What Could Have Been

It's been a flurry of activity at our house lately. We are in full summer mode. Recently the kids enjoyed a neighborhood picnic, swimming, playdates, a birthday party, ice cream, time at the beach...etc. Charlie and Tabatha had an amazing time at vacation Bible school. It feels like summer and we are loving it. It's been a great couple of weeks.

This afternoon, when the other kids were napping or resting, I went and laid by Ruby in her bed. She seemed content to listen to music with her therapy machine on. She smiled at me snuggling by her. 

Then, unexpectedly, my tears came. Grief often sneaks up on me like that. Usually I don't let myself think of what could have been, but today I couldn't stop myself. I got caught up in dreaming what it would look like to have Ruby participate in all those activities we have been a part of this week. 

I want to run with her at the park. I want to watch her praising Jesus at VBS. I want to see her swim in Lake Michigan. I want to watch her play with neighbor friends or jump on the trampoline. I long to have her look at me and tell me that she loves me.

Sometimes I miss the Ruby I thought we were going to have. I miss the Ruby that could have been. 

"When my world is shaking, heaven stands. When my heart is breaking, I never leave your hands....Your hands that shaped the world, hold me still"

--JJ Heller (Your Hands)

Vacation Without Ruby

Last week we spent five days with Mark's family in the Wisconsin Dells and we left Ruby at home with Emily (Ruby's main caregiver). It's weird to go on a family vacation without your whole family.  I felt a little guilty for being excited about leaving one of my children behind. I love Ruby dearly and I would do anything for her, but five days without seizure meds, feeding pumps, equipment, formula, diapers...etc sounded amazing.

And it was. Leaving Ruby behind gave me the chance to spend quality time with each of my other family members. I got to swim with/chase after Mona in the kiddie pool. I witnessed Tabatha's giggles as she went down a big water slide all by herself. I sipped fruit smoothies in the sun with Charlie while he explained to me his latest Star Wars Lego creation in great detail. Mark and I were able to relax together, at least while Mona was napping :)

And guess what, Ruby did great at home! She loved seeing her teachers at school and she thrived on the attention she got from Emily. Keeping her in her normal routine is good for her. 

Stepping out of our normal routine was good for the rest of us.

Special needs mamas--give yourself permission to step away from your special kiddos once in a while!! I know they need you like crazy but they especially need you to be well and whole and sane. If you don't take care of yourself, everything suffers. This is incredibly hard, I understand. But make it a priority. Let people help you. Get a massage once in a while. Go out for coffee with your husband. Do something for yourself. Trust me, you will not regret it!

We were all excited to see Ruby when we got back. 

I think a little absence once in awhile does make the heart grow fonder.

 

ABR Training in Toronto

This past week, Emily (Ruby's wonderful caregiver), Ruby, and I traveled to Toronto for some more ABR training.

I was anxious about the trip because Mark was not going with us this time. He is always the navigator and I was little nervous about having to do that myself in a strange city. I'm thankful Emily was along to help!

The map program on my phone didn't work because I didn't have full data service in Canada. With a couple of wrong turns and a few phone calls to Mark to check directions for us, we made it there.

Due to her cerebral palsy, both of Ruby's hips are currently out of socket. I was concerned about this and I was interested in seeing how ABR would respond to her hips. We have already met with an orthopedic surgeon about this issue. He does not believe Ruby would be a good surgical candidate. We were glad to hear this, because we do not want to pursue extensive hip surgery.

ABR also believes hip surgery is not necessary at all in Ruby's case. They assured us not to panic about her x-rays. They also believe she's not in pain right now and if she has pain we can control the pain with new ABR exercises. 

So, we did get a few exercises working on her hips, but most of her exercises continue to target her core. Head control is still a goal for us. Little by little we are changing her structure to give her more function. We believe this therapy is the best option for Ruby.

Through our evaluation this time, we saw that Ruby's body is more properly segmented, meaning it's not acting like one large block which happens from brain damage. We continue to work to separate each part. She has more space in the back of her neck (brain damage causes everything to be compressed), her shoulder blades are much more stable and continue to normalize. These may seem like small things, but all these little steps are necessary to give Ruby or function.

A few pictures...

Here's Emily working with Ruby's hips using a new tool in an orthopedic tapping method. This tapping helps the fascia (connective tissue) to properly connect to the bone which is crucial for stability of the joint. 

Chillin' at the hotel

I continue to believe that ABR is slowly normalizing Ruby's structure. It's the only therapy we found that has touched her CP. I am encouraged that we are making progress. I wish it was faster, but I believe Ruby would be in a much worse place if we had not done years of ABR therapy with her. I am thankful this is an option for us. Thanks for your prayers. We will keep working! 

