And the coughing begins...again

 I sit here this morning, mouth burning, deep throbbing, pressing an ice pack to my face, after a difficult extraction on Tuesday.  My hormones are raging,  I haven't slept through the night in I don't know when because of sickness and/or pain.  I'm feeling a bit grumpy.  (is it obvious?) As I type, Lillian coughs.  She started coughing on Tuesday.  I ramped up her treatments on Wednesday, it seems to be helping.  As I mentioned in my previous post, I'm just not my best self at the moment.  My thoughts shift to a friend whose son's body is losing its earthly battle, my friend with MS is crippled in pain and has been for years, another friend is struggling with an aging parent.  Another friend stuggles with serious health issues and watching her husband's mind slowly deteriorate due to the cruel disease of Alzheimer's.  A missionary we support has buried a brother and father in the last three weeks.  Life is hard.  I ache for them and many others.  

 I read an article this morning from Key Ministries.  It is a group dedicated to caregivers living with special needs parenting.  It was about the sins we, I face, being a caregiver.  She listed the top 4.  They were, discontentment, envy,  pride, and ungodliness.  Well, let me tell you, I was a little shocked when I read the title.  As I read, though, I could see how some of these issues applied to me.  Envy and discontentment. Shots fired.  Raising my hand. ( Now let me back up a moment.. I have a few friends who have seriously shared their souls on facebook.  Sharing things that were honestly, quite shocking to me.  My thoughts have been,  I don't think I could share that with the world.  ) Well, here I am world, sharing my sins.  The Lord showed me many months ago my sin of covetousness.  I confessed to him, now I'm sharing with my fellow believers so you can hold me accountable in the future.  I do struggle with envy and discontentment.  Not all the time and not often but sometimes it burns through me.  And as I sit here, in not my best self, grumpy, self pitying, tired of hurting, stressed with a potential illness looming....tears sting my eyes.  Forgive me, Jesus.  Holy Spirit rise up in me and conquer all these things.   

Pray for us.  Pray that Lillian does not get sicker. 

 After a very rapid string of events, my husband with be having a heart cath in 6 days with a strong possibility of stint placement.  Of course, as murphy's law would dictate, they scheduled it the day of Lillian's next infusion.  While I can see her Crohn's symptoms increasing,  her infusion will have to wait another week.  Well, you know what ?  Murphy can have his law, because I have Jesus and that's all I need.  Thanks for hanging in for this hodge podge, somewhat jumbled mind dump I've created here today.  Keep us in your prayers as I know you faithfully do.  God is good.  

A rescue : a day in the life

So, Friday started out like any other day.  Getting up, getting lunch ready for Ezekiel and just the morning routine.  I had time, this particular morning to get Lillian's feeding in before we left for school.  She was upstairs playing. I called her to be fed and her newest response is, "ah berighdow" translated, I'll be right down.  Five minutes later, I call her again, same thing, "ah berighdown".  Five minutes later, mom voice "Lillian it is time to feed you, come down!" She trots down and begins to cry, telling me she's mad at me and telling me not to talk. I am used to this.  This happens more often than it doesn't.  I know this.  But, this day, I was just frustrated and tired of it.  She tries to get as far away from me as possible, but that's a problem when she's connected to a feeding tube.  We get in the car, head to school, drop off Ezekiel, and head home.  I *think* there is probably enough time that I can speak to her and she refuses to speak to me.  Again, I know this, but it gets old, and tiring, and somedays, I'm just not my best self. I call my oldest daughter and tell her I'm dropping off the sullen teen she ordered.  She laughed.  We came on home.  An hour later, big sister comes to the rescue.  Picks her up and they had a fun, sister day.  She hung out with Bethany and Bon Bon (Bethany's neighbor).  I'm expecting her back when Bethany picks up E from school. Bethany happens to mention lunch in front of her and then she wants to go to lunch.  So, she has gotten herself a lunch trip with Bethany's family and mother-in-law and sister-in-law.  As soon as they arrive at the pizza place, Lillian tells the MIL,  she's there for lunch because she's tired of her mom.  HA!

Basically, Lillian spent the majority of the day with Bethany.  They had a fun day.  Bethany even gave her a bath.  She rescued us both.  I'm rarely, very rarely alone.  I read my bible and prayed out loud.  It was even a sweeter time with the Lord.  

I'm grateful for my adult kids and the love they have for each other and the kindness they demonstrate to their littler siblings.  Whether they know it or not, that blesses me beyond measure.  

Saturday Shenanigans?

 Not good ones, either.  My son played a basketball game this past Saturday and my mom came up to watch.  The game went as planned and my mom took us out to lunch. We had just finished up eating lunch and Lillian sneezed.  About 20 seconds later I saw blood on her lip and thought she bit her lip.  Turned out to be a gushing nosebleed.  She's never had a nosebleed before. So, I perform basic first aid, get ice from the waitress (after I pulled what was left out of my cup) and pinch.  Blood is just soaking through to my finger.  Mom starts timing and this thing is not stopping.  After at least 15 minutes, I reach out to our dr who instructs me to do what I'm already doing and proceed to the ER in 10 minutes if it has not stopped.  The bleeding started to slow but was still coming.  So, after another 15 minutes, it finally stopped.  Mom was looking stressed; I was feeling stressed.  I prayed over her multiple times for the bleeding to stop because that's what I do.  Things like this, for Lillian, are just not ordinary things.  I was internally shaky and nauseous afterward but extremely grateful it stopped.  Mom hung out for a couple hours which was a blessing.   I contacted her Hematologist that day and let her know what happened and if this type of bleeding would be considered normal...I mean, I don't know these things.  She directed to take her to the ER if there was ever a bleed lasting longer than thirty minutes (in the future).  We also got the results from her genetic blood test about Von Willebrand disease, and it is negative. We are still planning a repeat platelet function study test in the next 4 weeks to see if that test comes back normal this time. This girl keeps her mom on her toes for sure.  

Just another little peak into the life we walk.