On the Verge....

For the past five weeks hemophilia has been the focus of our lives.  Yes, I have two sons with hemophilia and it is in our lives everyday, but when your son has an active bleed that will not get under control and you are in the hospital, it becomes your life.

My "Christian" was discharged yesterday after a lengthy stay, and to say we are joyous and full of thanks is an understatement.  But this evening he looked at me and said "my knee hurts."  My blood pressure went through the roof and my heart is still in my throat.  I jumped into action with a dose of pain meds, ice and elevation and his scheduled infusion is running as I am writing.  I called his doctor and he wanted to increase his factor a bit so that is what we are looking at for now.

When my son is recovering from a bleed it's like watching a pot of water and waiting for it to boil.  I know I can't live like that, but right now that is where I am .  I am making myself crazy!  My anxiety is taking over and I truly feel sick.  I just can't breathe.

I've been living with a bleeding disorder in my home for over 17 years and for the first time ever I feel like I can't go another step.  I know I have to….but it's how I feel. 

I don't want to melt down but I think for the first time I've understood how people do get to the point of breaking down. 

I'm embarrassed to feel this way.  I am a pastor's wife, have a ministry of my own, am a cheerleader in the corporate world for the team I work with and am known as an encourager and one who champions hope.

But the bottom line is...I am human.

When the Lights Go Out

Tonight my sweet "Christian" had some trouble with his infusion of factor and needed a dose of IV Benadryl.  Unfortunately he developed a pretty serious headache and was in quite a bit of pain, so he took some Tylenol and we turned off all of the lights and electronics in the room.

The only sounds were from the sterile water for the oxygen bubbling in the background.  And the only light was shining from the pump and monitor.

I didn't know how to help him with his pain but knew I needed to distract him so I started to talk about my trail riding adventures with my friend "M".  I told Christian about the skull of a dead animal we found, how the dog that accompanies us chases the rabbits and I went into detail about each of the horses at Ms. "M"'s corral.  He was engaged, asked questions and is looking forward to meeting the horses and feeding them carrots.

Nighttime can be scary.  It's when you watch the oxygen and heart rate numbers on the monitor as your child is sleeping and you wonder why the numbers fluctuate...your anxiety can consume you. 

Nighttime is also a time when your mind can wander and you start to think the worst...I mean the absolute worst.  You go places in your thoughts that you have no business going to and you work yourself up into thinking about the worst case scenarios for your child.  Then you lose sleep and feel yucky the next day.

Nighttime can also be a time when you get filled with questions and you want answers and you are not able to meet with the doctor until the next day. 

But what I am grateful for is that the morning will be coming.  Things will look fresh and hopefully we will be blessed with another day filled with continued healing and answered questions.

Most importantly we have the chance to see our child in a "new light" and we continue to do everything we can as caregivers to make sure that the most is made of each day in finding a solution to a bleed and provide some well needed relief...even if it's through a story.

Thank you for asking

My "Christian" has been in the hospital for 17 days as of today.  It's been a long, extremely difficult haul this time.  Family and friends are constantly calling, texting, and "Facebooking" to check on him.  But today someone actually asked, "How is 'Lance' doing?"  My 17 year old Lance also has Severe Hemophilia and has been extremely blessed to not have complications.  But he struggles with the family through Christian's bleeds and hospitalizations.

My husband and I try to keep life as normal as possible for Lance by keeping his school and rehearsal schedule as unaffected as possible.  And for the most part it is uninterrupted. 

But what most 17 year old young men do not have to do is help hold their little brother down as his port is being accessed. 

Most 17 year old young men are not carrying their brother up and down the stairs because his little brother can't walk because of a bleed. 

And most 17 year olds are not nearly as compassionate as my Lance because when his little brother hurts, he hurts too.

Our children with chronic illnesses grow up at a different rate than most.  Maybe it's not obvious because they truly are goofy kids, but when it comes down to what matters most, they are heads and shoulders above most.

Thank you, for asking about my Lance.  He matters too.  Don't leave out the brothers and sisters, they are also on the journey.