Now or never

I sat down Thursday night to blog about a tea party we had for the girls and some of their (and my) friends, but for some reason our internet was being verrrryyyy laggy and I decided to wait until the next day.

I should know better - I really should.  If I put off a happy, just plain fun post, something more urgent will come to the forefront, and I never seem to get back to that happy post.  I'm determined not to let that happen this time, so I'm just going to try to pack in the Noah news and the fun stuff now before anything else comes up.

First, the Noah news.  Noah is really, really struggling right now with some pretty overwhelming fatigue.  He's still having episodes of pica, and eating even the teensiest bit of paper can leave him curled up in a ball and shaking with pain.  Labs drawn Thursday were just, well, crazy.  To me it seems like the lab is handing a lab sheet to a chimpanzee and letting him fill in the numbers - they just don't make sense most of the time.  There are lots of situations where several lab numbers will be off, and that package of labs will point to a specific issue, body system, etc.  These labs are just all over the place - bad hematologic numbers, worsening liver numbers, low pre-albumin, electrolyte imbalances, and half a dozen or so others.

Dr. B and I talked Saturday morning, and he and the hem/onc doctors agree that we have simply GOT to get Noah's hemoglobin up.  We can't be waiting until his numbers hit rock bottom or he won't have any decent quality of life.  The plan for now is to go to hem/onc bright and early every Monday for iron infusions. We'll transfuse if those don't work, but we'll be heading to hem/onc every Monday AM for the foreseeable future.  I'll be honest - these are HARD visits.  We have to wake Noah up hours before his regular wake-up time, wash him up, dress him, get his morning IV meds going, and be out the door by 7 AM.  The visits last hours and we're gone most of the day.  We're glad to do whatever it takes to help Noah feel better, but at the same time we're feeling a little overwhelmed at the prospect of doing this weekly instead of monthly now.

With all that's been going on with Noah lately, I decided that I needed to do a little something special with my sweet girls.  Jeff and I work very hard to make sure that none of our children ever feel like they are growing up in Noah's shadow - after all, he is a precious part of our family, but he is only a PART.  Each of our children are as cherished and enjoyed as he is!

We decided to have a fancy-schmancy tea party with some friends.  We invited my mom and two friends who each have some little (and not-so-little) girls, so with 12 of us in all there was plenty of fun to go around.

 (Left to right - Elena, Hannah Grace, Sarah F., and Bekah)

(Left to right - Hannah F., Sarah, Mary Faith, Caroline)

Of course, my girls wanted absolute maximum fancy, so we went all out with a lavishly decorated table, pretty dresses, and even curlers in their hair.  Mary Faith's still-wispy toddler hair was less than cooperative, but still charming in its own sweet way.  :-)

One friend brought assorted tropical fruit and the other brought assorted finger sandwiches.  I'd splurged and spent some birthday money on real Scottish tea cakes at World Market a few weeks ago, and Sarah made her famous tiger butter (chocolate peanut butter fudge).  We sprinkled little star cookies between the other sweets for fun.  Many pots of piping hot Earl Gray tea rounded things out.

There was a lot of laughter and we all had a wonderful time.  Eventually the girls all shed their fancy tea time dresses and went outside to enjoy the beautiful weather, and my mom and friends and I were able to enjoy visiting.

Jeff kept our boys (and our guests' various brothers) entertained and happy, and enjoyed snuggling with Noah.  They managed to find their own, less feminine, variety of fun . . . :-)

(Jeff, Matthew, and their new friend the black snake.  Yuck.  WHY do boys want to chase, catch, and hold these things????)

Later that evening Noah and William had fun playing some Lego Atlantis games online.  (Well, William played and Noah watched/barked out orders LOL.)  Noah loved the game, and William enjoyed knowing that Noah was loving it.

Noah enjoyed spending some time with a friend one evening last week.  He quickly grew too tired to play, but his sweet buddy Sam didn't mind a bit - they both chilled out on Noah's hospital bed with David and Timothy.  

