The Carpool Line

I never thought I would be excited to wait in line to drop off and pick my son up from school.

Yes, the carpool line….I am thrilled to be in the carpool line!

A year ago my son was in the hospital and has been wheelchair bound until recently.

My "Christian" has been fighting like I've never seen a little boy fight to walk without needing his wheelchair.  Despite the damage to his knee and the hitch in his gait, nothing is holding him back from keeping up with his friends.

He even told his dad that he was ready to sell his wheelchair ... I don't think we are quite ready to do that :)

My son can walk into his school on his own two feet.

He is walking up and down the halls of his school.

He is eye level with his friends.

I don't need anything for Christmas this year…..I've already received the greatest gift ever…to be a mom in the carpool line once again.

Zero is my favorite number

Today is huge!  As of this moment, my "Christian" has severe hemophilia!

Why the excitement?  His inhibitor (the bug that eats up the clotting factor he needs) is registering ZERO!  For the moment, it is gone.  No inhibitor!

This inhibitor battle began when "Christian" was 11 months old and he turns 9 in January.

In the inhibitor community we know that it is not always best to concentrate on the numbers and levels associated with the inhibitor.  But you know, even if it's only for a short season at zero, we are going to celebrate and not let the fear of the inhibitor returning steal our joy.

No joy lost here! 

No fear here!

I know that living in fear is debilitating. There are people in our community that have only known inhibitors for years upon years and they don't know if they will ever be inhibitor free.  My heart breaks for every person that has been on this path despite the length of time.

It is not easy.  But having hope for zero and having hope that treatment will continue to improve is sometimes all we have.

Today is a great day. 

Inhale...Exhale

It has been a long time since I have been comfortable accessing my son's port.  For the past two years he has been dealing with PTSD and a port that just didn't work well.  He would put up a physical fight and be in hysterics with the whole process.

 

Inhale.

Now, my son is in a different place and accessing has become routine.

When you have been accustomed to having a certain amount of control with accessing a port or a vein and infusing when needed if you lose that ability and it is devastating.  You feel lost.  I am not a control freak but I do like to know that I can handle things.  And when my son is having a bleed and I have to depend on someone else to access his veins, it is stressful and scary.

His new port is working great!  He is cooperating and has a sense of control.

 

Exhale.

I knew this time would come and there are moments I think back to even just a couple of months ago and realize that our world was completely different! 

Things can sure change quickly.  For months and months we struggled with his treatment and now that we are on the other side and able to breathe a little easier it's almost like a dream…a really bad dream.

You just have to hang on. 

Tight.

And never let go.

Lucky Number "6"

 

 

Port #6 has arrived and is 10 days old! 

 

Friday my husband accessed it for the first time and he said it was impossible to miss.  What a relief!

 

We have had so many problems with "Christian's" port and the fact that he struggles with a horrible fear of needles does not make infusing easy.  Having a new, higher profiled port was the only answer and I am so relieved that it is healing beautifully.  I am looking forward to accessing the port within the next few days.  It has been at least two years since I have been comfortable accessing my son.  It has been hit and miss but having lost a great amount of "control" over my son's care has been difficult.

It amazes me that ten days ago my son had surgery. He spent the weekend playing in his new "Ninja" costume and tonight enjoyed a leisurely bath without his port accessed…completely free of a needle :)  I don't think I would bounce back as quickly…most adults don't. 

Surgery is serious stuff.  It's never "routine".  When you send someone you love off to surgery and they are loopy from the medicine or already sleeping, the seriousness sometimes does not set it quickly.  Last week my son cried as he was wheeled away from me and his Dad.  That's never happened and it left me doubting the choices we had made. 

Often times those of us affected by chronic illness seem to shrug off the seriousness of a situation.  Maybe it's a defensive mechanism…or just plain fear.  It's almost as if we become "numb" but not because we don't care, it's because we care so much that it physically hurts. 

We move forward trying to make the best decisions we can with what we have…that is all we can do.  Don't doubt yourself.

Sunday Morning

Most Sunday mornings you will find me in church…but not today.  My husband and I were not able to access "Christian's" port on Saturday evening and when we spoke to the doctor on call, we decided to skip his dose of FEIBA.  He was not bleeding and not in a critical situation so I planned on taking him to the emergency room the next morning to get an IV started.  His port was aggravated and with his history of difficult access with #5, we thought it best to give it a break.

In my fairytale mind I was thinking we would walk in, get a line started and make it back in time for Sunday School, or at least the second service.  (It's never been that easy before, but there is always a first time….right? I was just trying to be positive.)

Two attempts were unsuccessful and the third attempt was made by the "Ultrasound Squad".   You know, the ones who come in with the ultrasound machine to find the veins that are deep.  They use the ultrasound machines for people with difficult veins, elderly folks whose veins are very fragile and kids like Christian who are just hard sticks.

Fortunately they were successful and my son has an IV for the next few days until we can meet with the surgeon to figure out what can be done to get #5 in the right place.  I am hoping it is a matter of going in to suture the port more securely….or something like that.

When my Christian is in the hospital setting and a needle comes his way, his PTSD is raging.  He can get to the point of being still but his fear sends him out of his mind and he screams and cries unlike anything I've ever heard. 

Sometimes I am in the room, other times I am right outside the door and most times you won't see a tear on my face.  I walk away from these times wondering how in the world I can be devoid of feeling?

Truth is, my feelings are there.  I am devastated, sad, angry…every emotion in existence is flowing through my being but my son needs his factor and the only way to administer it is through a vein.

If you are watching a parent endure something awful with their child and you don't "see" what you expect, keep in mind that you never know what is going on inside.

That parent may not be shedding a tear because they are screaming prayers in their heart and mind to the One they believe can bring peace.

Perhaps that parent has been up for hours on end and is so exhausted that they can hardly stand up.

Maybe that parent is worried about their other children or loved ones at home while they are on "hospital duty" and are on their last day of paid leave from work…or are looking forward to getting back to work to "rest".

What they have been through is probably more than you will ever experience in your lifetime.

On this Sunday evening I am sending out my good thoughts, energies, and prayers to those families in the hospital with their children.  They sit and watch as they are not able to take away the pain and do what they can…love.