Managing fear vs hope- first weekend post IVIG#2

Now that we are two months in to IVIG treatment, it is getting harder and harder to not look for signs of recovery.  This first weekend post, we have seen some great things.  I took the boys to Toys R Us to pick out a little "prize" for doing such a great job at the hospital while Paige was at soccer camp.  Toys R Us was closed when we arrived at 9:30, so I explained to the boys that we had to drive to my office first and then come back.  Normally, I would have had a blow-up, a taking the shoes off, crying "I want to go to Toys R Us!!!"  Friday, however, it was "OK, when do they open?"  Peyton actually had a harder time with driving away from the parking lot than Hunter did.  When we came back, the kids ran throughout the store trying to pick the perfect toy.  I told them they had $10...kind of hard for a 3 and 5 year old to understand as they grabbed $50 toys off of the shelves.

so hard to say no to this little face...

Hunter really wanted "Tractor Tipping," but it was more than my allotted amount, and as hard as it was to not give in to this little boy who went through a week of hospital infusions, I had to stick to my guns.  He asked if he could just carry it- and believe it or not, he put it back when we checked out.  Amazing.

 

Hunter found a McQueen Easter egg by the checkout, and I told him I would get it for his basket.  Peyton saw it as we were leaving and started crying that he wanted an egg..I had to get to Paige's pickup, so I told him I would get him an egg next time.  The child must have broken down in tears fifteen times in the 20 minute drive.  It was a good reminder that even normal kids can have those type of OCD, whiney, incessant tantrums.

 



We picked Paige up at soccer camp after the store, on a very cold, windy morning, and typically Hunter would have run away, screaming, darting to the car...but he sat with me and watched Paige finish her mock game, get autographs from the coaches, and say goodbye to her friends.

Paige got MVP 3 times in the week-long camp!

 The weekend was pretty uneventful- we received a fun package from Grandma Sue- a cozy, handmade blankie and several books and crafts.  No games were scheduled due to spring break, and the rain made it a fun, relaxing weekend.

 

Today we decided to keep Hunter home from school- we just sent him on Tuesday/Thursday last round to give him a lower student ratio and rest a bit more.  I took the boys to the natural food store after dropping off Paige at school and Hunter absolutely refused to get out of the car.  I had Peyton out, the cart cover on, my list in hand...and he would not get out.  He climbed to the front seat, and even as I attempted to "pull" him out, he resisted and went the other way.  I don't like to use threats with him, but today going to the store wasn't a want...it was a need.  We were out of the key essentials.  So I told him no electronics if he didn't get out...and he once again ran to the back and buckled his car seat.  I finally gave up after fifteen minutes of this nonsense.

 

I was SO frustrated.  I told him on the way home that he was to go straight to his room when we got home, and he was to sit.  I half expected him to run in the house and plant himself on the couch, like he usually does when he is resisting a time out or a demand, but he walked right up the stairs and sat on his bed.  He reappeared several times, frustrated, crying, but I marched him back up and kept the punishment.  He is old enough and smart enough to get it, and there was no physical reason he couldn't get out of the car today.  I looked at all of the extrinsic factors- it wasn't too cold, wasn't windy, he had comfy clothes on, he slept 11 hours last night...everything that I could see and sense appeared to be fine, so the root of not getting out of the car, to me at that point in time, was that he just didn't want to.

 

We had a good chat after he cooled down and I asked him if he wanted to go back to Sprouts.  As much as a beating as that sounded to pack up again and do it all over, I firmly believe in second chances.  I have been preaching to Hunter for awhile now that he can "turn his day around." 

 

So he deserved a chance to do it over.  And he did fabulous.  No complaints, no issues, no fits when I told him no candy...picture perfect. 

 

After we got home, I was thinking about the events that transpired that morning and how upset I was with myself for getting so frustrated with him...because I realized that the frustration didn't truly root from him not getting out of the car...

 

it was from me thinking I shouldn't have to deal with this after two week-long procedures of IVIG.

 

How horrible is that?? We are trying so very hard to not look for changes, but getting further and further into treatment brings with it the anxiety of the realization that it might not work.

 

It is so unfair for me to judge progress three days post-IVIG.  We were told not to expect changes until round three, and here I am cursing IVIG for not letting me go to the darn grocery store.

 

Even if we didn't have bread, eggs, cheese...would we have made it until tomorrow when the kids are in school?  I had a plan, I made a plan, I had to follow the plan... the internal stress of having the fruits, the veggies, the healthy meals for our children...if I didn't get to the store, I'd have to change my plans! 

 

Could I have found something else to substitute in our pantry?

 

Could I have compromised?

 

By all means, yes.  But the reality of the moment was that the stress of wondering if all of this treatment has worked took over and my "plan" fell apart.

 

Fear was overtaking hope.

 

I am afraid. 

 

I am really, really frightened that we are going to get to the end of our three months and not see a change.  Insurance will drop the treatments, and we will be at the end of our "plan." 

 

I don't want to compromise at this point in our lives.  I don't want to give in and accept a substitute.  I love our sweet boy more than words, but I would give anything to have him back. 

 

Hope needs to step up its game.

 

 

Broken Hallelujah- The Afters

http://www.youtube.com/watch?v=Fo3DudOzV4k

 

I can barely stand right now
Everything is crashing down
And I wonder where You are
I try to find the words to pray
I don't always know what to say
But You're the one who can hear my heart

Even though I don't know what your plan is
I know You're making beauty from these ashes

I've seen joy and I've seen pain
On my knees, I call Your name
Here's my broken hallelujah
With nothing left to hold onto
I raise these empty hands to You
Here's my broken hallelujah

You know the things that have brought me here
You know the story of every tear
‘Cause You've been here from the very start

When all is taken away
Don't let my heart be changed
Let me always sing hallelujah
When I feel afraid
Don't let my hope be erased
Let me always sing hallelujah

Hallelujah
I will always sing
Here's my broken hallelujah