We're SO thankful for great friends like Sam who is blind to the tubes, wires, and fatigue and just enjoys spending time with Noah!

As I'm sure you all can imagine, I've done a lot of thinking and praying about this blog and its future this week.  This blog was created for a singular purpose - to inform friends and family of Noah's current status.  As I wrote, I found that I also enjoyed using it as a sort of online journal - a place where I could go beyond medical facts and figures and share my heart.  It was never meant to be a place of controversy or drama or meanness.  It certainly wasn't created so that others would have a place to attack me or anyone else.

I've considered a lot of things this week. 

I've come very, very close to shutting the blog down completely and replacing it with a private blog for close, IRL friends and family only. 

I've come very close to putting all comments on full moderation, but that wouldn't actually do anything to protect me from any unkind or hurtful words.

I finally decided to draw from the wisdom of a dear friend of mine who ran a large homeschooling Yahoo group and who handled some uncalled-for drama there very, very wisely.

I appreciate and am deeply thankful for everyone who reads this blog and who lends support through their prayers, comments, etc.  I think that it is very easy for us to behave badly online in ways that we would not behave in person.  I consider each of you to be my valued guests, and I would like you to behave with as much kindness and civility as if you were sitting in my living room. 

I understand that you will not all agree with everything that I say, or every decision that Jeff and I make.  That's OK - we wouldn't expect a readership of this size to agree about everything - but I do expect you to be courteous if you choose to interact here.  No one is forcing anyone to read, or to pray, or to comment, or even to give, and if this blog ever becomes a place where you don't want to visit, it's OK to stop coming.

It's not unusual for people to ask us questions about some of the choices we've made in life - why we have so many children, how/why we homeschool, how/why we parent the way that we do, etc.  I know that because our choices may be somewhat non-mainstream, many people have a sincere curiosity.  I don't mind answering sincere, courteous questions as time allows, BUT I will not allow attacks, mean-spiritedness, etc. here online any more than I would allow someone sitting in my living room to behave that way.

Things got very ugly and out of hand here last week, and I will not allow that to happen again.  Like I said, comment moderation would be a lot of work for me but would not protect me from any cruel comments, so I'm not going to do it.  What I am going to do, however, is immediately delete any comment which I feel is mean, unkind, harsh, etc.  I won't take the time to even acknowledge these comments here any longer.  I feel that to do risks inciting further unpleasantness and drama.  This blog receives hateful comments a couple of times a year, and because they generally allude in at least some way to our lifestyle choices, I've tried to calmly and kindly answer those concerns here, but I'm just not doing it any more.  This blog only receives mean-spirited comments a few times a year, but even that is too much drama.

This isn't rocket science.  I am hurting.  My family is hurting.  We are losing our son.  Every day I see my worst nightmares coming true before my very eyes, and it is breaking my heart into smithereens.  I cannot and will not devote any more time and energy to people who choose to visit my virtual living room only to turn on me unkindly.   I will also not allow the unkindness of others to dictate what I do or do not write here.  It's hard - I tend to take criticism very much to heart even if it isn't warranted, and I shed a lot of tears over what was said here.  As a result, it makes me afraid to share things which could incite further criticism.  I'm not going to give in to those fears, though.  I'm not taking down the donate button, info about ordering bracelets/magnets, etc.  I'm not going to take down Noah's wish list.  Having these things here is FAR easier than repeatedly answering individual emails requesting this information.  I don't think they are inappropriate and I won't remove them simply because a reader expresses dissatisfaction with them.

I am very sincere when I say that I'm happy to answer sincere, genuine, courteous questions as time allows.  I'm not blind to the fact that I am human, and fallible, and I don't want to immediately discard constructive, well-meant, gentle correction because it may be that I need to be corrected at times. 

It's an honor to have so many dear friends visiting here, and I hope that this blog can remain open and available to anyone who wants to come and visit.

Blessings,
Kate