Team World Vision

In 2007, Mark and I traveled to Haiti with a group from our church. It was there God broke our hearts for the poor and showed us His heart for the least of these.  Out of this trip, the desire to adopt was born and in 2008, Ruby, our daughter, came home from Ethiopia.

Over the course of the year, Ruby's severe needs became evident and we grieved. It was a tough time, but slowly we began to find a new normal; we discovered God's peace in the midst of chaos. Amazing friends and family supported us during this crazy time.  God used His people to surround us and show us His faithfulness and provision.

Even so, over the years after Ruby came home, I dealt with some lingering anxiety. It wasn't bad, but often this nagging, anxious feeling accompanied me. It would creep in at odd, quiet times, causing my heart to pound and mind to race. I did seek some counseling and that was helpful, but it didn't go away completely.

About this time, Mark starting running with Ruby. At first it was just to get in shape again, but after awhile it became a sweet thing he could do with her. In 2016 he decided to push her in the Riverbank 25K with an organization called My Team Triumph. I proudly cheered them on, all the while thinking I should be out there with them.

So, when it came time to start training for the 2017 Riverbank 25K, I registered for the race and began running. I hadn't really run much since before having kids (8 years before this) so I started slow. But little by little, my body got stronger and I found myself enjoying the process. Even though we were in a hard season with Ruby, I found God working in my heart though the training.  God used running to ease my anxiety and help me to focus more on Him.

A year later, when Kelly, a World Vision rep came to Calvary to share what Team World Vision was doing, I was immediately intrigued.  All across the nation, Team World Vision members run road races while raising money and awareness for kids and communities in Africa who need clean water.  Things I was passionate about were coming together.  This would be a way I could give back after being on the receiving end of so much help for several years. I felt God nudging me to be a part of this.

On October 21, I will be running the Grand Rapids Half Marathon with Team World Vision. I am honored to be able to raise funds for World Vision to bring clean water to children in Africa. Nearly 1,000 kids under age 5 die every day from diarrhea caused by contaminated water, poor sanitation and improper hygiene. But, this global crisis could be solved within our lifetime. $50 bring clean water to one person. I have a goal to raise enough money to bring clean water to 60 kids. Will you partner with me? Will you sponsor me to run this half marathon so more kids can have access to clean water?
I appreciate your support!

Donate Here

A Van for Ruby

Sweet Ruby. 

God took us on a wild ride when He added her to our family.  The road has been tough, but He has proven His faithfulness over and over again. 

In the beginning of this adoption journey, we prayed that God would give us feet to walk the path He had in store for us.  Little did we know what that meant! Throughout the past nine years, God has used His people to surround us and support us over and over again.  It is a hard thing to be at the receiving end of so much giving. It is humbling and vulnerable, yet we thank God for all of this support. We could not have walked this road without so many who were the very hands and feet of Jesus to us. We have been blessed by your meals, prayers, financial gifts, acts of service, respite care,  encouragement, listening ears... the list could go on.  

I wish I could report that we didn't need your help anymore, but that is not the case. Ruby has many needs, especially financial ones. She is an expensive little girl! We set aside thousands of dollars each month for her respite care, equipment, diapers and therapy. We would love to be able to do life with Ruby on our own, but we have learned that this is not possible.  Instead of fighting help and being stubbornly independent (which I have done before) I have tried to be honest and open about the struggles of life and then graciously accept help when it is offered. 

This support from all of you is vital for us! 

As they say, "It takes a village". We have found this to be very true.

Again, we find ourselves in a place of need. 

Our family desires a reliable van for Ruby. 

For the past two years we have been driving a 1996 Ford Econoline that was given to us by a wonderful family who no longer needed it. What a gift this was to us! We are very thankful for this van, but unfortunately, it is tired and it is no longer a reliable mode of 

transportation for our family. We need to find something different, but we weren't sure what our next move would be because wheelchair vans can be very expensive! 

As a result, a family friend started a "Go Fund Me" page to help us get a more trustworthy vehicle. We are humbled to be in this position once again, but we also feel honored and blessed to be on the receiving end of your love. It is amazing that over six thousand dollars 

have already been raised!

Thank you, thank you, thank you to all of you who have made life with Ruby more beautiful by supporting us in a hundred different ways. Thank you to those of you who have given to this campaign already! From the bottom of our hearts, we appreciate all of your support.

If you are still interested in helping us get a van for Ruby, please check out the link below and feel free to share on social media as you see fit.

https://www.gofundme.com/rubys-ride

Thank you!!

