Marriage Therapy: Take 2

Armed with our last month of Ricardo’s disability money, and fueled by the flames of anger and frustration from poor choices on both sides of our marital fence, we started marriage therapy again this year (we gave it a shot about 15 months ago and it just wasn’t time yet…for a lot of reasons). Great decision! The new psychotherapist has been what we needed. He’s fair, balanced, and really does know what to say a lot of the time.

I’ve been feeling really ready to move forward. I have been angry with Ricardo since he left the church suddenly in August of 2011 and then more angry about  some things that have happened since. Then I got angry enough I did some things that hurt him and made him angry. Anyway, it’s time to start healing and moving forward and Ricardo and I are both on the same page in feeling that way.

So here are my 💡👂🏻📢 lightbulb moments–the moments I am learning and changing–as we have talked about our religious differences. This is the third therapy we have talked about religion.

Me: “Okay, I’ll start. I’ve resented Ricardo for so long. I’m ready for us both to do what we need to do to move forward.”

Therapist: “You say you resent Ricardo. Now, every action we make has a reason. For every thing we choose to do, there is a consequence and a pay off. Why are you choosing to resent him?”

Me: (Feeling caught off guard and a little defensive) “I don’t WANT to resent him, but I have been really unhappy because of the choices he made, and I want him to make restitution. If he tried to give me back some of what he has taken, or tried to make me happy in other parts of our life, then I’d feel like he really was trying to make good on his promises to me, and I think I’d be able to stop resenting him.”

Therpaist: (ignoring the second part of what I said) “There’s a payoff for everything we do. What is the payoff in you resenting your husband? What are you getting out of that?”

Me: “Ummm, I don’t know. I get frustrated and angry.” (The thought occurs to me that maybe, deep down, I hope that in resenting him and being unhappy, he will eventually realize how miserable this has made me, and try to change things and make it up to me.) While I’m still formulating this thought, the therapist responds,

Therapsit: “And how is that working for you?”

Me: “… … … Yeah, it doesn’t really work. I need to stop resenting him…I don’t know how to just let it go though. It’s not fair for me to just give up everything he promised me and I just have to be fine with it.”

Therapist: “You’re not going to get 100 percent of what you want. People have this fairytale image of what marriage will be, but a marriage is two different people, with different needs, who are both going to change. You aren’t going to get 100 percent of what you want.”

Ricardo: “Yeah, I have been trying to say this for a long time.”

Me: (obviously I’m not going to get 100 percent of what I want. I think I would have failed at marriage a long time ago if I expected to get 100 percent of what I want.) “I know I won’t get 100 percent of what I wanted in regards to religion. I know I won’t even get 50 percent of what I expected. But can’t I get everything that Ricardo feels he could possibly give me, since he isn’t going to be able to give me even close to what he promised?”

Therapist: “But all you are thinking about is you.”

Ricardo: “Yeah, I mean he’s right. There are two of us, and you’re only thinking about what you want and not getting what you want.”

Me: “But there are two of us, and he never compromised. There was never this conversation where we decided what would change and what wouldn’t. He just came to me and said, ‘I’m leaving the church, I can’t do it anymore, and there’s nothing you can do to change my mind.’ Then he started doing whatever he wanted, even things he had promised me he would never do, like drink alcohol.”

Ricardo: “Yeah, but it’s not like I became an alcoholic. I drink like a drink here and there, I do it occasionally, not all the time, which is okay.”

Me: “I mean I get that now, but in Mormonism, it’s black and white, and alcohol is black. Maybe drinking in moderation was morally okay in your mind, but to the Mormon I was when you suddenly and completely turned your back on the church, there was no acceptable amount of alcohol you could drink.”

Therapist: “Well maybe Ricardo never apologized for the pain he caused you in leaving the Mormon church.”

Ricardo: Apoloizes very sincerely.

