Archive for February, 2014
You might not want to read this post if you are looking for a pie-in-the-sky ending! lol. Seriously, I’m starting to feel like I have leprosy or the plague or something. Today has been one of those kinds of days. There’s a joke in our family (that will remain in our family) about these kinds of days. It’s been this way for years but when I have these kinds of days somebody is really usually pregnant. It’s happened too many times so be watching these posts in about two to three weeks for an announcement about who fessed up to being prego!
I always get up at 5 to check on Chris, change him and get a bolus in early. That way I don’t have to worry so much about reaching his calorie count as I’m a good 300 or so ahead. By 6 most mornings I am tutoring English to my Chinese students via Skype. Depending on the day this occurs from 5:30 to 9. Some days that’s solid but some days it’s just 2 or 3 students during that time frame. Today I had 2 students scheduled; one from 6-7 and another from 7-8. That worked out great for today since the mostly new aid (who hasn’t been here since Thursday, February 6) was coming at 8 o’clock. Somehow I had this way beyond reality dream that I’d get my first outside run in this year — well….
My students didn’t show on Skype and the aide didn’t come or call either. I called the wound care clinic at 9 to get an appointment on any day but Friday – with any doctor but the one we used before – but the only spot they had for new cases is Friday with the same doctor. So I’m already tensed up and praying Chris’ thumb heals up before Friday so I can cancel the appointment. (But miracles seem to be running pretty short around here.)
Then I can’t get my assigned group members to email me back on our project that is due now just one week from tomorrow. And this is all before noon! Chris has a rough day. He ate good at breakfast but had difficulty at lunch. I gave him a breakfast shake that used real milk for a change and I think that he is really having difficulty with milk products. So I have to regroup there again!
My whole afternoon is pretty much arranged around my math student who comes at 4:30 for tutoring. I either have to get Chris in bed early enough to get him back up before 4:30 – or keep him up late enough to get him up after tutoring. I opted for the middle of the road approach for today. But I also have to consider that on Monday’s I have a Brazilian student via Skype at 7. Chris’ feeding has to fit just perfectly between the two. Anyway – the 4:30 didn’t show up either!! I’m like — are you kidding me? Not only is all this a major inconvenience, I’m losing money!
In between all this there was a huge matter I was having to chase down that I wasn’t supposed to even be worried with at all. But now I’m chasing paperwork and mechanics and how to pay for stuff that I thought had been paid for already. There were several things I had been led to believe were already taken care of and today I found out none of it had been done. That’s right- none of it. Now I have to inconvenience another whole set of people to do things that were supposed to already be done! I’m like Jeez…. Let’s just say I’m frustrated!
Here is the part you really might want to skip. As usual I am just laying it all out there. (Hey this blog is cheaper than therapy! – maybe I should have titled it that! lol) So this morning on Facebook a few of my friends were posting that loved ones or family members had wrecks on the ice. I always pray for the person in the wreck and the families involved because I know how devastating those tragedies can be. I pray in sincerity and in hope that God does see fit to keep loved ones safe. But the other part of me gets sort of upset when He does it. Then I get mad at myself for being that way. A friend posted this (and they were totally right ) “Here’s a picture from so-and-so’s wreck this morning. God was really with him!” And He was… and I am very happy that they are safe. But my thought when I see statements like that is always something like “but He wasn’t with my son…..” (…and now the church police are going to arrest me! lol)
I know God protects and we should be so very thankful — but how do we remain thankful when He doesn’t protect? I mean what am I supposed to do with that? I am very happy they are okay – don’t take me wrong – but I wanted my son to be okay too. And he’s not. He’s here. But he’s not. I remember waking up in the SICU waiting room wishing I was awakening from a bad dream that was all too real. But it was real. For a short while I kept thinking maybe God was going to come riding in on a white horse and make everything better – and raise my son up so we could praise Him for the great miracle…but He did not.
I refuse to lose heart now. I’ve seen Chris come from mostly unconscious to being vocal and arguing with me with his eyes. He looks me in the eyes and I see him still in there…somewhere. I will not stop fighting – pushing, and moving forward. But there are these kinds of days that really make me wonder why we are even still on this earth…you know? What’s the whole point? And specifically, why am I still here? And why does no one want to come near me! lol — am I contagious or something? I really think I’m okay and all of these crazy emotions might be settled down by tomorrow….but if not – we’ll give it all another shot then. It’s like living life on hold. Whether I walk alone or with a huge crowd – I intend on fulfilling what He has put in my heart to do. Now as soon as I get my faced washed and get myself gathered back up (and find out who is pregnant) I will be right back on task starting all over tomorrow. Why?
Remember my affliction and my bitterness, the wormwood
Surely my soul remembers and is bowed down within me.
This I recall to mind, therefore I have hope.
The Lord’s lovingkindness indeed will never cease,
For His compassions never fail.
They are new every morning;
Great is Your faithfulness.
