Monday, May 4, 2015

Not the best day

Today wasn't an easy day. We have these days more often lately. It's hard for Mike and I to get out of bed each morning and leave Jude to go to work for the week. I don't mean to sound entitled but there should be something set in the universe that if your child is terminally ill then you become independently wealthy. Okay well how about just enough to pay the bills and eat? Then there are less stressors in your life.

Jude didn't look well again this morning when Mike and I left and we were both focused on his condition when we got to work. Mike ended up leaving work early but I was so busy I toughed the day out. I had a conversation via instant messenger with my cousin this morning and I believe if I share that with you then you can understand the summation of my feelings. 

Sarah: How are you? I had a break and wanted to check in
Me: Frustrated. How is it there? I picked up several things for Hanna I will drop off.
Sarah: Why frustrated?
Me: Hard to explain. Jude was so sick this weekend and I wasn't sure he was going to make it. Then he recovered but now he seems sick again. It's like I don't want him to pass but it's such a roller coaster. I love him dearly and I panic even thinking about losing him. I just wish there was a book that outlined what was going to happen and when. I am so spent.
Sarah: That's totally understandable. It sounds like it's really hard on you to watch and really hard on him. You want his suffering to be over but you don't want to lose him.


I wasn't going to share this video but THIS is what we see. This was our Friday night and this is SO hard.

Then he will recover and look as adorable as ever smiling beneath his oxygen mask. This kid can have minimal lung sounds and still smile. 

Then I saw this while I was scrolling through Facebook and I thought HOLY CRAP that's spot on today! It may be negative and over the top but it's fitting. 

So then I began to look for things that would put me in a better mood. This is about Jude not me and I am not going home to a fighting little boy in a pissy mood. Talk about not fair. 

Leibe makes me happy. Talk about unconditional love. Now if I could only train her to run to the store and fetch me a bottle of wine she would be perfect.  

Maui makes me happy which is where I took this awesome photo. I was proud of this shot. 

Emily's win makes me happy and that she will compete in November as Dallas teen! They told all the girls not to cry if you won due to pictures but she couldn't help herself. 

A healthy Jude. A healthy little Jude made me happy............

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