Me: “Thank you. I do know you feel bad about hurting me when you left the church. You have always felt bad, and you have apologized before. And thank you,” (Turning to look at the therapist), “but I feel like it’s one thing to say you’re sorry and…it’s like they say in ‘Daniel Tiger‘ that my son watches, ‘Say you’re sorry, then, how can I help?’ Ricardo hasn’t ever really changed anything to make it better. Sorry is nice, but I want him to actually make changes.”

Therapist: “What is it you wish he would do?”

Me: (looking at Ricardo) After you left the church, you just changed so many of the rules of our marriage and expected that I should be fine with it, and I wasn’t. I wish you would have tried to keep more parts of our religious life in tact. You were breaking these huge promises you had made me and I wish you would have recognized that and tried to make it up to me and tried to leave as much in tact as you could have.”

Therapist: “What do you wish he had done?”

Me: “I don’t know. Maybe he could have kept doing some things that he wasn’t SO against. Maybe he could have come to church with me sometimes, even if he didn’t like it. Maybe he could have still had prayer with me and with the family, read scriptures with us, and had FHE even if he didn’t believe in those things.”

Therapist: “That’s what YOU want, what about what Ricardo wants?” (Ricardo nods his head in agreement.)

Me: (feeling a bit irritated…) I know he wants nothing to do with religion and Mormonism, but he promised me this life in the church and then he broke that promise. HE is the one that took everything, that changed all the rules, that refused to compromise, and now I want to go back and make the compromises, but HE’s the one who needs to give in the this case because he’s the one who took everything and broke his promises. I gave up too much. I want him to try to make it up to me. Maybe it can’t be even close to the same but he maybe he can try… …I don’t know, maybe we can live by my family and they can give me more religious and emotional support, and that’s something I want, that’s a way he could try to make my life better, things like that.”

Therapist: “That’s selfish though. Marriage is about two people, and you’re thinking only about yourself. That’s what YOU want. What does HE want?”

Me: (trying to understand what he’s suggesting, but mostly feeling irked that he sees me as selfish. How can I possibly be selfish when I gave up EVERYTHING when Ricardo left the church? I stayed by him when he broke hundreds of promises he had made? I stayed when he decided he was going to live life however he felt best, even if that wasn’t good for me at all! Isn’t it kind of okay to say enough is enough? I gave up too much and I’m not okay with it? Give me back whatever you can possibly give back and try to make the rest up to me in other ways?) “… Uuhhhh…he wants me to accept his decision to leave the church and he wants to be free to live his life religiously however he feels best. I get that, but…” (I go on to repeat what I had just said about fourteen times–HE broke the marriage contract, isn’t HE the one who makes amends on this one? Etc, etc.)

Therapist: “There are two valid viewpoints in a marriage, yours is only one” (looking directly at me).

Me: “I get that, but maybe I’m not understanding because I’m not convinced.”

Therapist: “Would you want your husband to do something that made him uncomfortable, something he feels is wrong, just because you want it?”

Me: (I mean, you don’t force each other to do uncomfortable things, that doesn’t seem right, I guess, no. But then, you do do things for each other that are uncomfortable. I moved to Maryland for him even though it was uncomfortable for me…) “I don’t think he should do things he is really uncomfortable with, but being married does kind of seem like it requires both people to sacrifice and do things for each other that are a little bit uncomfortable. I want him to do the things he feels are LEAST uncomfortable” (and I launch into expressing my same opinion for the fifteenth time in just slightly a different way that he needs to make sacrifices to make things better since he was the one who left the church).

Therapist: “It’s true that someone has to take out the trash, and someone had to do dishes, and you both do a little and find a way to kind of share what’s uncomfortable. It’s give and take and compromise.

