It is one of those days.  One of those days that I just can’t do it. CAN NOT DO IT.

Started off in Grand Island to pick up new orthotics for the boys. Let me back up. Last night at play practice Rowen came up to me limping and told me that his leg hurt so bad that he couldn’t walk.  I try not to get too alarmed because often times, when Rowen is extremely fatigued, he will say he is hurt versus having to admit he is tired.  He sat with me for a few minutes and then said he was going to find his friends.  I thought I was right.

This morning he got on my lap and said it still hurt.  I asked him again to tell me what happened.  He had been playing “Duck, Duck, Goose” and when he stood up to run, he heard a ‘pop.’  I checked him over, no swelling, no bruising, nothing, just slight tenderness.  We went about our morning.  At home the boys do not have to walk far or fast and I noticed only that Rowen was a bit slow.  We drove to Grand Island and at the orthotics office I noticed he was really limping.  My alarms started to go off.

My mind was racing.  If it’s broke it’s bad.  He might not walk again.  He has gotten so heavy, we are not prepared for him to go off his feet.  We have nothing to help us lift him.  Is the battery to his power assist wheelchair even charged?  Will he need surgery?  We will want surgery to help keep him walking.  We will have to go to Omaha.  Anesthesia can’t handle him here.  We have no groceries.  We have to get groceries so that the kids that stay home have food.  Text Jason.  What doctor do we want to see.  Those doctors can’t see him.  Do we go to same office?  ER? Urgent care?  Wait and see?

We left the orthotics office.  We went to Hy-Vee.  This was not a planned stop so I had no scooters for the boys.  We were not getting too much so I thought Rowen and Mary could ride in the cart and the other 2 boys could walk.  I had to lift Rowen (90 lbs) over the cart to get him in the cart.  Mary sat next to him.  I was pushing over 110 lbs of child.  And the cart sucked.  I was pushing and working so hard.  I was sweating and breathing heavy.  Also, I continued to add weight each time I put an item in the cart. Then, Hy-Vee is apparently re-stocking or organizing their shelves.  Every isle was full of carts and employees filling those carts with merchandise and other employees restocking shelves.  I was to the brink of tears several times, especially when I could not find the isle with the crystal light.

We made it out of that grocery hell.  We loaded the van.  Only, the car next to us parked too close and I could not support Rowen as much as I usually do.  He put a lot of weight on his leg and it ‘popped.’ I heard it this time. We met Jason at home who agreed we needed to have him seen.  We had an appointment at 4:10 but that was hours away and my mind was too far ahead of me to wait until 4:10.  Jason drove back out to work to get a few things he could work on from home and I texted babysitters until someone agreed to come over right away.

Jason came home and we went to the ER.  As we were entering the ER Rowen stopped and pretty fearfully admitted he had never been to the ER and did not want to go in.  I stopped and hugged him and promised that Mom and Dad would be with him every minute.  Brink of tears again as I realized that today the great big giant disease had over shadowed the little boy living with it.  Of course he was scared.  And it hadn’t crossed my mind until he said so.

We sat in the waiting room for nearly 2 hours.  They could not see us and Rowen was starting to get overwhelmed and exhausted.

We left and drove to an urgent care.  We had called ahead and they had no wait.  They saw us pretty quickly.  He had an X-ray and it came back with no breaks.  They thought maybe a strained muscle.  We were told to ice it and not to let him do anything that hurts.  I don’t feel completely confident; but only time will tell.  I hope they are right.

It is hard to see providers that are not familiar with our boys, our family, or Duchenne.  The little nurse or tech or whoever she was that was taking his vitals, asked us if he gets enough exercise?  I’m looking at him and what daily steroids for 5 years has done to my precious boy; but her obvious lack of knowledge about his disease saw a chubby little boy.  I wanted to flip her off and said so after she left the room…Rowen giggled profusely at my confession! Don’t worry, Jason was much more gracious and answered her question politely, “it is limited.”

I’m to the brink of tears again sharing this with you.  It is one of those days that I’m telling you that I can’t do this job.  It is so hard; so much harder than I ever imagined parenting to be.  It is one of those days that I’m telling HIM that my beautiful boys deserve someone so much better than me.

The saving graces though are an orthotics guy that told us he is coming to the boys’ play.  Two babysitters both willing to come over with no warning to help us. A husband that took an afternoon off to help me with the scooter and Rowen who was non-weight bearing for most of the day.  A daughter that came straight home from work and stayed with her siblings so the sitter could leave. On one of those days when I feel so inadequate, I am thankful for the many others around me willing to pick up the slack when I just can’t keep it all together.

People always tell me how strong I am.  I wanted to let you know I’m not all that strong.  I am so weakly human.  I doubt, I question, I tantrum!

I just love my kids and will do everything in my power for them. And pray a whole heck of a lot for God’s help with that power thing because without him, everyday would be one of those days.