A Little Boy Named Noah

There is a little boy named Noah.  He is the son of my friend, Kate Estes.  Noah is 7 years old and is completely adorable!  I am totally smitten!  I mean look that this face! 

Noah isn't like the other children.  He has Mitochondrial disease.  He is medically very fragile and this disease will shorten his life.  Noah's tools for living are different from the other boys.  Most little boys have bicycles, skate boards, and running shoes.  Noah has a power wheelchair, a hospital bed parked in the play room, multiple IV pumps, drains, tubes, and private nurse.  He even has his own full-sized refrigerator just to house his IV nutrition and his many IV medications.  Noah's digestive tract doesn't work AT ALL!  All fluids, nutrition, medication, etc MUST be given by IV.  He has tubes to drain his stomach, bladder, and bowels.  This incredible little boy is totally "with it" but nothing goes into or comes out of his body without a tube.  Noah cannot control his own body temperature, even that must be done for him.

Noah loves to have friends over to sit on his hospital bed with him watching a video or playing Legos.  Most often though, Noah's visitors include his pediatrician (who makes HOUSE CALLS!), his private nurses, his physical therapist, his speech therapist, his case manager, and the delivery person from his infusion pharmacy.  This is his every day life.

Noah loves field trips and everywhere he goes he charms the socks off of everyone he meets!  Noah loves to go to church.  He loves to go the library, art classes, the park, community events - anywhere  something is happening.  Since Noah sees all pediatric medical specialties, most of his "field trips" involve traveling over 100 miles to the nearest city for doctors' visits, blood transfusions, surgeries, tests, etc.  As you can imagine, Noah logs MANY miles on the road each month strictly out of medical necessity.  This week, he actually has to make the long trip 4 or 5 days in a row (depending on his need for a particular procedure).

Like I said, everyone that meets Noah falls instantly in love with him.  That includes his 7 brothers and sisters, his mom and dad, and his nurse.  Yep...that's right...whenever Noah is able to go on a family outing, it is Noah, 10 other people, and ALL of the equipment that I described earlier.  His family has decided that as long as God leaves Noah on this earth, he will LIVE! and live well.  This amazing family actually ventures out for fun any time Noah is up to it.  They know that making memories together is the best gift they can give to each other.

As you can imagine, traveling with Noah and his side kicks is no easy task and requires a 15 passenger para-transit wheelchair bus.  Unfortunately, the Estes' bus that they have been driving for a few years has seen better days.  When they bought it, they got the best van that they could with the funds available but, even then, the bus was over 10 years old.  Living in the super humid SE United States has wreaked havoc on the bus.  The frame (and everything else underneath) has rusted irreparably.  Parts have begun falling off the bus and the bus is even leaning and threatening to literally break!  Their mechanic has warned that the bus is quickly becoming unsafe to drive.  As a result of the rust damage, the air conditioner is no longer working and is not repairable.  That means every trip to the hospital places Noah in danger due to the extreme year round temperatures in South Carolina.  Remember that Noah's body temperature must be maintained for him.

I am asking you for help.  I am hosting an online auction to raise funds to help the Estes Family buy a used bus that will allow them to safely transport Noah.  I have created a Facebook Event page where I can share the details of the auction and keep everyone updated.  Please visit https://www.facebook.com/events/1386783631556882/?ref_dashboard_filter=upcoming.  Be sure to let me know that you are planning to "attend".  Also  use the event page to invite your friends.  Please consider posting to your wall and the wall of any groups you are a part of that allow sharing these kinds of things.  I'd also love for you share the information on your blog.

Another way you can help is to donate items for the auction.  I need to have SOMETHING for people to bid on!  I'll auction pretty much anything that is new and in good taste.  :)  Some ideas would include gift cards and electronic gift cards, books and ebooks, dvds.  People love handmade items!  Whatever you make, consider donating it - scarves, hats, aprons, candles, soaps, quilts, blankets.  If you ship your baked goods, I'll auction those, too.  Together, we can help the Estes family get a safe bus for transporting Noah!

If auctions aren't your thing, please visit the YouCaring fundraiser page set up by another friend of the Estes Family.  There you can make a donation to the Wheels for the Estes fund.  http://www.youcaring.com/medical-fundraiser/wheels-for-the-estes-family/74584

I want to be sure to disclose that this is totally a volunteer effort.  I will NOT benefit from this auction in ANY way other than knowing that I have helped a friend keep her son safe.  EVERY penny will go directly to the Estes family via YouCaring or Paypal. 

If you'd like to learn more about my friend, Noah, check out the links below.

http://www.youtube.com/watch?v=cEuAQ6ja-Gw

http://www.youtube.com/watch?v=H0tBwy6rhLY&feature=c4-overview&list=UUlDz3ZaNP6FyJJ_KhTCudWQ

http://www.prayingfornoah.com/

https://www.facebook.com/PrayingforNoah

Y'all are the best!  I'm so thankful for each of you!  I'm blessed to get to call you my friends.

Time Flies!

Where has the time gone?  It seems that this year has just begun, yet it is nearly over!  Each day has seemed to melt into the next.  I always have ideas I want to share with you.  There are always I plan to write.  Then...I go to sleep and wake up to another day.