“Okay, let me tell you a story. My wife was Presbyterian, I was Jewish. When we decided to get married, my mom said to my wife, ‘I want Michael (name changed) to keep his faith,’ So my wife started attending my temple. When we moved here, far from family, my wife became really lonely. She loved me, but I wasn’t enough. She needed a community. My people weren’t her tribe. She had made a commitment to me and my family to attend my Jewish temple, and all of my sibling’s families were active in the Jewish faith, so I expected that’s how we’d be. Because I love her, I wanted her to be happy and I could see that she was miserable, so I said, ‘honey, why don’t you go find another church?’ The Methodist church close by didn’t work for her, but eventually she tried the Unitarian church and she found what she needed there. After a while, she asked if I would attend once with her. At first I went just for her. Each time I went I kept expecting something to be said that would really offend me, just like every other church I had been in, but that never happened. 30 years later, we still go to the Unitarian church.

“Was this what I expected when we got married? No. Was this what my wife agreed to when we got married? No. But people change, and needs people have change too. At some point my wife needed things that didn’t agree with what she had promised. The long term sustainability of a marriage is based on how much change a marriage can endure.

“So, Alicia, at some point being Mormon obviously stopped working for your husband and he decided he needed a change to be a happy person. Now it’s up to you to decide, is that problematic enough that you need to end this relationship? Maybe it is. Maybe this is just something you can never be okay with and you need to go look for the life you need elsewhere. Sometimes that’s what happens in a relationship. Is that the case for you?”

Me: Pausing, considering this very weighty question carefully, “…No, as far as I know, neither of us have ever truly wanted out of this relationship. I know I don’t. I just don’t want to keep doing what we’ve been doing. I don’t want to feel the way I have felt these last years. I want us to change, compromise, and move forward.”

Maybe the way I have been thinking about this all these years is wrong. I think the therapist is right, I mean, people do change, and for a marriage to last, you have to be able to endure those changes together.

Therapist: “That’s good. Why don’t you two try to come up with compromises and let’s talk about how you can do that next time we meet.”

 

After our therapy, I was lost in thought. I really have been thinking about this wrong all these years. I have seen it as, “you broke this promise, so it’s your job to fix it. And I broke that promise afterward, so I need to make that up to you.” Tit for tat. You break it, you make amends the best you can.

The therapist was right, retribution, resentment, it wasn’t working, it was only bringing pain, more anger, and not solving anything. We needed a new aproach. My battle to try to make things fair was digging us a bigger hole.

So what was he saying? What’s the right way to do things, since I had obviously been thinking about this wrong? There are TWO valid views, and mine was only one. You’re being selfish. Was I? People change, needs change. Then I thought about the story he told about his wife leaving Judaism. His response seemed right, but then why did it seem right? People have needs. People need certain things to be happy.

Needs. We both have needs and desires. We both have things that make us happy.

Ricardo needs certain things in life to be happy. He needs to live a life that is meaningful to him and not participate in religious practices that seem offensive. That’s something he needs. I have needs too. I need a spiritual life as a couple, as a family, and by myself. I need meaningful spiritual rituals. I need a spouse who is bringing morality into our home.

Then it sank in, it’s not about he took x amount, so he gives me x amount back, and if he won’t give x back, then I take x amount from him. That had been a disaster. It’s about both couples having equally valid needs and desires and trying to compromise in such a way that BOTH spouses are getting as much of what they need as is possible. And over time those needs might change. I drove away from therapy with this new realization.

We ended up going to Popeyes for lunch. For the first time I let myself start to think about real compromises. Thinking about what I needed, rather than how much I had lost helped me come up with some ideas of things that could actually work for both of us.

Me: As we sit down to eat, “Maybe we could spend time in nature. I know some people find nature to be very spiritual, and I definitely relate to that. I know you’re not big on outside activities though.”

Ricardo: “Yeah, we might could try that.” “What about you going two weeks with me to the Unitarian or Catholic Church and I got the other two weeks to your church?”

Me: “Would you actually do that for more than a week? Also, I think if I was only attending my ward half the time I would start to lose the consistency and the sense of community. Ever other Sunday might be too much for me. But maybe once a month we could go somewhere like the Unitarian church, and once a month we could all go to the Mormon church together, and then the other weeks we canto separate ways.”