“The Lord is my portion,” says my soul,
Therefore I have hope in Him.
The Lord is good to those who wait for Him
to the person who seeks Him
It is good that he waits silently for the salvation of the Lord.
What do you think? In years gone by we were taught even by prominent leaders in the church that it was sin to be depressed and that it displayed a great lack of faith. I do not agree. Depression is a very difficult thing to work through and it is very common among caregivers, especially those who are “on the job” 24/7 with very little or no breaks. I have to admit my own struggle with this debilitating emotional stress. There are days when I am fine. I might go for a long time doing very well and able to keep my chin up in the midst of adversity. One example of how I “crash” is I might catch a glimpse of some older pictures of Chris, or I see one of his friend’s statuses on Facebook. I wonder what Chris would have been doing right now if the wreck had not occurred. This can send me on a downward spiral that is difficult to overcome.
I think the hyper-faith movement almost stripped us of natural emotions and feelings. We were basically taught to ignore how we felt and our emotions. This could be very dangerous since when we ignore emotions rather than deal with them in a healthy manner, we can end up damaging ourselves, in some cases irreparably. I am thinking that the solution is to hit them head on. There’s no way to act like Chris’ wreck did not occur and behave as though nothing happened at all. Caregivers many times in these situations deal with a living grief since the loved one we knew no longer exists, but they are still living. That cannot be ignored; but it can’t be dealt with one time and then move on either since it is so in your face on a daily basis.
Looking through scriptures I did not find one time when emotions were condemned. Jesus never told anyone “you shouldn’t feel that way.” This takes my thoughts to the beatitudes. Jesus said that those who are poor, hungry, persecuted, and mourn are blessed; but He said, “woe” to those who are rich, well-fed, and well spoken of. That seems sort of backwards to the way early faith-ers taught it. He did not condemn those who mourned but offered promises instead. Somehow I find that comforting. The Jesus I know does not kick people when they are down! And that is exactly what happens when the hyper-faith-ers tell those who are in mourning that it is a sin.
David had his bouts with discouragement and perhaps even depression; and he had every right to. I always think about the story where he was in Ziklag and everything went wrong. He returned from battle to find his wives and children missing, the city was burned to the ground and then everyone turned against him and blamed him for the catastrophe. In 1 Samuel 30:6, David was greatly distressed, especially when he found out everyone wanted to stone him for it! But he strengthened and encouraged himself in the Lord. In no way does this story condemn his distraught feelings. The feelings were real and they were strong. He – like we do – turned to the Lord for strength and encouragement since there was no one there to help him out with that.
As a caregiver I spend hour after hour alone. Sometimes I get to speak on the phone or via Skype to other people; but many times there is not normal conversations day after day. Even when there is, in between there can be many lonely hours. It takes great effort to encourage ones self in the Lord. For me, when I have days that depression tries to set in I’ve found if I change up what I am doing it can help me shift my focus. Sometimes it is as simple as picking up my Bible and finding comfort in scriptures. But to be totally honest – it doesn’t always work that way. There are times I find the scriptures frustrating – yes, I really said that. I see where Jesus healed some – but not all. I see where some prayers were answered – but not all. That can be very confusing especially on a difficult day. It can signal a barrage of questions through my mind – why not my son? why not my prayers? And honestly I find myself more frustrated and depressed than before. Why is that?
Perhaps it is because I was taught this hyper – avoidance of reality “faith” where what you see isn’t real. Well is sure feels real. It can be difficult to shift the thinking to eternity’s bliss when the pain of today is staring you down face to face. So I have learned to deal with these emotions rather than dwell on them or let them take me under. I say that easily – but in actuality it is very difficult. I have to talk myself through the day when it’s like that. Here are some things that I tell myself to help me get through today whole body, soul and spirit:
- Today is not the end of the story
- For today I have everything I need (sometimes for this moment only – I have all I need)
- My soul (and the soul of the loved one I care for) are secure – they have not been damaged or doomed by life’s battles
- God promised to keep my soul safe – not my body – and He has at least kept that promise
- I can create my own world here in my cave – what do I want to keep and what do I want to discard?
- Other people are just not going to “get it” so don’t try to explain – it’s exasperating!
- Take care of your body – sometimes it’s all you feel you have left – and it’s something I can control
Basically, I find some positives to dwell on. I think about the progress my son has made rather than how far he has left to go. Sometimes I can encourage myself by thinking about how God has provided for the journey. Work can be a double-edged sword – I either have too much to keep up with or not enough which can cause worry! I try to find the positives. If I am looking at pictures or Facebook and it’s causing me negative emotions – I change my environment. I might go study, read a book, watch a movie, clean up an area of my house, make soap or take a nap. But changing the moment helps me change my focus. I’m sorry that I cannot find some super deep spiritual panacea that makes the depression go away…I really would like that.
