Ever hear the phrase "on the outside looking in"? It is meant to convey a sense of longing for something that you don't have. It is also used visually in movies, paintings, songs. Usually some poor waif is looking longingly at a holiday meal with a family gathered around a table. You are meant to feel pity and compassion for the individual. In the movies, that scene usually comes full circle when that waif is brought to the "inside". It is a "happy ending".
In my head, there is a window and I am on the outside. It used to be much bigger but I am slowly bricking it over. Right now, there are curtains over it. But sometimes, a wind will blow the curtain aside and I look. I look into what life "should be".
In it, Jarrad and I walk Emma into her first day of kindergarten. Sam throws a fit and Jarrad carries him out. I kiss Jarrad good bye as he gets into his car and drives to work. And I don't worry about his job. Or money. We just had a trip - he and I - to Boston. He went to a conference and I stayed in the hotel by the pool and read till he came back. We walked all over Boston. My history man told me all sorts of tidbits and we talked about how we are going to torture our children by making them come here. This weekend, we would do house things; maybe go to the Farmer's Market and get apples so I could make apple sauce next week. No, wait, we would go to a birthday party of one of Emma's friends and Jarrad would play laser tag like one of the kids. Church and on Monday, we would cook out.
I fell asleep trying so hard not to look out the window in my head at what life "should be". And when I woke up, I had forgotten what life is. I heard his voice and was relaxed and then I remembered and was not.
I sit here, with tears streaming down my face. I am so tired of crying. I am so tired of seeing him struggle. Now, his one knee is funky. He was getting dressed and bent his knee and it sounded like someone snapping a finger. Now, it is just weird. It has a whole lot of range of motion; more so than the other leg. We are both scared. We told the nurse and PT but they didn't seem to be too concerned.
I know that being a Christian is no guarantee of an easy life but I am really struggling here. I know that God's ways aren't ours. I know that His plan is perfect. Maybe one of my children or grandchildren will find a cure for SCI. But that is little comfort in the here in now. What I really want is for someone to come outside and bring me and my whole family in from the cold.
I am not sure how much more I can take.
Thursday, August 30, 2012
Friday, August 24, 2012
early in the morning
When you first wake in the morning, there is a short window of time when everything is right with the world. It is a magical time. You are content for a few moments before you remember and then the world has been turned upside down and the nausea starts. I have found that as time goes by, the nausea doesn't last as long. That is something at least.
Just when I think that I am getting things squared away in my head; just when I adjust my dreams that I thought had died, just when I stop focusing on what we can't do and what we can, we get hit again.
Heterotopic ossification - excess bone growth on the joints which can hinder movements of the joints and make mobility (read - independence) more difficult. Guess who has it? Yep, my wonderful, strong husband. Only about 20% get it. Yeah.
Oh, AND 49% get carpal tunnel syndrome - guess who has that too? Yep.
Really? REALLY? God, I have not cursed you. I have chosen to see your blessings in this. It has not been easy. I have had to force myself sometimes. I have focused on what I know and not what I feel. My heart cries out WHY? Why are you doing this? What lesson do you want me to learn? Why are you allowing this to happen? Is it not enough that he is paralyzed and will suffer chronic pain as a result but now, now, he has these additinal things to happen that will cause more pain and difficulty.
I want to say that it is well with my soul. I really do. Please God.
Just when I think that I am getting things squared away in my head; just when I adjust my dreams that I thought had died, just when I stop focusing on what we can't do and what we can, we get hit again.
Heterotopic ossification - excess bone growth on the joints which can hinder movements of the joints and make mobility (read - independence) more difficult. Guess who has it? Yep, my wonderful, strong husband. Only about 20% get it. Yeah.
Oh, AND 49% get carpal tunnel syndrome - guess who has that too? Yep.
Really? REALLY? God, I have not cursed you. I have chosen to see your blessings in this. It has not been easy. I have had to force myself sometimes. I have focused on what I know and not what I feel. My heart cries out WHY? Why are you doing this? What lesson do you want me to learn? Why are you allowing this to happen? Is it not enough that he is paralyzed and will suffer chronic pain as a result but now, now, he has these additinal things to happen that will cause more pain and difficulty.
I want to say that it is well with my soul. I really do. Please God.
Tuesday, August 21, 2012
have no choice
We are going home. It is not going to be normal or perfect. We are going to have more things to get used to and we need to relearn how to do stuff but it is HOME. I am not sure how it will work and am very scared to go but I want to be at my house with my routine - whatever that is.