Ricardo: “Yeah, maybe.”

Me: Suddenly having a burst of new ideas, “Or what about having Family Home Evening once a week, even having a lesson about some subject related to morality–like honesty, or service–whoever is teaching  could pull material from where they like, whether that’s scriptures or other inspiring words or TED take or whatever. We could still do the lesson, a treat, and then maybe a service activity or some family activity that is really wholesome. I think that would help me to feel like you are a spiritual leader in our home. I also think it would help to establish this sense of ‘this is what our family stands for and believes’ and I feel like we have lost that.”

Ricardo: “Yeah, I think that could work.”

Me: “We could do the same sort of thing with prayer. Maybe we don’t pray anymore, since you don’t necessarily believe in God, but maybe we can have some quiet, mediating, sort of time, followed by expressing our gratitude and desires.”

We went back and forth talking about different ideas we had. It was the first time in a very long time I felt hopeful that we could both actually be happy with relation to our religious life. I started to accept, just a little bit, that what I need religiously has also changed some.

I remembered the last thing the therapist said as we were walking out the door, “Find something that works for both of you. It will be different than what you originally wanted. It might not be what your family would have chosen, but they’ve never been you, and they’ve never lived your experiences. Find what works for your family.”

I kind of breathed that last thought in as Ricardo cleaned our table and we got up to leave. I hugged him tighter than I have in a long time, then I got in my car, and drove back to work.

 

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The 5 Best Things About Traumatic Brain Injury

 

  1. Sympathy. Ever have a day when you just don’t think you can live another second without pity? Your solutions is spelled TBI. Never again will you be one-upped for the “biggest sob story” contest. You hold the trump card, my friend. Use it wisely and often.
  2. A great excuse–for everything. Forgot your homework? Too weak to shovel your walk? Didn’t feel like having the same conversation with your spouse for the umpteenth time? No problem. You have a brain injury. Your days of needing a dog to blame for eating everything are gone.
  3. Money. You’ll never need a job again now that you get government disability! Your days of earning dollars by the sweat of your brow are happily over. Find your dream home and enjoy early retirement. Now your only decision left is, tent city or trailer park–just hope you have a rich relative that can spare you some money to buy a tent!
  4. More time at home. Are you tired of the go, go, go and ready for a little downtime at home? Traumatic brain injury may be the right choice for you! No more sixty hour work weeks, no more commuting, no more hustle. In fact, with a little luck you may hardly leave the house again!
  5. Attention. Have you been ignored too much for too long? Do you find yourself wishing you had a servant, or at least a maid? Look no further. With a TBI, you may never clean a again! In fact you may be free of many of those tasks that are mundane and downright ordinary. Being hand fed, bathed, wiped, and moved from place to place–life doesn’t get much better than that. Even the most spoiled baby will be green with envy from all the attention you will command.

Why wait? Demand a brain injury today! You’ll hardly be able to believe the dramatic change it will bring to your life in such a short time!

Humor is the best medicine 🙂

DSCF2869

The innocent smile of someone who is unknowingly about to enter the world of traumatic brain injury.

*In full disclosure, my husband is the one with the Brian injury, not me.

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Change in the Air

The recent policy change in the church surrounding children of gay parents has made me think a lot this weekend.

This season of my life has been a season of a lot of changes. Four-and-a-half years ago I wouldn’t have batted an eye at this announcement, but right now it has been a hard thing to read. I’ve had a couple of nights to sleep on it. I guess here’s how I feel: this rule makes it harder for individuals and families to make the choices that are right for them, not easier. I hope the church realizes that and changes it’s policy.

This policy really doesn’t effect me personally much. But it does make me feel like more of an outsider. If children of gay parents have to disavow the practice of gay marriage and cohabiting before being allowed to be baptized…where does that leave the other members of the church who are fine with the idea of gay marriage? Are we all free to support gay marriage and still participate fully in the church? Is it enough to just say, “I’m not going to marry someone of the same sex, but I understand everyone needs the ability to make the choices that are best for them, and I think gay people who get married are making a fine choice for themselves”? Life is too complex for these sort of hard-line rules.

