All I can do is hope some of these weird changes in Chris are indeed improvements! He is awake at odd hours; 11 at night, 2 AM and so forth. Then when it’s time for me to get up around 6 he crashes and I hate to disturb him at all! One good thing – he’s awake! He slept for so long and now to have the “problem” of him being awake at night is a wonderful “problem” to have!
But yesterday he was in pain. At least that’s my guess as he was sweating like crazy. That’s how a brain injury communicates that there is the presence of pain. But we got lost in the shuffle once again and still no prescription for his pain meds. (It’s only been a 3 week wait!) And that’s where my frustration set in this morning around 5. Chris was obviously uncomfortable and I couldn’t help him.
It seems like all along this journey Chris is the one who has fallen through the cracks. Way back during the elongated hospital stay physical therapy didn’t work with him to prevent contractures. We were lucky to see them once or twice a week. He just wasn’t a priority; too many patients not enough staff! Plus he didn’t have any real insurance.
The nursing homes were great – they just didn’t know what to do with a brain injury. Workers preferred to just let him sit in bed because that was easier. He didn’t qualify for physical therapy there for a long time. Then when I requested it because of changes they didn’t come until Valir requested it so he could go to rehab. I won’t ever forget the day the team finally came to evaluate him. They were amazed at all he’d started doing. One even said, “I’ll recertify him now based on what I just saw.” And i was like he’s even having a bad day! I looked at them and said, “I asked for a re-eval three months ago and you just didn’t have time.” They looked away and remained silent.
It seems all along the way we have had to fight for the things that he is supposed to be getting to start with. Even now home physical therapy is provided for but the company is basically too lazy to mess with the paper work. And so once again he falls through the cracks.
Then he finally goes to rehab – very good thing! The doctor that was seeing him (more acquainted with brain injury) quit. She shut down her private practice to work in the hospitals. (can’t blame her for that at all!) Their office referred Chris to OU med’s neurological unit for his care. I’m thinking it’s a good thing. But there is no primary care physician who can make the referral now…once again he is lost in the shuffle.
So how do I work through all this frustration? I keep thinking of the scripture in Psalm 27:10 that says even though my father and mother forsake me the Lord will take me up. Now Chris’ father and mother haven’t forsaken him but those who are in charge of his medical care seem to have done just that! I have to trust that the Lord will take him up! Isaiah 49:14-16 helps too But Zion said, “the Lord has forsaken me, and the Lord has forgotten me.” Can a woman forget her nursing child and have no campassion on the son of her womb? Even these may forget but I will not forget you. Behold I have inscribed you (Chris) on the palms of My hands your (Chris’)walls are continually before Me.
I must trust that the Lord will take up his cause, He will carry Chris. The words Paul shared in 2 Corinthians 4:7-10 ring so true for me this morning after a long night! He said that we have all the treasure of Chris within us – but it is in earthen vessels. We are afflicted… that’s Paul talking here – do you think he lacked any faith when he said that? I think not – he was dealing with present trouble. Affliction and trouble are not the sign of the lack of faith!
We are afflicted… but not crushed!
We are perplexed…but not in despair!
We are persecuted…but not forsaken!
We are struck down…but not destroyed!
Thank God for the “but nots” today! Yeah, there’s a lot going on. There is indeed a struggle…but there is not defeat! No matter what we are going through it is not the end of the story. I will hold on to the but nots today! He is faithful and He has not abandoned us! He will hear our cry from heaven and He will answer!