A lot has happened this year.  We have had several friends and family members pass into eternity.  My children have grown up so much - they now range in age from 18 to 6.  I've learned a lot.  I've failed a lot.  I have laughed and cried and hurt a lot.  I have grown a lot!  I wish that I had grown more.  I am praying that I grow even more in the next year. 

Through everything that we have walked through this year - through all the loss, failure, growth, joy and pain - one truth has remained.  We serve a living and sovereign God who is not surprised by any of it.  He is faithful.  His word is true.  He truly will never leave us or forsake us. 

Thank you for your friendship.  I hope to be able to share more in the days to come.  You're all the best!

There is NO Other Name

Please pray for our dear friends of many years. Three years ago, W (accompanied by his wonderful wife/my dear friend) preached our son's funeral. Tomorrow, we will be walking with them to bury W's brother, J.  This brother was a little sick and has hospitalized for slight pneumonia and dehydration on Monday.  On Wednesday a diagnosis of stage 4 small cell lung cancer was made.  The family was told that it was inoperable and untreatable.  By Wednesday evening, J was in Renal failure and passed away on Saturday morning. 

While J's sudden passing has left this family heartbroken, they grieve with a GREAT HOPE and with GREAT JOY! They know that J's faith for living and for dying rested solely in Jesus. What about those around you? Where is their faith? Where is their hope? Where is their joy?  Do they have a faith they can live by?  More importantly, do they have a faith they can die by?  Have they experienced the saving power of the freely given forgiveness of sin that was bought by the blood of Jesus? If not, please care enough to share the good news with them today. If you don't know how to do that, please let me know.  I will help you.   If you haven't experienced this merciful love of the one and ONLY Savior yourself, I can share with you today how that forgiveness can be yours. Today is the day of Salvation.

"Neither is there salvation in any other: for there is none other name under heaven given among men, whereby we must be saved."   Acts 4:12 KJV

Introducing This Rocky Road

Hello friends.  I'm so glad you stopped by.  Grab a cup of tea and settle in for a visit.

I have had this blog set up for at least a year.  I have multiple posts written and saved but none of them have felt quite right for a first post.  I have been waiting for something to seem like the perfect introduction into who I am and what God is doing in our family.  That perfect post has not come.  You see, I struggle with a little bit of perfectionism.  If it's not going to be perfect, I often put off doing it at all.  I have decided to just jump in where I am today, sick kids and all, and publish something today.  Maybe God will use it to challenge and encourage you as you think about the New Year.

This year our family is seeking to be more VISIONARY and DELIBERATE.  We are seeking to be more FAITHFUL and OBEDIENT in doing the things we know to do and are not doing or not doing quite as faithfully as we should.  We are seeking to SERVE in new ways.  We want to be a family of PURPOSE.

We have allowed both nutritional and spiritual junk food to creep into our lives in ways that are not healthy for our family.  More pointedly said, we have been eating too much fudge and chips and we have been watching too much tv.  We have been unfaithful to feed our physical and spiritual bodies in a manner that would be PLEASING TO GOD.  Yes, we eat nutritional food and read Scripture also but...

We have allowed disobedience to creep into our children's behavior.  I don't know where they get it.  ;)  Most people say they are very well-behaved children, but delayed obedience, having to be told more than once to so something, or having attitude when given instruction is really just plain old, ugly disobedience.  We have been unfaithful in requiring them to OBEY immediately and sweetly. 

We have been unfaithful in hospitality as commanded in Scripture.  Of course we like to have our friends and family visit but we have failed to OBEY God in hospitality for the purpose of sharing the Gospel and encouraging Believers.  We have been unfaithful to "bear ye one another's burdens".

We have also been unfaithful in our "going" this year.  We are commanded in Matthew 28:20 to "Go ye therefore, and teach all nations, baptizing them in the name of the Father, and of the Son, and of the Holy Ghost:  Teaching them to observe all things whatsoever I have commanded you".  We are praying that we will GO every time God presents us with the opportunity.  We are also praying for a calling to a unique ministry for our family.  We want to know beyond all doubt that God has called us to give our lives fully to "this work".  We have "good ideas" for ministry, but we want to pursue God's ideas.

I know there are probably at least a dozen more areas of our lives where we are lacking FAITHFULNESS but these are the ones coming to mind right now.  We are so thankful that God never lacks faithfulness.  We are so thankful that His mercies are new every morning and every year.  Our prayer is that we will each be more like Jesus at the end of 2013 than we are at the beginning. 

This time next year, you will be the same person you are today except for the books you read, the people you meet, messages you hear, the things you watch on tv, the music you listen to, etc. What/who will you allow to influence you as a person this year and where will those influences take you?

I'd love for you to comment share some of your favorite verses, books, magazine, songs, etc that challenge and encourage you to live a called-out, separated life for the cause of Christ.  Some of our favorite books that we will be revisiting this year are Shepherding a Child's Heart by Ted Tripp, Keeping Our Children's Hearts by Steven and Terri Maxwell,  The Hospitality Commands by Alexander Strauch,  and The Personal Touch by Rachel Crabb.  One of our favorite cds is The Centrality of the Home in Evangelism and Discipleship.  One of our favorite hymns if Oh, The Deep, Deep Love of Jesus.  Michael Card does a version of this that is pretty good.  We also like Be Thou My Vision. 

May we be a great source of sharpening and encouragement to each other this year.  Pray for our family as we seek be PLEASING to HIM in all ways this year.  I will pray for you as well.

Happy New Year to you all.