I have to keep pushing at the part of me that thinks everything will be normal. I have to remind myself that I need to get 3 people up and ready in the morning in addition to myself. I may not get a chance to shower so be kind if I start to stink! Jarrad is worried that it will be too much but that is the way life is right now. I don't have a choice.
When I was at rehab a few weeks ago, one of the CNA's said to me that I was amazing. "Too many times, we have patients coming in the front door and wives or girlfriends going out the back." I don't have a choice because I made a promise - for better or worse. That is a promise I made because I love Jarrad and what is my love worth if I bail at the "worse" part. What does it say about our society when we are in awe of someone who DOES NOT "head out the back" at the first sign of difficulty? Of what value are our promises? No wonder we have so many lawyers and contracts and prenups.
I have no choice because I couldn't live with myself if I left Jarrad - not because I can't live with this disability but because I can't live WITHOUT him. Life would be worse off if he weren't in my life.
I used to get so irritated when I was single because it seemed like everyone was pushing marriage. Like I couldn't live a full and fulfilling life without a man in it. And then I moved south and met a southern gentleman. When we were married, I got it. What no one said to me. What they should have said to me (I am a romantic, after all). When you meet your soul mate, it is a gift. There is really nothing that can describe it. Well, actually there is but it is all cliche'. A soul mate makes you a better person. A soul mate knows you better than you know yourself. He is your best friend. You love them more than yourself but the line is blurred because he is a part of your self.
So, this stage will be tough. But I know my husband. He is determined and strong and stubborn and funny and so very, very impressive.
I have to keep pushing at the part of me that thinks everything will be normal. I have to remind myself that I need to get 3 people up and ready in the morning in addition to myself. I may not get a chance to shower so be kind if I start to stink! Jarrad is worried that it will be too much but that is the way life is right now. I don't have a choice.
When I was at rehab a few weeks ago, one of the CNA's said to me that I was amazing. "Too many times, we have patients coming in the front door and wives or girlfriends going out the back." I don't have a choice because I made a promise - for better or worse. That is a promise I made because I love Jarrad and what is my love worth if I bail at the "worse" part. What does it say about our society when we are in awe of someone who DOES NOT "head out the back" at the first sign of difficulty? Of what value are our promises? No wonder we have so many lawyers and contracts and prenups.
I have no choice because I couldn't live with myself if I left Jarrad - not because I can't live with this disability but because I can't live WITHOUT him. Life would be worse off if he weren't in my life.
I used to get so irritated when I was single because it seemed like everyone was pushing marriage. Like I couldn't live a full and fulfilling life without a man in it. And then I moved south and met a southern gentleman. When we were married, I got it. What no one said to me. What they should have said to me (I am a romantic, after all). When you meet your soul mate, it is a gift. There is really nothing that can describe it. Well, actually there is but it is all cliche'. A soul mate makes you a better person. A soul mate knows you better than you know yourself. He is your best friend. You love them more than yourself but the line is blurred because he is a part of your self.
So, this stage will be tough. But I know my husband. He is determined and strong and stubborn and funny and so very, very impressive.
Love is patient, love is kind. It does not envy, it does not boast,
it is not proud. 5 It does not dishonor others, it is not self-seeking,
it is not easily angered, it keeps no record of wrongs. 6 Love does
not delight in evil but rejoices with the truth. 7 It always protects,
always trusts, always hopes, always perseveres.
- 1 Corinthians 13:4-7
it is not proud. 5 It does not dishonor others, it is not self-seeking,
it is not easily angered, it keeps no record of wrongs. 6 Love does
not delight in evil but rejoices with the truth. 7 It always protects,
always trusts, always hopes, always perseveres.
- 1 Corinthians 13:4-7
Tuesday, August 14, 2012
are getting ready
I was going to write a blog entry but now I forget what I was going to write about. My mom has yelled at me for going too slow as I drive. She says I am just like my dad - that when we are thinking, we tend to not pay attention when we drive. At least I was driving slowly.
My head is full of all this "stuff" and I forget it. I feel like I stutter my thoughts into conversations.
Jarrad's discharge date is August 29th. Emma starts kindergarten on the 29th. Social Security denied us so I sent in an appeal but got called today to say that his medical disability has yet to be determined. Jarrad has carpel tunnel in his hands. Is it temporary or something more serious? Will the ramp be done? Will the bathroom be done in time? Or a part of it? Can he get into the van? Will we get the stuff we need for home in time? How are we getting a chair and all the other stuff home? How is this going to work? What is the drive going to be like?
