Words fitly spoken

Once again, I'm sorry for the delay in blogging.  Some of you asked last time for a link to my FB - it's http://www.facebook.com/kate.estes .  I've been quiet for a couple of reasons.  One is that our internet has been spotty for some reason and it's making it hard to get a whole post written.  I've tried to post snippets on FB, but have been having fits trying to blog (our internet is resetting every 2 minutes or so . . . grrrr). 

Second, I've been fighting a really, really miserable cold for two weeks.  I'm barely sleeping because of all of the coughing, and when I'm awake it's hard to slow down and sit long enough to blog.  I finally went to the doctor today (just couldn't find the time any sooner) and found out that it's actually bronchitis that was on the verge of becoming pneumonia.  I got a shot of predisone and a fistful of prescriptions and am hoping to feel much better much soon.  I'd sure appreciate prayers for some solid sleep!!

There isn't much earth-shattering news about Noah.  He's tired.  He's playing less and spending more time resting, especially if he can snuggle with someone else.  He got a hospital bed about a week ago, and it's been a huge blessing.  It makes it much easier to care for him, and he is so much more comfortable since he can adjust the bed to his needs. He needs care almost constantly:
* Buccal (in his cheek pocket) oxycodone every 2 hours.  When I give the oxy,  I also need to change his diaper, assess and log his pain, assess and possibly change his farrell bag (stomach drain bag), assess, clean, and treat his g-tube stoma for drainage and irritation, and untangle his lines.  This all takes quite a bit of time, and it is SUCH a blessing to be able to raise his bed up rather than bend over for all of it.
* IV meds given all through the day - one is given every 8 hours, two are each given every 12 hours, one is given once a day, and two are given as needed.  Giving these meds means stopping his TPN pump, then coming back in 30-45 min to restart it or hook up the next drug.
*His farrell bag needs to be changed a couple of times a day, his broviac dressing changed a couple of times a week, and he has a patch that is changed three times a week.  It irritates his skin pretty badly, so changing it involves removing all residue with adhesive remover, washing the area well, and applying hydrocortisone for a couple of days after each patch is moved.  His g-tube area is draining and irritated, so it needs meds and care a couple of times a day.
*His bedding is changed at least once, often twice every day.
*His TPN is fixed daily, and daily we need to switch out his TPN and fluids.

That's on top of just plain parenting - getting him drinks, keeping him occupied, comforting him when he's hurting, playing with him, reading to him, etc.

I'm not saying that to garner any sympathy.  I don't feel sorry for myself, and there are a LOT of moms who are doing far, far more for their sick children.  I'm saying it because this life tends to be isolating and few people have any idea what's involved in caring for Noah.  I think that the "family with a gravely ill child" life is isolating for two reasons:

1. Most people don't have children who need this kind of care.  It's one thing to call a friend and ask for potty training advice or ask for child training tips.  It's another thing to call and ask questions about the things I spend my days doing for Noah!

2.  People don't know what to say or what to do.  I want to be clear - I would NOT know what to say to someone who was dealing with a very sick little boy if roles were reversed.  I totally understand why it's hard, but I also know that I'm not the only mom who feels isolated in this way, so I thought I'd take a few minutes to share about this.

*It's OK to say that you are sorry, or that you are sad.  It's OK to empathize and tell me that this must be hard, or that this must hurt, or that you wish this weren't happening.  It's also OK to say that you don't know what to say!  When people make a point of NOT saying something, it makes me feel even more isolated.

* It's OK to cry, and it's OK if I cry.  Trust me - you aren't making me cry, and you aren't making me sad.  I cry every day and I'm already sad.  It can be helpful to cry with someone else who cares about Noah and about our whole family, and it is healing in a way to know that other people care deeply about him as well.

* It's OK for me to NOT be sad all of the time, and I need to feel safe smiling and laughing when that is what I want to do.  I have so, so much for which to be thankful, and so much that makes me smile.  Noah is a very dear, very funny little boy and his siblings are just as dear and funny and loving.  We cry, but we laugh too.  We play games.  We watch silly movies.  We make pizzas together.  We live.

*It's OK to invite me to do things.  Noah is relatively stable, and every one of us is thrilled if we get invited out for lunch or coffee, or over to a friend's house.  Yes, Noah needs a lot of care, but he loves to get together with friends as much as we do.  Jeff and I can trade off responsibilities pretty deftly, so unless Noah has a doctor's appointment, we're generally each available for special time with a friend or two.

