Monday, October 7, 2013

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  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.

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.

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

Thursday, October 3, 2013

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!