October 14, 2014


So I'm back.  The cancer isn't.  At least we hope it isn't.  We just scanned again and I'm waiting on results.  I continue to have folks tell me they miss the blog and maybe I miss it too... Not real sure.  But here I am.  Not sure how often I'll be here.  But right now, I'm here.  I feel a bit like I'm resurfacing...because yes, I have definitely been hiding out while I worked through things.  There have been times that I have been appropriately emotional, times I have buried it and times I have been down right hormonal over the past three years. I needed time.  And I still have no room for grumps...FYI.

Quick catch up...Clayton is doing good.  He is an ever-loving mess!  It amazes me that something so full of life and joy can scare me half to death everyday.  Right now he is obsessed with letters.  He loves to run around the house grabbing his letters and the objects that start with those letters.  E is for his suede elephant, F is for frig, M is for mama.  You get it.  He loves to learn and wants to learn so badly.  We decided homeschool is best for him.  With all of his health complications, it is hard to put his well being 8 hours a day in the hands of someone else.  Also, the honest truth is not everyone raises children to behave as they should towards people with challenges.  I will not put my child through that more than is absolutely necessary...because whether he may ever be aware of any rude behavior by others, I would be aware...I feel confident the school system would not offer enough mediation services to tackle that situation.  It is best that he is homeschooled.  Period.  I don't care what anyone thinks about that decision and I have zero desire to listen to anyone's opinions on the matter.  It is mine and George's decision, it is made, it will not change and I would hate to be rude to someone because they cannot respect our decision.  I mean all of that in the nicest way possible.

We have been thrilled to find a new oncology home at Nemours in Pensacola.  It really has been an incredible experience for us over there.  We have been trying to consolidate so we now have a urologist, nephrologist, oncologist and Pulmonologist all in one spot.  They work with Sacred Heart and the atmosphere is just awesome and comforting...close to that of our MSKCC team, whom we miss desperately.  On that note, to come full circle, we are working with USACW to help them with what we can to see them build a wonderful facility and team for our local kids.  In June, we met with them and toured the new facility and were thrilled to be able to donate $10,000 from The George Clayton Childhood Cancer Foundation to fund one of their new PICU rooms.  That donation of course was made possible after our successful Angel Auction this past March that was supported by local artists and businesses!  Having the foundation is a way for George and I to work towards giving back to our community and paying forward the kindnesses shown to our family so the whole thing makes us very happy!

We built our house and moved in mid June.  Our own little livable chunk to call home all for $56,000.  Yep.  We built a house for $56,000.  Everyone laughed at me when I came up with this idea, but one year later here we are!  It was a long winter and spring, but we did it ourselves.  Building a house for that price of course means there is always an unfinished project to do, but we'll get there.   This was all part of my grand plan to change our life from what we want to what we need and to adjust it to what we needed for life with Clayton.  It's still a process, but we are learning.  It's all about less is more and quality not quantity.  I will say this though, I LOVE having a smaller house.  Sure, you have less storage space and you have to decide what is really important, BUT it is less to clean which means more time for things that matter!  My favorite part?  A small bathroom!  Yes.  I LOVE having one small bathroom.  I mean LOVE it.  I mean really, who likes cleaning bathrooms?  Not me!