Ruby Update--sleep

Thank you for all of your prayers for our family lately! It's been a long five months and I figured it was time to post an update about how Ruby is doing with sleep. Here's the scoop:

About mid-November of last year, Ruby stopped sleeping well. Now, she's never been a great sleeper, many kids with brain damage suffer from interrupted sleep patterns, but with medication we were able to manage her sleep. But for some reason, in November she started waking up screaming mad, sometimes she would be inconsolable for hours. We weren't sure what was triggering the screaming. Was she is pain? Was she hungry? Did she have a cramp or an itch? Was she getting sick? We asked ourselves all of these questions, but it's tough to get an answer when you have a non-verbal kid.

So, we started adjusting things as much as we knew how at home. We increased her meds a little, added more melatonin, used oils, adjusted the temperature in her room, played different music at night, adjusted her position more often, made sure her feet were warm...all to no avail. Then, we started talking to doctors about this problem. I pushed to get tests done to make sure there was nothing else going on that we didn't know about it. Tests often take weeks or months to schedule and get results. We first did an overnight EEG to check for seizures at night, but the test showed nothing new there. Then, we did an EGD where they sedate her slightly to put a scope down to look for stomach/esophagus issues. Nothing to cause screaming at night was found there either. Next, we started working with sleep medicine doctors who did a sleep study on Ruby. They found that she snored--seriously, that was listed in the results. So, no great answers there either.

At this point we were frustrated and exhausted. We were hoping to find something we could fix, a reason for these screams.  Unfortunately, it looks like the reason could just be that she has severe brain damage and CP and a seizure disorder. All of these can cause sleeping problems.  This conclusion didn't give me a lot of hope for solving her sleep issues.    

Thankfully, after the doctor saw she didn't have sleep apnea, he was willing to put her on some strong sleeping meds. This still was a process though as we figured out the correct mix.  It included a couple of nights where Ruby screamed/cried for 7 or 8 hours. One time she wouldn't stop so I drove her to the ER just to get sedatives. It was rough!

Now, after several weeks of messing with meds, we seem to be in a better spot. This past week she slept better than she has for the 4 months before that, so we are encouraged. Her sleep isn't perfect yet, but now we are only getting up to reposition her and settle her back down a couple of times a night, which is livable.  Her hips are dislocated because of her cerebral palsy and I do think they cause her discomfort at night. Our next hurdle is to find some solutions for her hip pain which will hopefully help her sleep better as well.

These last few months have reminded us again how thankful we are for the community of believers who surround us. In the middle of exhaustion you all have stepped in and prayed, helped with meals, had our house cleaned, wrote us notes, even spent the night a couple of times with Ruby so Mark and I could sleep. It is humbling to be on the receiving end of so much grace and love, but we are incredibly thankful and don't know how we could walk this path without all of you!

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. 

---

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!

Ruby Update/Weekend Recap

Ruby has been giggly and content all week, but unfortunately she had seven seizures!  We have no idea why she had so many after the pneumonia was gone. We increased a med last night and thankfully today was a great day.  I am hoping that stops the seizures.

We have been out with friends and family all weekend and the kids have done so well. They are playing hard in the sun and then crashing at night. Ruby is tired after her seizures, but other than that she has been so happy. Her lack of mobility makes outdoor activities a little tough. The wheelchair does not do well in the sand at the beach or bark in the parks and this can be frustrating.

Even so, I am thankful for her smile and the beautiful weather. Tonight I am feeling peaceful and blessed.

Hope you all have a blessed Memorial Day!

ABR Trip Recap

We are still recovering from our crazy ABR trip last week. Here's the story…

Unfortunately, Ruby threw up in the car on the way to Pennsylvania. That night (Wed night) she spiked a high fever.  Mark made a Walmart run in the middle of the night to get her some motrin and a thermometer. We were up most of the night with her as she was pretty miserable.

Thankfully, in the morning she didn't have a fever and she seemed tired, but okay, so we stuck it out for our training session that day.  We made it through two sessions and an evaluation, but, by the end of the day Ruby was so exhausted and the fever came back.  We put her to bed early and she slept hard for a few hours.  Right when Mark and I were ready to go to bed Ruby started fussing. Her fever was high and she was so uncomfortable. She stayed awake whimpering from 11pm-4am.  Mark and I tried to decide what we should do. We knew she needed to see a doctor, but we were 12 hours away from home. Should we take her to the ER in Pennsylvania? Should we get in the car and drive home through the night? Should we wait it out and try to get her last training session in?

Finally she crashed and so we decided to as well. We slept from 4:30-6:30am and then got up and got ready to drive home. We met with Ruby's trainer for about 30 minutes before our scheduled session. He quickly explained the last of the exercises we needed and he gave us the rest of our therapy tools. Then we skipped the session and drove to Michigan.