I need to be at rehab for my training but no one is giving me an amount or a time - just "whenever you can". That is NOT an answer. We are going to spend the night together in the ADL suite. I am not sure what the acronym is for but it is like a little apartment to see how we handle it. I refered to our situation as that of parents. Hello - this is our new baby, Paraplegia. I feel like we are always running out to the doctor or nurses with every minor thing. I think that both of us are feeling this nonpressure pressure. We have no idea what life is going to be like. I can't help but think that Jarrad and I are going to be all right but everyone keeps saying how brave we are or that we are amazing- I know it is weird but it makes me think that they all know something that we don't. I feel stupid. It is hard to think that we are going to be alright when I feel like people know so much more about this situation. Do they know something I don't?
Even this blog seems to be stuttering. There is no eloquence to it.
My head is full of all this "stuff" and I forget it. I feel like I stutter my thoughts into conversations.
Jarrad's discharge date is August 29th. Emma starts kindergarten on the 29th. Social Security denied us so I sent in an appeal but got called today to say that his medical disability has yet to be determined. Jarrad has carpel tunnel in his hands. Is it temporary or something more serious? Will the ramp be done? Will the bathroom be done in time? Or a part of it? Can he get into the van? Will we get the stuff we need for home in time? How are we getting a chair and all the other stuff home? How is this going to work? What is the drive going to be like?
I need to be at rehab for my training but no one is giving me an amount or a time - just "whenever you can". That is NOT an answer. We are going to spend the night together in the ADL suite. I am not sure what the acronym is for but it is like a little apartment to see how we handle it. I refered to our situation as that of parents. Hello - this is our new baby, Paraplegia. I feel like we are always running out to the doctor or nurses with every minor thing. I think that both of us are feeling this nonpressure pressure. We have no idea what life is going to be like. I can't help but think that Jarrad and I are going to be all right but everyone keeps saying how brave we are or that we are amazing- I know it is weird but it makes me think that they all know something that we don't. I feel stupid. It is hard to think that we are going to be alright when I feel like people know so much more about this situation. Do they know something I don't?
Even this blog seems to be stuttering. There is no eloquence to it.
Tuesday, August 7, 2012
attempt to be positive
When I was in my late teens /early 20's, I hated Oprah. My sister and I would go on trips or plan on doing something and inevitably, Oprah would have an episode where some poor girl was kidnapped or lost in the desert or robbed and my mom would instantly think that would happen to us. I remember one time she saw an episode about a child abduction case and told us not to go to the bathroom alone. You know, because someone would make us - in our 20's - put on boy clothes and walk us out under the noses of the security guard.
I am not saying this to make light of the above situations - they were very serious and my mom worried about us. I say this because sometimes our fears for our loved ones makes us very aware and very worried and sometimes, the worries get the better of us.
One thing that Oprah did do that I appreciated was her practice of writing 5 good things that happened to her on a daily basis. I think this is a very biblical practice. It is also a very hard thing to do. See, when you think of those things that are good, you "dwell on it" and that in turns forces you to praise God. Because everything that is good comes from Him. It also makes you realize that your worries are not so big when you look at your blessings and it makes it just a bit easier to give said worries to God because you have proof of His love and care for you. Kind of funny how that works.
Jarrad sent me a devotion today and one phrase struck me - our trials aren't about us but about how others see God working in our lives. Part of that is our attitude toward our trials. Job refused to curse God. And he was a man of many trials.
Which brings us to my posts. I know I am allowed to express myself fully. I need to. It is cathartic and necessary for my sanity but I need to also express the positive that occurs in this situation.
So positive:
1. Friends - OH MY! I have fabulous friends. WE have fabulous friends. Jarrad's beer club friends have set up this bottle auction and it is just taking off. Every time I read something about how this restaurant or store or person did this or that, I am just amazed at how God is working on the hearts of people. Our friends have surrounded us with amazing love and support. I shake my head in awe at the amazing people who love us.
2. Family - I am living at my parents' house. Every weekend, I sleep at my sister's. If I need to be with Jarrad, I can go. My brothers and their wives check up on me and visit Jarrad. AND my siblings' in-laws have offered help. I can stay at their houses or if I need something, I know I can call them. Periodically, I get cards with gifts that are "just for me". All I can say is - wow.
3. Talking to a psychologist - yes, I did it. I know, a bunch of you (all those family and friends that I love) have somewhat subtly and not so subtly have told me to talk to someone. Well I did. And it helped - happy now?? It was good and you were right. blah - sticking my tongue out at all of you!
