A place

While the kids were on Spring Break, Lilah had her OT evaluation and it was hard on me. I won't lie....it was hard to hear "how" delayed she is.


Aaron had already scheduled to have Wednesday through Friday off during their Spring Break, but he knew we needed a getaway with the kids to be far from the "normalcy" of life in Holland. He made a few phone calls and found a VERY nice house ON the beach in St. Augustine, FL. As God orchestrated it, it was the "only" house available and because it didn't rent during the "weekday" portion of Spring Break we got a phenomenal deal on it. Aaron kept telling me that it would be OK, we needed to get away from all of the day to day with the kids and sit on the beach with them and just be.

I am the worrier. (Did you already figure that out?) I worry that we cannot afford it, we will need the money when another storm hits, because in life, they happen, and to us...they happen often.
But he said, "you love the beach, and what better way to really love it then to stay at a house right on the beach?" After much convincing, and him just saying, "I'm doing it" we went.


I felt closer to God in those few days than I have in a long time. I see God at the beach. Its almost as if I can touch His face and feel Him holding me. I got up before everyone each morning and ran over 4 miles each morning at sunrise, with my praise and worship music. One morning I asked the Lord to tell me how He felt about me before I started my run. I asked Him to show me His face. That particular morning the breeze was perfect, the sunrise was FULL of color, I ran by a man playing catch with his 3-legged lab in the surf, and three teenaged boys whistled at me twice. To me, God showed up and out...in just a way that I needed. To hear the whistles, it was like God was saying, "yep, you are beautiful" (which I NEVER believe ) and to see the sunrise, He was showing me His beauty that He created for me. But what moved me to tears more than anything was the man playing with his disabled dog. That dog...happily played, tail wagging, in the surf, and he didn't have a care in the world. That dog didn't know he was "different", he just knew he was happy. I ran up to the man and told him about Lilah and how watching him with his dog was one of the most beautiful things I had ever seen. I ran past them on my 2 miles in, then past them again on my 2 miles out. It was just breathtaking. Both times. Tears filled my eyes...and I could hardly see, but I kept on. I wanted to run forever that morning. Running is my therapy and my time with God. Never thought I would say that, but I need it and it was perfect to run and see what I did.

Lilah had MORE fun at the beach this time than I have EVER seen before.

No one was on the beach. I mean...no one. It was like an empty, private beach, just for us. She played more, interacted, and crawled all over the sand and in the water.

I saw more from her in those three days than I have ...ever.

She loved the beach chair. Little stinker would climb up in the chair and turn around and sit down and just giggle and laugh and sing. She was so proud of herself. She knew she had accomplished some mighty things and she was just, plain......happy!

The sunrise and sunset at the beach was just....breathtaking. I had to share a picture of the sunset from the front of the house.

OK, so back to Lilah....

Watching her on the beach I saw her roll around in the sand and really enjoy the textures and sounds without hearing TONS of people.

When she crawled, she would just GO. No person or thing to "bump" into. It was freedom. Look at that form...
She was happy. Really. Really. Really........HAPPY!

This picture was not edited....just look...No one for miles. No one to stop on the beach and STARE at her. No questions about her face, her eyes, her feet, why she doesn't walk....it was peaceful and it was FREEDOM!

Even Aaron, a VERY non-beach person, LOVED it. He loved watching his family happy. He loved each moment...

The kids were happy. We were happy. Lilah was happy. She could tell we were relaxed and we were at peace. To play with my kids without worry, stress, or having to stop and answer questions or run into someone we knew. Of course, she was her normal snugly self and I got LOTS of Lilah love....and I loved that!

And then we had to leave.... : (

No one wanted to go. We wanted to stay...forever.

I know why. Life in Holland can be VERY hard. VERY. We came home to Easter services to serve and worship at church. As beautiful as it was, once again, when our family picture was taken, we were reminded of how "different" our family is. Lilah doesn't look at the camera. She takes WORK to look. Most people don't have the patience for her. Hence the reason our only family picture is where I set the tri-pod up and tickled her and the older three had to hold their smiles....many shots...and finally 6 faces. I am not picky...just want 6 faces. Smiles would be great, but what I want on my wall is a gorgeous BIG picture where you see 6 faces where I didn't have to get up 2500 times to adjust the camera to get one shot.

Our life is different. We came home to responsibilities, insurance papers, medicaid, SSI, therapies, AFOs, patches, stares from strangers...

It can be a very lonely life.

Its hard because I have 3/4 of me in Italy, and the other 1/4 in Holland. But most days I feel like it is reverse....3/4 in Holland and 1/4 in Italy. Holland can be very consuming.

Today was Lilah's first day of back to back PT, OT, and ST at Backus. And she did great. She really did. But, near the end during her co-treat with Sarah(OT) and Dana(ST), I felt that sting begin to happen. They were trying to get Lilah to vocalize something, anything, all while swinging her on a swing, playing with toys...a dual session. What hit me, like a TON of bricks, was that this IS work for her. HARD work. I mean, like when I ran the half marathon(13.1 miles) and my legs ached at mile 11 and I wanted to give up, but I didn't...work. THIS is how HARD she works....EVERY week. EVERY day. Life is NOT easy for her. She FIGHTS. I am so proud of her. I just cannot believe how much she works, how hard. Then, I see my "friends" who have "normal" toddlers. And they just "do" things. No work, no effort, no fussing, no crying, no moaning out of pain and fear...they just "do" it.

This week it was my turn to "serve" in Moppets(the area where our children stay in MOPS). The volunteer hadn't showed up in Lilah's room, so she was with me...and I was in the room with 7 other 2 year olds....who were talking, dancing, running, laughing, giggling, throwing balls, asking me to read books, etc. I was happily serving for the Lord and for those women that needed time away from their children, BUT...it was hard. HARD to be around children the same age as Lilah doing SO much more. HARD to hold her on one hip and dance and play with them while she doesn't "get" it.

I am NOT complaining about my life. I am not complaining about Lilah. I am surrounded by the "differences" and it makes me want to scream. Doesn't anyone see that THIS is difficult? Doesn't God know I am hurting? Why does He keep using me, and her? Why can't she be normal and He use someone else? Why do we have to be the ones to "lead" others? Why does He think I am so strong? I am not!! I am weak. I am in pain. I hate to see my child isolated like she is. I hate to be ignored by other Moms because they just don't know what to say to me. I hate to feel THIS way!

Why do I feel this way? Is there something wrong with me?

I want to go back to that beach, that house, and be away from the pain...I just want to love my husband and my kids and not have to face how the world views my girl. I know God is listening to me. I know He hears me. I know He understands. I know He wants me to keep doing what I am doing....and I will, but right now...at this very second...my brain is mush and I overwhelmed.