We drove for a long 12 hours and went right to DeVos Children's Hospital in Grand Rapids.  Ruby was a mess by the time we got to the ER. She threw up on the way to our room and cried hard for awhile. Her fever was 103.5 by this point. They did a chest x-ray and found pneumonia, which is what we had expected.  She probably aspirated Wednesday morning, which caused the pneumonia.

Thankfully, her stats were fairly good so they gave her meds to control the fever and vomiting and then sent us home on oral antibiotics.   Ruby felt miserable for the two days, but by Sunday night we started to see a few smiles again.  She has been home from school all week. She is doing fairly well at home, but still so tired and coughing a lot.

To top this off, Tabatha had fever off and on from Saturday-Tuesday.  Needless to say, it has been a LONG week and we are all tired.

We are glad we got what we needed from the ABR training. We are convinced this is the best therapy for her as her body continues normalize and show positive changes. It was disappointing that the trip was so exhausting and stressful, but we are thankful the therapy is helping Ruby. This makes all the stress worth it.

ABR Here We Come

Mark, Ruby and I are heading to Pennsylvania tomorrow for some more ABR therapy training. It will be a quick trip; we will drive most of the day tomorrow, have training sessions all day Thursday and Friday morning and then we will head for home. My parents are graciously taking Tabatha and Charlie for three days. They are THRILLED to be going to Grandpa and Grandma's house for a sleepover :)

While I wish our time away could be spent differently, I am looking forward to traveling with Mark and Ruby. Thankfully Ruby is usually a great traveler and it is always nice to connect with Mark in the car and eat out with him for a few days.

We anticipate learning new exercises and seeing how Ruby's body has changed since we were in Montreal six months ago.  Please pray we are encouraged about the progress we see and feel energized for many more months of therapy for our little sweetheart.

This World is Not Our Home

Hallelujah! He has won the victory!

Hallelujah! He has done it all for me!

During an amazing Easter worship service, I was reminded that this world is not our home.  

Because of Jesus' sacrifice we have HOPE and JOY for the future. What an incredible truth!

I hope you were able to experience the Easter story today.  

Heavy Heart

Can my sweet girl just have a break.

I had tears last night as I watched Ruby seize. She had been up for hours, then she threw up and we found her in bed covered in it. Then, we got her cleaned up and she was finally settling down when she started seizing. This was a seizure where she cramped up and then cried through it like she was scared or maybe in pain.  There I sat by her side, helpless. All I could do was hold her and tell her how sorry I was that she had to go through this.

We have been experimenting with the feeding pump all weekend. Last night we gave her her evening feed and her morning feed slowly through the night. I thought this would help her tolerate it but apparently that wasn't the case.  We will keep experimenting; I often wish she came with a manual.

My heart is heavy this morning. Our reality with Ruby hits hard sometimes.

"Hear my cry for help, my King and my God, for to you I pray.  In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly." Ps. 5 :2-3

Feeding Pump

For the past couple of months, Ruby has had a hard time tolerating her morning feeding.  We have had to feed her very slowly and we always keep a towel close by, just in case it comes back up. Unfortunately, she has thrown up several times, even twice on the bus ride to school.  

I am not sure why this has changed.  She used to be able to tolerate all of her feedings just fine, in fact, I was always thankful that we hadn't had any feeding tube issues.  Now, watching her be uncomfortable when she eats in the morning makes me sad and helpless.  I also worry more about her aspirating when she throws up.  

Today, because of the advice of a good friend, I decided to call one of Ruby's doctors to ask if we could order a feeding pump.  A pump will regulate how quickly Ruby gets the formula so we can slow down her feedings.  Now, we need to hold her tube for the entire feeding; in the morning this can occupy one of us for 45 minutes. With a baby on the way, this is going to be tough for our family.  With the pump, we could set her up to eat, push a button on the pump and then have our hands free while she eats.

The doctor called back today to tell me she ordered a pump for us. Airway Oxygen (our medical supply company) will call us soon to set up a time when they can drop off the pump and teach us how to use it.  I am not looking forward to having more medical equipment in my house. In some ways, this seems like a set back. On the other hand, this should help Ruby feel better in the mornings and we won't have to worry about her throwing up on the bus. The pump will also give us more time to help the other kids in the morning.  Maybe it will make mornings less stressful. 

I used to fight for Ruby to make gains and meet developmental milestones. Now, I fight for her to be happy, healthy and content.  This may seems like I have thrown in the towel, but that is not the case. I think God has just taught me to be content with where she is at.  Most days I accept what is and find joy and peace in daily living.

If the feeding pump improves Ruby's quality of life and helps us keep the stress down at home, then bring on the feeding pump!