Who Said It Was Going To Be Easy?

Linden became very sick a couple days after I returned home.  She was coughing constantly and wheezing when she breathed.  She literally sounded like the little kid on the whooping cough commercials.  Patrick took her to the doctor and they diagnosed it as viral.  Hearing "viral" is the worst thing parents want to hear when their child is sick with a severe cold.  So, we waited it out when they assured us it would get better.  It didn't.  It got much worse.  We almost took her to the emergency room.  She couldn't sleep or stop coughing.  Her breathing was labored and I was getting scared.  We took her back to the doctor two days later and Patrick demanded medication.  Once she got it, she improved very quickly.

Those couple of days were excruciating for me.  She was so sick and she would hold out her arms for me to pick her up, but I couldn't.  My heart literally broke.  I tear up now just writing it because I can still feel how I felt during those moments even now.  Patrick had to help her during the night because my left hand was still pretty useless and he was getting no sleep.  Of course, he still needed to go to work the next day.  I couldn't drive so I couldn't take her to the doctor.  He had to miss more work for that. I was home and I was useless.  I couldn't do anything to help my own daughter.  I was useless.  Wow, was that a hard pill to swallow!  Welcome to the second time I hated my stroke.  I would lay in bed and listen to her struggle and Patrick try to soothe her and just curse God.  I was so mad at Him.  Why was He doing this to me?  To Patrick?  To our girls?  Why?  What did I do to deserve it?   

Facebook post from December 1, 2013

Many people have told me that God only gives us as much as we can handle. I am not sure if I believe that. But, if it is true than I want God to know that I am pretty close to my limit. I kindly ask Him to give me Sunday off. I just need a day to get my feet back underneath me and make this a fair fight again.

I started out patient therapy shortly after she got better.  I went for 30 minutes of PT and 30 minutes of OT three times a week.  PT went very well that morning but OT was the normal thorn in my side.  We started the session by assessing my eye movement by tracking a pen  My in-patient OT had told me that the out-patient OT was the eye specialist.  When we finished I asked her if she thought my eye would ever return to normal.  As with any brain trauma, it is impossible to know what is permanent or temporary.  She expressed that same sentiment.  But she also added that my deficit was significant.  She said it nicely and professionally but I have learned to read between the lines and read body language through all my doctors visits.  I heard and saw, "No.  It probably will never be normal." She was a "specialist" of sorts and she didn't think it would get better.  I was instantly domed.  I was done.  I turned off completely.

But, we were only 10 minutes in to the session.  I still had to retest all of my strength and movement exercises.  All of my grip strength scores had barely improved in two weeks so the results just added to my pity party.  And the 9-hole peg test, forget it.  She let me try for two minutes before she saw that I was immensely frustrated and told me to quit.  I just wanted to go home and sulk.  I am sure I gave her a terrible first impression. 

After my session I called Patrick and gave him my therapy report.  I didn't give him the whole story but told him that "she didn't know" about my eyes.  I tried not to reveal how upset I was in my voice, but I know he knew.

I went home and wrote as I always do when I am overwhelmed.

Facebook post from December 4. 2013

I firmly believe that you choose to be positive and choose how you react to every situation. I also think that being strong or weak or choosing to keep going or give up is a mental decision, not a physical one.

On my strong days I am positive, motivated, patient, and optimistic. On these days I am persistent with using my left hand for tasks, believe fully that everything I am struggling with will improve completely, focus on my improvements only, and have faith that God will take care of me.

On my weak days I am scared, frustrated, impatient, and emotional. I give up on my left hand, focus on everything that is still broke, and consume myself with the what it's.

99% of my days I am really strong. But that 1% when I am weak completely dominates me. Then, of course I get mad at myself for not being able to mentally "turn it off".

Expressing my thoughts on Facebook has been very helpful. However, you all now know pretty much everything I think and feel. So, I can't just flash a big smile and hide behind it. The truth is that I am embarrassed of my crazy eyes, my robot hand, and my bozo walk. I envy all of you for being able to do the simplest tasks without a second thought and dream about being able to do the same again. It also destroys me to know that I am causing others pain and anguish--to have a front row seat to watch people close to you struggle is unbearable. And to be honest, I am a bit angry at God.

If you haven't already realized this, I am in a weak moment. I was extremely disappointed with my performance in therapy this morning and that has allowed my fears to creep on in. I contemplated whether to post this or not, but ultimately decided to pull the "I had a brain bleed" card and decided I just didn't care whether it was appropriate or too personal. I am hoping that writing will help.

In an hour I will get out my OT and PT practice and redeem myself from this morning and this moment will just be another bump in the road. I will realize that I am okay and everything is going to be okay. But, in the moment when you are driving over that bump it sure does feel like your wheels are falling off.