The Hardest Part

Home two days now and we've been showered with gifts, pampered with presents and blessed with visits.  We even managed to pull of an impromptu birthday party complete with balloons and an ice cream cake!

Our patient is recovering well physically.  He finishes his Tylenol with codeine tonight....and he hasn't complained of any pain all day!  It's so incredible!

As for our activity level......I was ok moving him around the first few times, then I tried to get him off his bed and I ended up straining something in my back. Now I'm trying to be super careful about how I lift him up.

So we conquered the mobility factor, then we moved onto the potty side. 

We were all pretty nervous about his first BM.  'Butt' even that milestone passed without great fanfare! (ahem- sorry I couldn't resist!)

Jarrod and I practically shook hands as we exclaimed,"This is EASY!"

(well of course it was for me, since Jarrod was home for the weekend and he stepped up to do MOST of the hospice while I planned birthday parties and took down Christmas decor)

So although our new reality included sponge baths, and round the clock medication doses....it still seemed doable for us.  Then I started watching Merrick for signs of wear and tear.

Now you have to know something about Merrick.  He is SUPER touchy-feely and lovable.  He is the classic middle child who initiates play with each of his siblings.  He bounces, he jumps, he is VERY physical in his play...whether it's sword fighting or wresting....His requests to play this or that, are unending.

Well, now he is very limited to what he can play and where he can go.  He is able to wheel himself around but is hindered by the size of his wheelchair and the narrowness of our hallway.  With the leg rests extended, his chair cannot go into any of the bedrooms, instead we have to carry him there.

I qualify all of this because we have had several visitors in the past two days and the results have been mixed.  Normally, when kids come over they walk in the door, greet our kids, and then the pack runs off to play.  No self-respecting 6 year old is going to hang around 'just to chat.' They are doers....not talkers. 

So several times these kids have come in, they hand Merrick a present and then take off with Ian to play.  Merrick looks at me pitifully and says, "Please carry me to them...."

It is not impossible to move him, but it is certainly not easy.  So I watched as Merrick was ditched by the same people who came to wish him well. 

Not on purpose, of course, but in his mind it was just as frustrating!

Then today he burst out crying.  He had created a game where he would block the hall or walkway with his wheelchair and then ask for a password from anyone trying to go by.  His brother and sister had tired of the game and had started to just crawl under his wheelchair.  This frustrated him to no end.  We answered to cries of "Mom, they aren't playing right!" and "They won't listen to me!" all day long!

He started to pound on his cast in frustration.

My heart ached for him. 

I could see that he was trying to control his environment the only way he knew how.

We had prepared so many things for this recovery period; ramps, clothing, schedules, etc. 

But we weren't prepared to cope with so many emotions.

I suddenly felt so much compassion for those who raise disabled children.  I can't protect him from the world.  I cannot buffer every interaction he faces. I can only love him and reassure him and help him to become self-sufficient. 

So today I challenged him to use his words more.  I also made him stretch; to reach a little further and try a little harder if something was just out of his reach. 

I made sure he was safe, but did not want to enable him beyond that. 

The Dr. was very clear that he will be crawling around, dragging that cast behind him before I know it.  And that is very normal once the pain of the surgery has passed.

Man, I feel like we have so much to learn. 

Yet, as a sweet friend reminded me, this will soon be over, 4 weeks is really very short.

So it's not the boredom that I'm afraid.  It's the scars you can't see.  The ones God wants him to work through, that I desperately want to protect him from.   I'm sad for him when his friends want to go ride their bikes and he is stuck on the couch. 

Yet, I know that this too holds a purpose. 

So be it.

And now you know the hardest part is the part you might miss if you weren't looking for it.