 

 

 

 

Ruby's Account

It always feels a little awkward taking about money. To be honest I debated a lot about whether or not I should write this post, but here it goes...

After the Spartan show aired last week, we were approached by a couple of different people who desired to help and asked if we have an account set up to meet Ruby's needs. At the time we didn't have anything set up for people to help us in this way. This caused Mark and I to start talking about if we should change that or not.

Ruby is an expensive little girl. In order to pay for diapers, extra equipment, respite care and therapy we need to set aside thousands of dollars every month. That being said, God has provided for us. Through support of family members we were able to build a house that is set up for her. We were also gifted a used wheelchair van that works for our family. We are very grateful for these things.

Yet, Ruby's needs will not stop. As she grows there is more equipment to think about. As our other kids gets older and become involved in activities we will need to pay for care for her on nights and weekends. Our van is old and will need to be replaced in a couple of years. She will never be potty trained so we will always have the cost of diapers. We believe she will benefit from ABR therapy for the rest of her life and this is an out of pocket expense. The list could go on....

After thinking about all of these expenses and realizing some people wanted to help, we decided it would be appropriate to put a paypal button on our blog. This makes it possible to donate for Ruby's future care if you feel so led.

Thank you to the many of you who have support in many different ways  her in the past. We are humbled by the encouragement, support and prayers we continue to receive from people. God is an amazing God and we are thrilled to watch Him use Ruby to touch others.

"Strength for today and bright hope for tomorrow"

If you are viewing this blog with your smartphone you will have to click "view web version" at the bottom of your page in order to see the pay pal button. It should show up right away on your computer. 

Joy and Peace

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13

I've been chewing on this verse lately and as I read it again a couple of things hit me:

1) My God is a God of hope!

2) God can FILL us with peace and joy

3) He fills us as we trust in Him.

How often am I missing out on His peace and joy because I try to do things my own way. I want to overflow with His hope!

God- help me to trust in you at all times so I can experience the depth of your peace and joy.

Spartan Watch Party

Ruby's Racers made a run for it on TV Monday night on Spartan Ultimate Team Challenge. They fought hard and I was so proud of them! It was great to watch them compete and hold their own! 

Although the competition was fun, what was even more exciting was seeing Ruby's story be told to millions of people. Only God could orchestrate that! 

We had friends over for a watch party....

It was a beautiful moment seeing Mark's love for Ruby on the screen. 

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Tabby woke up half way through the episode and joined the party.

Yes- Mark did wear his Spartan "uniform" the entire night :)

Since our kids were sleeping Monday night when the show aired, so we had another watch party tonight :)

Spartan Ultimate Team Challenge

We had a great time watching Spartan Ultimate Team Challenge last night! I am proud of Mark and his team and we were excited to have Ruby's story shared on national television! God is good and we continue to pray He will Ruby's story to positively impact people's lives. 

More to come....

People.com

People.com posted an article about our family and Mark's upcoming role in the NBC reality show Spartan Ultimate Team Challenge. The video in the article is a sneak peak at what they will show Monday night on NBC. Check it out if you are interested!

http://www.people.com/article/spartan-nbc-exclusive-father-daughter-epilepsy-cerebral-palsy

Mark and Ruby Running

The last few months Mark has been training to run the Riverbank Run 25K in Grand Rapids. He wanted to push Ruby the entire way. This past Saturday, he did it! A couple of great friends, Mark Walraven and Chuck Commeret, were by his side. It was a memorable morning and I am so proud of his dedication to Ruby and to getting his body in shape.

A family picture

Only true friends sign up to run a 25K with you! 

Thanks to Mark Walraven and Chuck Commeret for encouraging Mark and running with him!

Dad and his sweetheart

The runners and cheerleaders:)

Mark being interviewed by Wood TV8 

A congratulatory hug from sister after the race:)

Ruby's Story

Ruby's story was in the news today because Mark is pushing her in a 25K on Saturday. We are excited to be able to share how God has worked in our family!

http://woodtv.com/2016/05/12/racing-with-ruby-in-the-fifth-third-river-bank-run/

Two Years??

Wow- has it really been two years since my last entry? I guess baby #4 really changed things :)

I thought maybe it was time to get things up to date. If Mona (baby #4) ever reads this she may questions her existence and I wouldn't want that.

So, Mona, here you are :)

She was born on June 27, 2014. I was induced because of high blood pressure. Everything went fairly smoothly except a slight passing out session when my blood pressure dropped after the epidural. Nothing some meds and rest for a few hours couldn't cure.  Mark was a great support and we will thrilled to meet our little bundle of joy.

A few first glimpses....

Hopefully there will be more to come!