Tough Questions

Whenever we are out with Ruby, people give our family a second look. They aren't being rude; I think they are just curious to know about her story. Sometimes I think people that I have just met avoid asking me about Ruby because they don't want to be rude.  I don't think asking about her is rude at all, in fact, ignoring her or the situation might be more rude.  I don't mind talking about her; in fact, I welcome questions, especially if they are phrased in a gracious, compassionate way.

Usually, adults will just give us a sympathetic smile and nod, but kids are not quite as subtle. I have had several kids this summer come right up to me and say, "What is wrong with her?" Even though I know kids mean nothing by this question, and I like sharing our story, it still stings a little every time and I am always at a loss for words as how to answer this question when I am talking to a child.

Several different responses have gone through my mind...

....she was born this way...
....she has an ouwie (sp?) on her brain...
....God has a special plan for her...
...her legs don't work...
...she likes to be pushed around in this chair...
...she can't walk and run like you, but she loves to giggle when you tickle her...

They all seem like cheesy answers, yet they have to be simple enough for a child to understand. Although these bold questions from kids are not always easy to answer, I do love how most kids respond.  Usually after they hear my response they shrug their shoulders and go on to touch her face, talk to her or tickle her arms. Kid are less inhibited by her special needs then some adults.  Just last night several neighborhood kids were fighting over who got to push Ruby around the cul-de-sac in her wheelchair; this acceptance warms my heart.

I'm not sure how to wrap these thoughts up tonight...

I love to talk about Ruby and I hope her story will touch others and give glory to God.  Please don't be afraid to ask me about her.

Even so, sometimes I am sad that my daughter needs explaining.

Zeeland Christian

School started this week! I teach K-2 music at Zeeland Christian two days a week. This is my third year in this position and I really love it. It allows me to feel like a professional for a couple days and it gives us money to help with therapy and care for Ruby. Emily watches Charlie and Tabatha while I teach and Ruby is at school. She does fun things with them and they love being with her so it is a good set up for all of us. I think I am a better mom when I can step away twice a week.

God's timing is good. This job opened up right when I was going crazy being at home with Ruby and Charlie. Don't get me wrong; I LOVE my children, but Ruby was not a content baby. Between her seizures, meds and therapies and Charlie's surgery and hospital stays, I was losing it.  This job gave me an out and allowed me to step outside of my situation a couple times a week. It was therapeutic for me.

Zeeland Christian is an incredible place to work and I am so glad that Charlie will be going to
three-school here this year! He starts the week of Sept. 10 and he is so excited. Crazy that my little man is old enough for school already, but I am happy he is so excited about going.

Rolling Over

I threw away the milestone chart a long time ago, but last week I needed it back because Ruby finally met a milestone. She rolled over!! We have worked with her for four years and I honestly wasn't sure if I would ever see her roll over. Last week she surprised us and when she was stretching on the floor in the morning, she popped onto her stomach from her back.  She ended up with an arm stuck under her and she looked a little confused, but we will take it! I hope she does it over and over again.

Ruby's new strength and stability is due to the ABR therapy we do. Emily does around 10 hours a week and we try to get a few hours in on the weekends.  It has been an expensive, long and slow process, but it is the only therapy Ruby's body has responded to and we are thrilled with the permanent changes we see! We feel confident we will keep seeing these changes as we do more therapy. ABR is the best therapy for kids with brain injury or cerebral palsy because it focuses on changing the structure of the body. Once the body is more "normalized" then functional changes can occur.

Thanks, Emily, for the endless hours you have put in doing ABR on  Ruby!! These changes we see wouldn't be possible without all your work!

MIKESCHAIR

Saturday night we had the privilege of hearing MIKESCHAIR in concert at the Unity Christian Music Festival in Muskegon.  My brother Kyle, plays guitar for MIKESCHAIR and I was so proud of him! It was crazy to see my baby brother on stage, performing in front of thousands of people and even weirder to see him signing autographs after the show!

On Friday night we spent an hour over dessert getting to know the guys from MIKESCHAIR. What I appreciate about them is their authenticity. The lyrics of their songs reflect their hearts.  The band is made up of young men who truly desire to impact people for Christ through their music. 

If you don't know much about this band, check them out here, or on facebook or on itunes. 

Quinn

My brother Kyle

Mike

Ruby Smiles

Sometimes a picture says it all....

I LOVE this little girl!!

Feeding Tube Drama

Tabatha has been obsessed with Ruby's feeding tube button for awhile now. When Ruby is laying on the floor,  Tabby will wobble over to her, lift up her shirt and dig for the plastic end of the tube. When Ruby is being fed, Tabatha will grab at the tube.  She has been determined to get at that g-tube.

The feeding tube

I told everyone in our house to watch Tabatha and make sure she doesn't pull on that tube. I gave strict instructions to Charlie to yell if Tabby is ever grabbing at the tube. I told Emily to make sure Tabatha doesn't lift up Ruby's shirt. I was afraid she was going to yank that tube right out!

Yesterday that happened....on my watch!

The Culprit

Yesterday Ruby and Tabatha were on the living room floor, giggling. I walked 15 feet to the kitchen to start dinner. I checked back about two minutes later and I was shocked to see a little blood on Ruby's shirt. I started to panic as I looked around, and then I saw it: Ruby's g-tube laying on the ground. Tabatha had already fled the scene.

 The Giggling Victim

I ran into the kitchen to search for her replacement tube and I was frantically trying to remember what the surgeon told me to do if this ever happens. Funny how it seems so easy when you are sitting in the doctor's office getting those instructions; actually having to do it is a different story.  I found the back up tube in Ruby's wheelchair bag. I grabbed a syringe, filled it up with 4 mls of water, popped the little tube in, filled the small balloon with water (this holds the tube in her stomach) and we were good to go.    I was still tingling with adreneline and Ruby was kicking around on the ground smiling. The whole thing didn't seem to bother her one bit! You would think having that tube and small balloon yanked out a hole in your stomach would hurt a little!

All is well that ends well. Ruby needed her tube changed this month anyways, she didn't seem to be upset by the whole deal and Tabatha just went about her business as usual.

I will be keeping a closer watch on Tabby's little hands though.

Never a dull moment :)

Family Day

What a great family day....the zoo, a picnic in a park, the beach, pizza and ice cream....all with people I love.  I am tired, but I feel thankful and blessed.

Uncle Kris and Uncle Kyle

The Gang (my parents were taking the photos)

Cheezy smile with Kyle

Kris and Inara checking out the monkeys

A camel ride

Some love from Uncle Kris

Holland State Park- A great day for swimming and building sand castles

Cousins