Category Archives: Faith & Hope

Great is Thy Faithfulness

Faith & Hope, Parenting, Special needs children

20151123_074646

Have you ever heard of an old hymn called Great is Thy Faithfulness? If your were raised Baptist you probably do…

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see
All I have needed Thy hand hath provided
Great is Thy faithfulness, Lord unto me!

I never appreciated this hymn mostly because there was always someone who sang it off-key in the church pew behind me when I was a kid. Nevertheless, I’ve come to realize just how great His faithfulness truly is (and has been) in my life.

About a year ago, I told my husband that I felt like the Lord was calling us to sell our house and pay off our remaining debt. He laughed at me and somewhat flippantly said, “Yeah, I’ll pray about that.” So I didn’t push the issue (too much) after that.

By the time summer came around, God had softened Kevin’s heart to the idea of selling. But since we were busy with Joni & Friends family camp and the GFPD conference, we just didn’t have time.  However in August we started giving away and selling some of our belongings. In September we put our house on the market and within two days of back to back showings, we received 5 offers. Three of those offers were more than we could have hoped for.

In the process of selling, we found a non-traditional apartment that would only cost us $550/month, all bills paid. In essence, we hit the renters jackpot. (Unfortunately we won’t be able to move in until after the first of the year; so for now my brother-in-law is putting up with us.) I just love how God provides.

But that’s not even the coolest part of what God has been doing these past few months. After we sold our house, I came to appreciate even more the part of the hymn that says, “All I have needed Thy hand hath provided.” Here’s why..

Around the same time I first felt the Lord calling us to sell, we were in the process of ordering Gideon’s wheelchair. I knew it was going to be a tight fit in my jeep compass, but my vehicle was paid off. We certainly couldn’t make payments on something bigger because we are a one income family. I remember sarcastically telling God, “I’m gonna need you to figure out our vehicle situation!” God must have shook his head and laughed. Looking back now, He saw that need long before we did and He went above and beyond our need when this gift was dropped  into our laps….

20151123_074432

That is a 2015 Toyota Sienna, BraunAbility  wheelchair accessible van. Who gave it to us you ask?? If you find out, please let us know!!  Apparently there is a family out there that chooses to anonymously bless others in extravagant ways. Someone pointed them towards my blog and the family’s liaison reached out to me to let me know that we had been chosen to be the recipients of this amazing free gift. Even after a month of driving the van, it still doesn’t seem real.

It would take a book to write down all the ways God has continually provided for my family.  He has been faithful, time and time again. We are beyond excited about this new chapter that is unfolding. We don’t know where we will be in the next year or so, but that’s the fun part. We have learned throughout our marriage that we don’t have to worry about the details. We are committed to praying about our needs and letting God work out the details. Afterall, all we have needed His hand hath provided.

Great is Thy Faithfulness!!

Ephesians 3:20 “Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”

Pause for PBD

Faith & Hope, Parenting, Special needs children, ,

On October 5th, we will Pause for PBD and I would like for you to join us.

On this day, the Global Foundation for Peroxisomal Disorders will be celebrating it’s 5th birthday, and in honor of this foundation that helps families affected by PBD, I’m asking for some favors from my readers. But before I do, let me tell you how this organization has blessed my life.

When Gideon was diagnosed, I didn’t know anyone who had a child with PBD. It’s pretty rare. Shortly after, I began blogging about my son and within a few days, my first post was shared with Shannon Butalla…who lives in Omaha Nebraska. When I told her what the doctors said (Gideon wasn’t going to live past one year old) she said, “I don’t want to tell you that your doctors are wrong, but they’re wrong.”  After 30 minutes on the phone with her, I was relieved to finally know someone who actually knew what the heck they were talking about in regards to PBD. Shannon has lived and breathed it for the past 13 years with her son, Sam.

Shannon and a few others are responsible for the inception of this organization that provides hope and support to families like ours. They provide a means for equipment exchange and through donations and fundraising, the GFPD was able to help cover the cost for us so we could attended their Family & Scientific Conference in Omaha.

Today, we are now connected with an enormous family of some of the strongest people I know…people who battle this horrible disease every day as it slowly pulls our children away from us.

So it’s my hope that you’ll be able to help the GFPD celebrate its 5th birthday in one or more of the following ways.

  1. Click HERE to purchase a Pause for PBD t-shirt (their goal is 300 shirts..but I think we do better than that!!)
  2. Share this LINK on your social media sites to help raise awareness & funds
  3. Use the hashtag #PauseforPBD on social media as well a photo of Gideon (or any other PBD babies you may know…You have my permission to share the one below.)

1

I just want to say thank you to all my readers. Your comments and messages of support have meant more to me than I could every adequately express.

Thank you for continuing to follow our journey and don’t forget to Pause for PBD on October 5th!!

To learn more about PBD, click The GFPD.

 

 

 

Hope Kids- Legoland

Faith & Hope, Parenting, Special needs children

20150906_220146

Tonight we attended our first event with Hope Kids; which is this amazing organization for children with life threatening medical conditions. It’s the kind of club that we are so thankful for, but we wish no one needed it.

Hope Kids sets up different events every month. This evening was Legoland, next week is Jump Street, the week after that is family photos, and this list goes on and on. The best part is that every event is free for Hope Kid families.

We had such a great time tonight. Legoland was open only to our group so the lines were almost non-existent. Gideon actually rode a ride (he sat between Kevin and I) and he seemed to be engaged. It was a dark ride with flashing lights and right until the end, he sat between us like a big boy! Unfortunately, he passed out half-way through the night. Don’t worry, big sister hit every other ride for him.

20150906_231800

The people we met were amazing. All facing similar, heartbreaking struggles and yet I didn’t see one person downtrodden. Everyone was smiling and laughing… even in the midst of the trials they face. That’s when I realized what Hope Kids really does. Sure they provide the obvious free event; but what they really provide is hope.

Hope that these kids can have some sense of normalcy while they’re here with us. For the parents it’s a relief that for a few hours, no one is concerned about medication or the upcoming doctor’s appointment. And the siblings aren’t worried that people are going to be staring at them because their brother or sister is screaming, self-stemming, and/or drooling.

Tonight we felt like we were at a family reunion….and we only previously knew two other families there!! (One of which we met at Camp Allen! Shout out to the Sakzenian family!)

Thank you Hope Kids, for bringing us together. Thank you Legoland for opening up after hours, just for us. And if you give to this amazing organization let me just say another sincere thank you!! It’s only my first event, but I can say with confidence that with your money, you gave more than an experience… you gave a family hope.

If you or someone you know has a child with a life threatening illness, CLICK HERE and register to become a Hope Kid member. 

If you’d like to donate, click HERE.