What I want for Christmas

The other day I was asked the question 'what do you want for Christmas?'
and I said hmm I don't know I'll have to think about it.  Today sitting in the hematologist office the answer came...  I want this illness and all it entails to take a vacation.

The reality is no illness takes a holiday. In 2003 the holiday season started 
with Cody spending 10 days in the hospital at Thanksgiving. Last Christmas Hannah could barely walk without feeling faint. This week we are battling with the insurance company once again over medicines.

Illness doesn't stop because you have special plans or a lot to do. We have
sat out of many holiday activities just because of no energy for said celebrations or just too many germs floating around to be exposed to right before an infusion. Everyday seem to be a new fight, with some good days and some bad.

Today was a day mixed with good and bad. The good news is Hannah's iron
levels are holding steady. Which means the Actemra is helping to keep the disease in check and resulting in less anemia. After a crazy busy exhausting yet thrilling show week this is a victory and praise report. But.. In my last post I said Lucas was switching to the new infusion medicine Actemra, well insurance is refusing this until he has tried Remicade. Remicade is a med we have tried to steer clear of it has more side effects and risks but does work wonders for some people and with the psoriasis patches Lucas has been 
experiencing may be a winner.

We have to have another Orencia infusion at home, and we had already 
been discharged from home health because of the medicine switch. Then
the first 2 Remicade infusions must be done at Hershey.. chance of a 
reaction are very high with the 2nd infusion. So after those two then we can switch to our local hospital and not have to play "Rock,Paper, Scissors" on
who gets to try and take off work to hang out with our sweet guy at the 
hospital. Oh and its January these two infusions are scheduled for so we 
work around bad weather and again have to be hyper vigilant to avoid infections.

I am not likely to receive my Christmas wish of a holiday from this illness,
however a line from Sundays teaching has been a lifeline on days like today "God won't always keep you from trials -but He'll always keep you through
trials".

We are learning to not grieve the things missed but to take joy in the
opportunities we are able to partake in.

Be joyful in hope...

         

       Be joyful in hope, patient in affliction, faithful n prayer. Romans 12:12


  Its dance rectal week here in the Lauffer house. It will be a long and yet
rewarding week. Two nights of practice, two dress rehearsals and two performances... so yes a long week. 
  In order to be able to dance like this:

   This has to happen:

   It's a joyful month as we celebrate Christmas. We celebrate in defiant 
hope. Circumstances are not always joyful. This is a three possibly four 
infusion month. For the past year, we have been able to have biologic 
infusions for our two youngest in the comfort of our own home. While
 this is not always easy, it means a little less running and juggling for mom keeper of all appointments. This month we changed biologics from Orencia 
to Actemra for both kiddos.
   Actemera cannot be done at home. Bloodwork has to be done before the 
infusion and IV prednisone and Benadryl must be given ahead of time. It
is a bit more dangerous so we have to have them done in the hospital.
Hannah had one this past Sunday and will have another in 4 weeks on the 
30th. She may also have to have an iron infusion that is pending the
iron panel results.
   This month Lucas switches to Actemra as well. Which means we are going
to become fast friends with the nurses on the pediatric floor of our local hospital.
   On this journey, we are traveling we deal with two types of people. Those 
that will tell me I don't know how you do it you are so strong (believe me 
when I say I am far from strong - but you do what you have to do
especially for your children) and those who know what we are battling daily and think we are overreacting. Both are hard to respond to... I am not brave and I don't feel very strong I don't want to be put on a pedestal. But until you've juggled my schedule or cried and prayed over medicine changes, side effects etc. be overly critical either.
     We celebrate a defiant hope. I think I've shared this passage before but I am going to share it again because she says it so much more eloquently than I and it speaks to me so much right now. 

"This is not the way it’s supposed to be. All this sadness and bad news and dying. All these anxious phone calls, wars, scary test results, car accidents, terminal diagnoses, ruptured marriages, dogs with cancer, infertility, prodigal children. We hate it, not only because it all hurts like hell, but because eternity itself is encoded in our hearts, telling us that things should be different—in fact, will be, someday. But that doesn’t seem to help much when we’re staggering beneath the bereavement of the way things are. Of course, we feel this way—of course.But it’s only when we bare our hearts to the pain of this brutal paradox, that our hearts are fully open to the beautiful mystery: God sent His Son right into the very middle of this mess. He broke His centuries-long silence with a baby’s cry. Almighty God became helpless, humble, vulnerable to the hurts and evils of this world, so that we—and our hurts into the bargain—might be redeemed. What on earth does redemption mean but to get back all that is rightfully ours, not because we’re good enough, but because we’re loved enough. Not because we deserve it, but because it’s the way God wanted it to be all along. The story is clear all the way through the Bible: God doesn’t want our sacrifices and our stuff—He wants our hearts. And I believe that He is gathering up everything that has ever broken our hearts to make it all right again in our redemption. I don’t claim to know what that means, particularly this side of heaven. But if there’s one thing I’m not afraid of (and, believe me, there are plenty of things I am!), it’s that God will turn out to be less loving, less good, less tender than I always hoped He’d be."-Lanier Ivester

  My hope for you all this Christmas no matter what you are going through is
that you would know that God is not limited by appearances or bound by our circumstances. And my friend if you’re hurting this Christmas, know you are beloved of a God whose special concern is the brokenhearted.