4. Jarrad - Do I need to explain? I love him and am so very, very amazed that he loves me and we are together.
I know that is only 4 but I think 1 and 2 are multiples. So that counts as more than 5.
Ahh, see it does make me feel better. I have so much to be grateful for.
I am not saying this to make light of the above situations - they were very serious and my mom worried about us. I say this because sometimes our fears for our loved ones makes us very aware and very worried and sometimes, the worries get the better of us.
One thing that Oprah did do that I appreciated was her practice of writing 5 good things that happened to her on a daily basis. I think this is a very biblical practice. It is also a very hard thing to do. See, when you think of those things that are good, you "dwell on it" and that in turns forces you to praise God. Because everything that is good comes from Him. It also makes you realize that your worries are not so big when you look at your blessings and it makes it just a bit easier to give said worries to God because you have proof of His love and care for you. Kind of funny how that works.
Jarrad sent me a devotion today and one phrase struck me - our trials aren't about us but about how others see God working in our lives. Part of that is our attitude toward our trials. Job refused to curse God. And he was a man of many trials.
Which brings us to my posts. I know I am allowed to express myself fully. I need to. It is cathartic and necessary for my sanity but I need to also express the positive that occurs in this situation.
So positive:
1. Friends - OH MY! I have fabulous friends. WE have fabulous friends. Jarrad's beer club friends have set up this bottle auction and it is just taking off. Every time I read something about how this restaurant or store or person did this or that, I am just amazed at how God is working on the hearts of people. Our friends have surrounded us with amazing love and support. I shake my head in awe at the amazing people who love us.
2. Family - I am living at my parents' house. Every weekend, I sleep at my sister's. If I need to be with Jarrad, I can go. My brothers and their wives check up on me and visit Jarrad. AND my siblings' in-laws have offered help. I can stay at their houses or if I need something, I know I can call them. Periodically, I get cards with gifts that are "just for me". All I can say is - wow.
3. Talking to a psychologist - yes, I did it. I know, a bunch of you (all those family and friends that I love) have somewhat subtly and not so subtly have told me to talk to someone. Well I did. And it helped - happy now?? It was good and you were right. blah - sticking my tongue out at all of you!
4. Jarrad - Do I need to explain? I love him and am so very, very amazed that he loves me and we are together.
I know that is only 4 but I think 1 and 2 are multiples. So that counts as more than 5.
Ahh, see it does make me feel better. I have so much to be grateful for.
Saturday, August 4, 2012
and the way it is
This week, I took my kids to my oldest friend's house. No, she is not old. We have just been friends for over 30 years. Amazing. I have known her for that long. Some friends come into your life and stay there for a while, then fade into the past. The trick is for them to fade with good memories, if a bit regretful that they are no longer a major part of your life. Then there are friends that you may not see but once a year and only talk to every 3 or 4 months. Those friends are the ones that are great.
We sat on her front porch of her beautiful house with its pastoral view while our kids played and talked about it. I even commented that we had been talking for 3 hours without any awkward social pauses that you use to think of something else to talk about.
And then we went inside to find that I had 10 missed calls and she had a message on her machine to call Jarrad.
Shit.
Sometimes, the only word that can express how you feel is a bad one. I tell my kids that grown ups use bad words because they can't have a temper tantrum and cry. They don't have the luxury. Usually, they have to deal with whatever has come up and that bad word is 20 minutes worth of kicking and screaming and the time out you get to calm down.
Still, it doesn't stop the tears that come. I think I am getting better at composing myself. It only takes about a minute and then my voice is back to normal and my eyes, while green (I have hazel eyes; they change color with strong emotion), are dry.
That day, all I felt was guilt. Another good thing about friends is that they get what you feel. We had talked about my divided guilt. Be at my parents' house with the kids but feel guilty for not being with Jarrad. Be with Jarrad or worry about my kids wearing my parents' out. This is all self inflicted guilt too. Both Jarrad and my folks are great. But is doesn't stop me from feeling guilty.
Oh, and get this, apparently my "devotion to Jarrad" has been commented on because I am there all the time - 3 days a week is all the time??? That is really sad and I feel guilty for not being there more???
Anyway, to go back to why I felt guilty on that day.