*It's OK to reach out to our other children. Hannah has been tickled pink lately to have been invited to spend time with some of the ladies in our church.  It means the world to her, and it would mean the world to any of my children just to spend some time with a friend - especially an adult friend who can offer a listening ear.  They would love it if you offered to bring them along when you're running errands, or invite them over to bake cookies, or take them out for a soda/coffee/ice cream or something.  If you have children their age, they'd love to come play.  Once or twice we've even had all of the children blessed by  friends showing up with a couple of cartons of all-natural ice cream or a board game or DVD - little gestures that mean the whole world to our children.  Just like Jeff and I, they appreciate being given room to laugh or to cry as needed, and they are so blessed when someone acknowledges that they are walking a hard road right now.

*Please don't tell me that God doesn't give us more than we can handle.  I just don't see that in His Word.  I do see that His strength is made perfect in our weakness.  I believe with all of my heart that He DOES give us way more than we can handle, and then He steps in and carries us.  I am not superwoman.  I am not stronger than you or more capable than you.  I'm not living this life because I am some kind of hero - I'm living this life because I have no other options.  It can be very awkward when people try to put me on a pedestal and assume that I am more than who I really am.  I'm just a wife and mommy, just like you.  I get tired and I get discouraged.  I get impatient sometimes.  I feel whiny sometimes.  I get overwhelmed sometimes.  I don't have a red cape. :-)

*We always appreciate it when people offer to help, but please understand that if you say, "Call me if you need anything," or "Please let me know if there is something I can do," you probably aren't going to hear from us.  :-)  It is hard, uncomfortable, and honestly unrealistic for us to call people whenever we need something.  It doesn't cross our mind to start calling friends with a wish list, and even if we know you want to help, we don't want to ask for something you didn't really mean to offer.  (For example, right now I could personally help someone by lending an older teen to watch her little ones, sending over a couple of boys to do yardwork, or sending over some homemade bread.  I couldn't meet a financial need or devote an entire day to helping.)

  If you want to help, there are plenty of ways to do so, but we are usually so tired and overwhelmed that it works best if you simply call/email and tell us that you want to bring a meal, bring a restaurant or grocery store or Walmart gift card, that you want to put gas in one of our vehicles or get the oil changed, or come over and help here in some way.  It would even help if you said, "I want to meet a need for you.  I have this much $$ or I have this much time, and I want to know what I can do to help with that $ or that time."  Even that gives us permission to really ask, because we know that what we ask falls in the parameters of how you really meant to help.  "Either or" offers are always a blessing and very easy to accept.

I'm not saying that to solicit these things.  I'm saying it because we get lots of general "Please let me know what we can do" remarks.  We KNOW that you mean them, and we know that your intentions are good, but specific offers are much easier to accept.  If you ask if we could use one of the things I just listed, I'll say yes, but I won't call you to tell you that we need gas, or that I'm so tired that I can barely think about making dinner, or that nothing would be better than to sit down and visit over coffee.  I hope this is taken in the spirit in which it is meant.

*It's OK to ask questions.  Again, it won't make us sad and it certainly won't offend us.  When someone asks about Noah's meds or care needs or asks for more explanation about what is going on with him, we feel less isolated because we feel like maybe now someone understands a little bit better.  We had friends over for dinner a while ago, and Jeff and I started our nightly ritual of fixing TPN, fixing all of the IV meds for the next day, etc.  These friends expressed a genuine interest in each thing that we were doing, and it was a relief to explain it.  Please understand, though, that if you ask "How's Noah doing," we won't mind AT ALL, but we may get a deer in the headlights look and be unsure how to answer.  Chances are that you'll get a short, basic answer like, "He's hurting," or "He's tired," or "He's stable right now," simply because we don't know how much you really want to know.  We also don't know how much you really know already - we get thousands of hits on this blog many days, but only a handful of comments, so we don't even know who's been reading and keeping up with things.  Again, we'd rather have you ask how he's doing than to ignore the situation, but please don't be hurt if you get a short generic answer - and please feel free to ask for more details!

I hope that this is helpful, and I hope that you'll use this to bless other people who are going through a loss, impending loss, or difficult season in life.  I've spoken to enough other mothers of sick children to know that the feelings I expressed above are pretty universal!  I've seen similar lists written by other moms, and if you have something to add, please do so in the comments.

Again, we always covet and appreciate your prayers so much.  God has been very near to us, and I can honestly say that despite the exhaustion and despite being sick, I have had great peace lately.

Blessings,
Kate