This was about a month after we moved in, when we were in the process of doing battens and cleaning up the outside from construction.  Truth be told, there are a few battens left to finish...it's been hot!  We moved in as soon as we could knowing there was a lot to finish.  When I say as soon as we could, I mean we did what we had to to get the certificate of occupancy and moved in a day after we got it.  It looks much less like a construction site now and more homey... I'll have to get another whole house pic soon.  Over July and August, we didn't do anything that wasn't absolutely necessary because of the dang heat.  Hoping we can make good progress as it cools though. Obviously the list is long, exterior paint, cover porches, lattice, etc.  We'll get there.  One thing that tends to confuse people though is that they think $56,00 must mean a "blah" home.  Not the case.  We have granite counters, stainless steel appliances, nice floors, nice lighting fixtures and fans and even a subway tile bath surround. $56,000 was all about deciding where it was important to put money, to hire people, to DIY it etc.  So while the house isn't "blah" and we do have nice things, we used our heads and really focused on where it was important to spend money; such as on the septic tank, sanitary plumbing only, HVAC, drywall.  Along with family and friends, we dug footings, poured footings and built block piers and filled the block all ourselves.  George built the entire house from the ground up.  The only thing he did not stick build was our prefab trusses.  But we did raise them and install them ourselves.  George and two of our good friends roofed the house.  My family did the electric work.  I thrifted our bathroom vanity and made our vanity top myself out of lumber from Lowe's.  We bought raw unfinished cabinets, installed them ourselves and I am finishing them myself.  We installed our own floors (that we got on a mega sale from Home Depot).  I tiled the bathroom floors and tub surround myself.  I scored some mega deals at Lowe's and got all our stainless steel appliances for under $1,000.  George built our porches (which are patiently waiting to be covered).  And the little bit of landscaping we did involved a buddy grading our slope for us and every piece of sod or plant was done by me.   We only did necessary landscaping to avoid erosion because of our slope.  And I have done all of the painting myself.  Oh and our counters were made possible thanks to getting a great deal at Coastal Stone and Cabinetry.  So we have nice things, but we didn't splurge or anything.  We got basic quality things that would last and not need to be replaced in a few years costing us more money.
The only reason I throw all of that out there is because I know some were curious and I think others misunderstood what we were doing when I previously stated we were building a house.  There is a difference between building a house and having a house built.  Having a house built is costly.  Building your own house is frugal.  It isn't easy, but there is such an enormous level of satisfaction from building your own home.  

We had a lot of friends help us out with the house for which we are eternally grateful, but I have to thank three men most of all without whom the house would have never been done...of course George, but then also Mike and Buck.  Clayton says thank you for his house!

...This past year has undoubtedly been a struggle.  Oh hell, the past three years have been a struggle.  But things for us got really scary after the two severe respiratory episodes Clayton had nearly two years ago.  Then last summer...there are no words adequate enough to describe the trauma I endured from last summer.  I have been trying to recover.  Why me and not Clayton?  Because he is a champ and bounces back in style...I on the other hand have to find all of my pieces and put them back together one at a time.  Adults just don't bounce back like kids.  I am really hoping now that we are in the house, things will slow down, we can find peace and we can keep recovering from everything.

One of the things I'll open up more about on here is finances.  After some conversations I have had with some folks I have realized how much people truly to not understand the financial implications of having a child with health problems.  This isn't something that is simply our issue, it is something that is a national issue when it comes to healthcare for children and people need to be more aware of these things to solve the problems in the future.  So I figured I would be more open about that and share.  We were so fortunate in the beginning to have had a secondary insurance for Clayton that helped cover his many many hospital stays.  But during this process, we lost our secondary insurance and have been trying to find our way through the medical bills since then.  It's like every time we get everything taken care of, we are three months down the road and looking at a whole new round of medical bills.  For Clayton alone, we have a minimum of $450 every three months in out of pocket medical expenses.  That DOES NOT include ER visits, sick baby/problem doctor office visits, ambulance rides, hospitals stays, surgeries, past bills, traveling expenses, medications, or the special needs of a special needs child, etc.  That is only to check in with his specialists once every 3 months and to pay a $200 facility fee for doing his routine scans. If we could put all the past stuff behind us, it might be more manageable.  Might be.
THANKFULLY, we have had the AMAZING support of Mulligan Ministries and Barnwell Baptist who have so graciously devoted their fundraiser the past two years to Clayton.  Without y'all, I truly do not know what we would have done.  I really don't.  We have also been fortunate to get support from Jensen's Heart of Gold and Angel Ride.
So THANK YOU to these people, these foundations and to the folks out there who love and care about my sweet baby boy!

P.S. On the financial topic, a few people were confused about The George Clayton Childhood Cancer Foundation.  Our foundation, benefits local children's hospitals and pediatric cancer research.  It has ZERO impact or connection to our finances.  We just don't want anyone getting that confused because as a non profit foundation, no one can profit from our foundation's activities, so that is a BIG, very important distinction for folks to understand.