Jarrad had swelling in his legs. Enough so that the nurses scheduled him for some tests. I think they didn't want to alarm him so they kind of made it seem like no big deal and didn't give him any concrete answers - just "oh, we just want to see . . . " or ". . . just need to rule out . . ." With Jarrad, that is not good. I have told you that Jarrad is a pessimist by nature? So his head immediately goes to bad places. He needs to have everything laid out before him so he knows what is going on. He can tell you all medications that he is on, the dosages, and the side effects.
What he needed was me to calm him down and talk to him about some of this stuff and I was outside enjoying the sunshine and laughter of our kids.
Shit.
I know what you are saying, "That is not your fault." and other sentiments to that effect. Guilt however, is self -inflicted. It doesn't have to make any sense. It is not logical.
Jarrad and I had agreed to not look back but how can I not? How can I not look back and say all the "if only's". If only I had called it quits for the day. If only I had stayed there. If only I hadn't pointed out the blobs. If only I had insisted that he check the ladder. If only I had more faith, God would have preformed a miracle or not allowed this to happen in the first place. If only I didn't want that damn house painted. If only, if only, if only.
Again, I know that this is just a cycle of grief. I know that there was nothing to be done. I even know that God has a plan. Jarrad believes it. His strength and determination is astounding.
It is so hard to make that transition from head to heart knowledge and there is only so much one can take before they have a temper tantrum with all of its definitions.
We don't know for sure what has caused the swelling. We have ruled out the obvious causes - blood clot and bone growth and we (Jarrad and I) think it is his new meds. But a roller coaster of emotions leaves you exhausted and susceptible to negative thoughts.
Anybody got a pair of ruby slippers I could borrow?
We sat on her front porch of her beautiful house with its pastoral view while our kids played and talked about it. I even commented that we had been talking for 3 hours without any awkward social pauses that you use to think of something else to talk about.
And then we went inside to find that I had 10 missed calls and she had a message on her machine to call Jarrad.
Shit.
Sometimes, the only word that can express how you feel is a bad one. I tell my kids that grown ups use bad words because they can't have a temper tantrum and cry. They don't have the luxury. Usually, they have to deal with whatever has come up and that bad word is 20 minutes worth of kicking and screaming and the time out you get to calm down.
Still, it doesn't stop the tears that come. I think I am getting better at composing myself. It only takes about a minute and then my voice is back to normal and my eyes, while green (I have hazel eyes; they change color with strong emotion), are dry.
That day, all I felt was guilt. Another good thing about friends is that they get what you feel. We had talked about my divided guilt. Be at my parents' house with the kids but feel guilty for not being with Jarrad. Be with Jarrad or worry about my kids wearing my parents' out. This is all self inflicted guilt too. Both Jarrad and my folks are great. But is doesn't stop me from feeling guilty.
Oh, and get this, apparently my "devotion to Jarrad" has been commented on because I am there all the time - 3 days a week is all the time??? That is really sad and I feel guilty for not being there more???
Anyway, to go back to why I felt guilty on that day.
Jarrad had swelling in his legs. Enough so that the nurses scheduled him for some tests. I think they didn't want to alarm him so they kind of made it seem like no big deal and didn't give him any concrete answers - just "oh, we just want to see . . . " or ". . . just need to rule out . . ." With Jarrad, that is not good. I have told you that Jarrad is a pessimist by nature? So his head immediately goes to bad places. He needs to have everything laid out before him so he knows what is going on. He can tell you all medications that he is on, the dosages, and the side effects.
What he needed was me to calm him down and talk to him about some of this stuff and I was outside enjoying the sunshine and laughter of our kids.
Shit.
I know what you are saying, "That is not your fault." and other sentiments to that effect. Guilt however, is self -inflicted. It doesn't have to make any sense. It is not logical.
Jarrad and I had agreed to not look back but how can I not? How can I not look back and say all the "if only's". If only I had called it quits for the day. If only I had stayed there. If only I hadn't pointed out the blobs. If only I had insisted that he check the ladder. If only I had more faith, God would have preformed a miracle or not allowed this to happen in the first place. If only I didn't want that damn house painted. If only, if only, if only.
Again, I know that this is just a cycle of grief. I know that there was nothing to be done. I even know that God has a plan. Jarrad believes it. His strength and determination is astounding.
It is so hard to make that transition from head to heart knowledge and there is only so much one can take before they have a temper tantrum with all of its definitions.
We don't know for sure what has caused the swelling. We have ruled out the obvious causes - blood clot and bone growth and we (Jarrad and I) think it is his new meds. But a roller coaster of emotions leaves you exhausted and susceptible to negative thoughts.
Anybody got a pair of ruby slippers I could borrow?
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