by pushing more of the me than I ever thought I could be. I am present. I am there!! I don't take ANYTHING for granted. I SCREAM with JOY when they ALL(4)do things that I am proud of. I stand up for them. I fight for them. I support them. I never let a moment go by without thanking God for placing them in my care. He chose me. He chose me to watch these gifts. He chose me to ADVOCATE for Lilah. And in the moments(this morning even) when I am WEAK and fearful and scared and worried...I place my faith, my trust, my HOPE and my assurance in HIM...and I am grateful.

Wow, God is so, VERY good!

and all God's people said," AMEN!"

We can't do it without you

We rely on Him, alone.

a BIG girl bed

The time had come. She is climbing, exploring, and becoming more daring. I was so scared she was going to try one of her climbing acts in the middle of the night and fall flat on her face out of the crib. Yes, I could have gotten a crib tent. I could have kept her in her crib forever, but she was ready.
So, last Thursday afternoon, after telling her therapists what I wanted to do, they agreed she was ready...Lilah got a new bed.
We don't do "toddler" beds in our family. We see them as a waste of money. We just buy a twin, place the mattress and box spring on the floor, use a guard rail, lay pillows down in case of a roll out and there you have it.
For Lilah we made one exception. Lilah has a gate at her door, which she can open, but I can hear the CLING if she opens it in the middle of the night.

Lilah LOVES her new bed.

So much so that when we went to the store to get it( the local Sam's) she kept repeating, "be, be" her version of "bed, bed" over and over again. If we mention her bed now, we get an immediate, "be, be" she adores her bed. She feels free.

Yes, Lilah knows how to climb in AND out of it. We have taught her to roll to her tummy and slide "hiney first" on her belly so her feet will touch the floor first and she can turn around from there.

I watched her after a few days and noticed something....


She would crawl up on her bed and try to touch the dot she has been looking at for months.

Then she did it....she stood straight up and touched that dot.

Look at how strong, powerful, beautiful, and perfect she is. THIS image shows how FAR she has come.

Thank you God for this journey...and all it has taught me.