June 26, 2016. Strength

It's been an emotionally draining weekend.. Yesterday was a rough day for Cole. We're back on the high dosage of steroids, and they are certainly in full swing. He's on a higher dose than adults take which is crazy.. 😳 Today has been tough, but not as bad as yesterday.

He's been so frustrated and upset this weekend, and can't even control himself. He's in pain because he needs to poop and that along with some of the meds are causing stomach cramps. He got so hysterical yesterday morning that he couldn't even calm himself down. I left him alone and gave him some space to come back down. We keep hearing how rude we are to him and how we don't care, but it's the medicine talking and he's just so tired of everything and keeps saying it's not fair. We agree buddy, it's not fair. At all. Whoever is the one helping him or making him do things is who he gets frustrated with, so either way we all take our turn on the hot seat. Then he has moments where he wants us to comfort him and make him feel better so he wants us near. Again, the medicine is making him this way, but it doesn't make it easier to hear or bare.

All he's said all weekend is that he just wants the pain to go away..he just wants to poop so badly to make his tummy stop having pain.. And we still have the shoulder/side pain. He just just can't stop saying how bad it hurts.. Like a broken record he repeatedly says "it hurts so bad, I just want the pain to go away" It's painful for us when he looks us in the eye with such despair on his face saying these things. He would do anything to make it better..so would we baby, so would we.

Still so tough inside to see your child this way and know that you can't make it better. Personally, I find myself so exhausted every day, but yet feel like I didn't accomplish anything and am not productive. This is all just so emotionally draining that it's hard to find the energy in yourself to be productive in other ways. I want/need to clean the house, maybe work on some things for work to take my mind away for a while, exercise (I forgot what that even looks like), etc., but it's hard to motivate when all I want to do is "relax" because I have no energy. Nothing right now is really relaxing, but I keep telling myself to stay strong, it's not about me or any of us, it's about Cole. And he needs our strength to help him push through.

Tomorrow is our CT scan to see how things look. I'm a little nervous given the doctor's concern for it since he had the fevers, his inflammatory markers went back up, and his chest X-ray didn't look better. I'm scared the tumor has grown or spread, but am hopefully optimistic that it hasn't. I believe in my heart that the doctors and God will take care of him and things will be ok.

We need to pull our strength from within and continue fighting on this journey. We can be strong enough to handle anything. STRENGTH.

Isaiah 41:10 -- So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.