Thursday, June 02, 2016


I was standing at the foot of my bed folding laundry that was still warm from the dryer.  I had called Blake in to join me so that I could talk to him about his upcoming birthday.

Admittedly, it was like my mind had unconsciously just blacked out that week on the calendar and I didn't even realize it.  Once I realized that it was three weeks away, it jarred me with the unexpectedness of it all.  

How had I failed to have it on my mom radar?  The weight of the oversight felt like it would crush me.  This was my son's birthday and I was his mother...and all these years I tried to never lose sight of the fact that when you are a child, you live for Christmas and your birthday.  There are all sorts of reasons this is true, and yes, I know gifts are one, but happiness and joy and being celebrated are all reasons too.

And I had failed to even think about his day of celebration.

I could offer up excuses.   For the past week, I have been trying not to think about the future at all.  The news last week of Steven's lowered counts, and the intensified fear of relapse, set me back to a place I hadn't been for awhile.  It's funny how it took me being in my bed with covers over my head, dreading the day ahead, sick to my stomach and fighting back tears and wishing I didn't have to get up, to realize how far I really had came in my recovery.


I started seeing a psychologist after returning home.  I needed somewhere to go with my pent up worries and fears and I knew that she couldn't take them away and that no one could, but I was willing to do anything that would help...and it sure wouldn't hurt.

After taking a "test" of very odd and random, yes-no questions, I was surprised with a few of my diagnoses.  Obviously, I was rated high on anxiety/depression.  That alone was pretty spot on and I didn't need that test to tell me that.  Not far behind, though, was PTSD and social aversion. 

The last week has given me perspective that I didn't have before.  Returning to where I was, reminded me where I had been and I had came a long way.  I didn't avoid going to the grocery store or Wal-Mart, or to a public place.  I enjoyed going to my kids' ballgames.  I would leave the house to go out and eat with family.

In fact, I had returned to work in January,  and had forced myself to act "normal" since then.  However, in hindsight I now realize I was acting less and less.

Yes. I had definitely gotten better, but each day this week has been a struggle and many days I went to bed feeling like I had lost the battle.  Letting my mind linger too long on the "what if" of relapse was enough to paralyze me all over again.  The fear of being separated from my kids and the fear of losing my husband had me regressing and returning to the place where I had once been before and I know my kids deserve better. 


As I folded a pair of Blake's jeans I looked at him and said with excitement, "So...what do you want for your birthday, buddy?"

He looked at me and his face grew red.  Then his eyes got glossy.

I knew what was coming and I started towards him.

"What?  Why are you about to cry?"

As the dam burst he shared that all he wanted for his birthday was for his "daddy to be ok". I told him that was all I wanted too, and that, right now, he was.  Right then, in that moment, his daddy was at home, and healthy, and active.

In an avalanche of emotions he released feelings that had been kept inside-probably some for almost a year and he spoke of how he felt like we "always" missed his birthday since Steven's illness. Even before I could gently remind him that only one birthday had passed since Steven's diagnosis, and that we had made it home from the hospital last year in time for it...or remind him that even though we had to leave the party early to go back to St. Louis that evening, we made sure that everyone stayed and the party went on, Blake, still crying, but in a wisdom beyond his ten years, realized all that himself and said..."It isn't that.  That's not what I meant.  It's just...I guess...bad memories."

And my heart shattered.

Because, oh, how I knew of the bad memories.  Suddenly, I wasn't so surprised that I hadn't thought of Blake's birthday.  That day...that painful day.  Blake playing outside, cake and presents sitting around, people laughing in the other room...and Steven sitting at the kitchen table telling me that he felt like his 113.6 pound body was shutting down on him and that he wasn't going back to St. Louis - because he wanted to just stay home and die.

Yeah.  Bad memories.

Although Blake's memories aren't the same as mine, and he doesn't know about his daddy's feelings that night, he knows that his daddy was so very sick.  He knows that we had to leave in a hurry.  He knows that we spent that night in St. Louis and that a few weeks later we found out that all that chemo that contributed to the physical shape my husband was in, had failed to completely kill the cancer because it was still alive and well.  He knows that the friends that were supposed to come over and celebrate his birthday with him, didn't, until August due to the fear of exposing Steven to illness.

