Speaking of this fake leg...I make it look easy. I know. I'm not boasting or bragging. I'm not "proud" of that - its just the reality of it. When I was facing becoming an amputee there were many things to consider. Basically, you can choose function or looks. I knew right away I was always choosing function because I don't much care about looks. So I worked very hard to become the highest functioning above knee amputee I could be. I do things like walk more than I should. Lift things I shouldn't. Climb things I shouldn't. Push mow the lawn. I say shouldn't not because someone said I can't (if you know me, that will make sense) I say shouldn't because every single thing I do comes at a price in regards to my leg. Every single day there is a physical currency for wearing my prosthetic and pushing my body physically as much as I do. And every single activity or event, I know I have to pay a price for participating in that event. So things like mowing the lawn in one day, indulging in all of my sister's wedding festivities, or climbing the Elba tower, I know I'm going to pay for those dearly. And I am willing to pay.
That being said, the smaller fees of daily life are usually not so much. But now that I do all of the tasks of two adults in the household, the smaller daily fees are collectively becoming much more expensive. I am now dealing with physical fatigue of my leg, skin break down, irritation, sores, and even open skin. Any amputee or medical persons know this is particularly risky for me because those things quickly lead to other issues. I tell you all of this NOT for your sympathy. I appreciate the sentiment but I can do nothing with that. I tell you simply as a frame of reference for an understanding. I would LOVE to be able to physically handle being an above knee amputee, the daily life chores, 4 kids AND my physically disabled husband. But alas, I can not. Not without ruining my own self. So when I say we have had to give up some of our family traditions, it's not because I was not willing to find a way to make it work. It's because I just can't.
A few years ago I would never have uttered the phrase "I can't." I hated it. I felt like a wimp. Like I was making excuses. Like I wasn't trying hard enough. Now, that I'm older and wiser, I see that admitting when I know I can't do something is actually a sign of strength. Saying no is not easy for me. I'm a people pleaser. And I enjoy giving everything of myself to benefit another. But the real strength is in knowing your limitations. In respecting your own self enough to know that you have to save something for you. That you can not empty your bucket into everyone else's because then you have no more to give.
I am not wonderful at navigating the new reality that we have been forced into. I don't know when to make what decisions regarding Jeremiah's health. I rely on the Lord to guide me and to speak to me in ways that He knows I will hear. And I freely admit that I am not deserving. That I do and say things that I know would make Grandma Taubel cringe (that's my measuring stick - would I want grandma to know that) but I am only human and I have officially transitioned to survival mode. Gone a little bit numb to the world in front of me so as to simply survive it.
I have not been posting here regularly because not admitting what was really going on in our life was a false sense of hope and comfort. But that too came at a price. And I have paid it. But I realize now that it is not benefitting anyone.
SO here is what is REALLY going on in our day today. If you have spent any time with Jeremiah you likely have thought he looks good and you aren't sure why I have said things I have in regards to him. I too make excuses when something seems wrong or off. Like "Everyone forgets people's names" or "Everyone struggles with ________ sometimes" and while that is true, not everyone struggles in the way that he does. The truth of our life is that things are progressing on the daily. That each day he and I both notice him slipping. Especially his mind.
He can no longer make decisions because as his Drs have explained, the part of his brain that uses rationale and decision making is gone. His impulses are or will soon be affected - we see this come out in mood swings. It has become very much a walking on eggshells life for me. I rarely relax or "let my guard down" because it's not if he snaps at someone today, it's when and how bad. AJ gets it the worst and I see their relationship breaking down. Jeremiah admits to me that his eyes are worse, despite him telling everyone they are getting better. His legs feel stronger (likely a false sense of reality thanks to the steroids) but that they do not "listen to what he wants". He now struggles with basic communication. Simple words escape him regularly. Yesterday he could not find the word "fabric" If he is speaking to someone, he will just grasp any random word to fill in where he can not remember, and that makes for a gibberish like sentence that I can not understand what he really meant.
He has become extremely socially awkward. Not being able to properly communiate is where our personal interactions begin. He no longer knows what is apporpriate and what is not. He has been diagnosed with Pseudo Bulbar Affect or PBA - you have seen the Danny Glover commercials for it. Only the commercial does not tell you that it can take on many faces and is not simply laughing at inappropriate times.
He has become extremely socially awkward. Not being able to properly communiate is where our personal interactions begin. He no longer knows what is apporpriate and what is not. He has been diagnosed with Pseudo Bulbar Affect or PBA - you have seen the Danny Glover commercials for it. Only the commercial does not tell you that it can take on many faces and is not simply laughing at inappropriate times.
He can no longer remember much beyond 12-hour stretches. So things that have happened this morning, he likely cannot recall at bedtime. He also tells me that sometimes the hustle and bustle of our busy family life is overwhelming for him and he can't handle it. And so the question I can not answer still hangs over both of us, now what?
He has completed this last round of steroids. We have been referred to the brain injury clinic due to the damage to his brain from the lesions. Based on what he reports to me I do not expect to see any improvement on the MRI at the end of the month. I simply hope for no significant deterioration. I worry that the medications we have pushed on him in the last 3 months have only masked the pain, but done nothing to correct the cause - but then again, that is the ugly of MS. I have no qualms about any of the staff we have worked with. I understand everything they are saying and the path we are on, even though we know Jeremiah can't. We have been working with a specialized social worker to help me navigate through the process of getting a PCA to come into the home. They are also forcing me to seek respite care for myself. I say force because you know I hate having to admit I need to do something selfishly for myself alone even though I know that it is crucial to the success of my children and family.
I want to say a special thank you to those of you who have sent cards. And Money. And gift cards. I HATE saying I need that help. But you have been God's answer to a prayer. The specific amount you have sent, or card you have sent, was exactly what I had prayed for a few days prior. We are not on food stamps or any of the like, and yes, I know that we need to be. But that darn pride keeps me from doing this I know I should. Anyway, thank you for being God's answer to my prayers. I plan to hand write thank you's to all of you. But I guess I'll have to do that in my spare time. ha!! Thank you for being our friends. Knowing that we are surrounded by a community of love and support brings more comfort to us than you could know.
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