I like Psalm 42 – it’s written by the Sons of Korah who also had reason to be distraught. They witnessed the earth opening up and swallowing all their relatives! Two times in Psalm 42 they remind themselves that their hope is in God. This reassurance follows immediately behind the question, “Why are you in despair my soul?” Verse 9 says I will say to the Lord my rock, ‘why have you forgotten me? Why do I go mourning because of the oppression of the enemy?’ Is it okay for that brutal honesty to be in the Bible? I guess so – it’s still there!
One thing to remember is that we are not alone in our depression even though it’s not a shared moment. No one may ever know — and that’s okay. We are still not alone. It is not unusual and we are not scarred for life because of the battle we face. Dennis Jernigan has a song that has a line which says something about the battle does not define who I am. I’m not identified by the struggles I face – my identity is still in Christ and depression is not the unpardonable sin! It’s just one more thing that we must navigate through in a healthy manner to make it safely through the day.
By changing my focus or actions I can help give myself the tools to dig out of depression before it buries me. Even though there is a struggle I will always run back to Him. Perhaps that parallels the Sons of Korah’s actions as recorded in Psalm 42 – even though they honestly expressed their distress and feelings they returned to say Hope in God. In the mourning, anguish, feelings and depression we can always return to Hope in God, for He is our rock. Faith is not avoiding the conflict – or ignoring the present – it’s returning to Him for help.
My chamomile tea has become a nightly ritual. Just before bedtime I bolus Chris, change him and make sure he is comfortable. Then I load the dishwasher, switch the laundry around and head to bed with my cup of perfectly blended chamomile and mint tea. I like this arrangement. And since I found loose leaf dried chamomile and mint I mix it together and it makes the perfect bedtime drink. Just a side note though, don’t put too many of those cute little chamomile flowers in it – or you will be up through the night since it has a diuretic effect as well as a calming one. lol
I usually bring my tea and my kindle to bed with me and I will read or play a game or two and try to unwind. But today is a very reflective day for me. My former mother-in-law passed away last night.Death has a strange way of stopping our typical day and making us think a little more. One note is that I am sure she only left time to be born into eternity. And as I told my daughter last night – Jesus is holding her real close because He’s been waiting for her for a long time!
Still it makes you think about your life. Or at least it has me. I wonder what others will remember about me when I’m gone – or if they will remember me at all. And I’ve been thinking about my life in general. I think of the song, “It is Well with my Soul.” Even in this furnace life has me in – I know it is well with my soul. And even more comforting is that I know it is well with my kids’ souls too – including Chris. Even though his body and brain are broken or not working right – his soul is just fine.
Even though I see my daughter grieving her grandmother’s passing I know there is comfort there for her as she knows all is well with her grandma as well. It really helps to know that your loved ones are believers.
So all this is running through my head along with just the normal day’s stuff. Boy, it’s a busy place up there! I think about what I got done today and not what I left undone and waiting until tomorrow. And I am also very thankful that the doctor actually called in an antibiotic for my son. That’s a rare thing around here. But the site around his tube is infected again. It is kept clean and so I have no idea why it keeps getting infected. It is certainly frustrating and I feel like a huge failure each time something like this goes wrong. I don’t know what I think I could do any different, but it is frustrating nonetheless.
Isn’t that just part of being a caregiver? We get stuck in these vicious cycles and get trapped. There will always be something. Trust me – always. I know it is not good to deal with superlatives, but there are sometimes when they work properly and now is one of them. It seems like I just can’t catch a break. And really, this is one reason I chose to write here tonight. I have to break the cycle.
I can get depressed very easily (also a very common caregiver problem). And doing something different is one of my strategies. The trouble is that I have to catch it early on or I get sucked into this inescapable vortex. It’s really complicated and there are so many factors. Running is one way I stay sane – but if I don’t stop the oppression or depression early on it can even take away that desire. Of course that is complicated too – I was so looking forward to getting outside to run at least one day this week. But the new aide got ill and won’t be back until next week. I haven’t run outside since December 18. I’ve actually only been out to the store for groceries and necessities about 3 times since then.It gets crazy!
So I sit here sipping my chamomile tea and waiting for sleep to come. And I think. God is not one to “repent” of the things He’s said. He does not “revoke” gifts or callings according to Romans. So there must be some way that He intends to get glory out of this present situation. While it is certain that being a caregiver is not a glorious position and no one is likely to tell you “thank you,” He has to be serious about getting glory. I guess I got to this point from the scripture where the disciples asked Jesus in John 9 why the man was blind; and whose sin caused it. Jesus said that no one sinned to cause it but that it would manifest the glory or works of God.
With that in mind, I have to think that somehow – somewhere at some time – God will get glory from Chris’ story. It certainly doesn’t look like it from here and it really doesn’t look like I thought it would – but He can get us to that place. He will get glory somehow. Hopefully, He will allow my voice to be used to sing His praise when it’s all said and done.