My aching heart moved me and I picked up his 86 pound body that is almost as tall as mine and I carried him to the chair in my room and I rocked him.  And we both cried.  I assured him, without false promises, that right now, everything looked good with his daddy.  Right now, I didn't see any reason that his birthday wouldn't go off without a hitch.  However, I also told him that I can't promise that things won't change and, unfortunately, we both know how quickly they could.

And then God punched me.

Not really.  But He might as well have.  And I needed it.

I had been praying that I would come to clearly recognize God's voice, and yesterday it came through loud and clear...and it sounded a lot like my son's.

"Mom?  It feels like all we are doing is...just waiting."

Right there.  That's when He hit me.  Because the moment the words left Blake's mouth, I knew what he meant.  I have struggled with this since September 5, 2014.

I am waiting.

I am not living.

I am waiting.

I am waiting for something...some false sense of certainty, whether in the form of a cure or a death.

Isn't that awful?  How horrible am I?

Do not mistake those last two words of that statement for a wish.  If God was to take my husband from me, it would cripple me like nothing ever has before.  I pray and pray and pray for God to save my husband, and I pray again that He listens.  I am sick with worry in a way that many can never imagine, and so, I also ask you not to judge.

This false sense of certainty I long for?  I venture to say that you take it for granted too.  

I know that only God knows what tomorrow holds and we are called to trust Him, but this world, it lulls you into a false sense of security.  How easy is it to go day to day and just expect tomorrow for things to be the same?  Most people just take it for granted...

But now I never can.

I attend graduation and see pictures of kids and their parents and wonder if my husband will still be alive to see our children graduate.   A possible school trip for the next school year is being planned and my daughter asks if I can chaperone and go along and I can't commit because even in just a year our lives could look drastically, totally, unrecognizably different.  

How will our life look?  Well, that is anyone's guess.  

Where will we be?  St. Louis?  Home?  

Will we still be together?  In tact?

Sure, I have heard it before.  You could say that everyone's life bears the risk of trials and loss.  And they do, and you are right.  However, has someone told you that there is a 50% chance that yours (in the very near future) will?  

If so, then you know, all of a sudden, no decision is an easy one.

And so you find yourself sitting in the waiting room of life.

I don't believe that is where God intends us to be...or where He has put us.  


I asked Blake what exactly he felt we were waiting for.  I sensed I already knew, but I wanted him to tell me, and I didn't want to put words in his mouth.

I was a little relieved when he only voiced the positive, "for daddy to get better".

He knows, and I know, that we both know there is another side to the "waiting".   It had been only a few weeks before that he had asked me, again, how many years had to pass before we could feel more certain that his daddy wouldn't relapse.  I told him, "3-5 from the time of transplant and we are now eight months out".

He nodded.

That's too much waiting for any child to have to do.

He will be almost 16 years old (and Lakyn will be 18) when they get done waiting for "their daddy to get better".  

They will be so much older than that if he doesn't, and I don't mean their age.

The waiting has to stop.  I have got to force myself to stop it.  I never, ever would have believed that the kids would've picked up on this struggle, much less feel it themselves, because I thought I had came so far. 

Far isn't far enough.

The kids have wanted to go camping but my own "bad memories", associated with Steven's relapse last May, had kept me from it.  I never told the kids why, and despite their begging, I still haven't planned a trip this summer.  

I just keep waiting...and my waiting is preventing my kids from having good memories.  Good memories to replace their bad ones. 

So...with you all as my witnesses, I am vowing to try and wait no more.

I also challenge you to put aside anything that makes you hold back from living the life that you should, and the life that your kids need you to live, because your kids are growing up while you are waitingWaiting for whatever it is that you are waiting for.  I think most of us have something, and it isn't always as dramatic as a husband and father fighting cancer, but it is debilitating just the same.  God does not wish this for us.  I have got to find a way to give God this anxiety and stop pulling it back out of His hands.

I know that this will be a huge challenge for me.  My heart is in it, but when my mind is gripped in fear, my body follows suit.  And vice versa.  Logically, I can know what I should be doing and why, but emotionally, sometimes it all threatens to be too much.  And so I will pray more.  I ask you to do the same.

This year, this summer, I don't want to wait anymore.  I'm going to need your prayers to get out of this waiting room and out into life.  Please pray for our whole family.


1 comment:

Unknown said...

Your words speak to me on so many levels.. I'm constantly waiting for the ball to drop and its crippling to me, my kids, and my friends. Here's to a better summer as well.