This is the excerpt from the interview with Elder Chistofferson regarding the new policy change:

Michael Otterson: Why are the children of these same-sex partners an issue here?

Elder Christofferson: Well, in answering or responding to your question, let me say I speak not only as an apostle in the Church, but as a husband, as a father and as a grandfather. And like others in those more enduring callings, I have a sense of compassion and sympathy and tender feelings that they do. So this policy originates out of that compassion. It originates from a desire to protect children in their innocence and in their minority years. When, for example, there is the formal blessing and naming of a child in the Church, which happens when a child has parents who are members of the Church, it triggers a lot of things. First, a membership record for them. It triggers the assignment of visiting and home teachers. It triggers an expectation that they will be in Primary and the other Church organizations. And that is likely not going to be an appropriate thing in the home setting, in the family setting where they’re living as children where their parents are a same-sex couple. We don’t want there to be the conflicts that that would engender. We don’t want the child to have to deal with issues that might arise where the parents feel one way and the expectations of the Church are very different. And so with the other ordinances on through baptism and so on, there’s time for that if, when a child reaches majority, he or she feels like that’s what they want and they can make an informed and conscious decision about that. Nothing is lost to them in the end if that’s the direction they want to go. In the meantime, they’re not placed in a position where there will be difficulties, challenges, conflicts that can injure their development in very tender years.

Compassion for the child is the reasoning the church is giving for this policy change. That sounds nice, it just doesn’t really make sense.

Is it going to be complicated for a child of a gay couple who would like to be a member of the church? Most likely, yes. Is it also complicated for children of straight couples where one parents actively dislikes the church and the other parent believes fully in the church. Yep. Is it complicated for me, as the wife of someone who actively dislikes the church, and as someone who has many doubts, to still have a strong desire to participate in the church. I certainly find it complicated. So I feel like there is no one right answer. Do I wish my friends and cousins who had part member families had been required to wait until they were 18 to be baptized? No. Membership and baptism in the church was a blessing for most of them. I feel like the same would be true for children of gay parents who were being raised in the church. If the kids are at church, there’s probably a good reason, so why prevent them from enjoying all the blessings associated with the church?

In my situation, Ricardo would rather my kids had nothing to do with the church. On the other hand, I attend regularly and I want our kids involved. He’s now very respectful of my reasons for wanting this. I have a really complicated relationship with the church, to the point where I am completely unsure if I would call the church”true.” This is still an ongoing process for me, as I figure out my spiritual life. But the church teachings about eternal families, temples, and a loving, involved God are rooted at my very core. My spirituality is very Mormon. It is also very meaningful to me. So take a look at my situation. We have a child–Andrew, with two parents, neither of whom is your typical Mormon. There are things going on in our home that are not congruent with church teachings because of this. Yet, Andrew was blessed by my father as a baby, he goes to church every week we are healthy and able, and at eight, I will probably want him to be baptized. It is setting him up for a complicated life to be sure, but do I think it would be better for him to be out of the church or to not have these ordinances done? Well, I must not, because we’re still going to church.

Life is complicated, but I can see thousands of situations where a gay couple with kids could be in this very same position. Maybe one partner in a gay couple has a strong testimony and dedication to a majority of Mormon beliefs, but sexuality was too important a part of their life to live a celibate life. Maybe they made the best choice they could for their situation and got married to a same sex partner they love, and yet they continue to find their spiritual life in the LDS church. I could foresee this couple wanting their kids raised in the church. This sort of thing actually does happen sometimes. I don’t see the point of preventing these kids from full participation in the church.

There are better ways to show compassion. How about primary lessons about baptism that include stories and examples of children who choose to wait or who are asked to wait until they are adults to be baptized, and how that is okay sometimes. How about young men’s and young women’s lessons that talk about reasons it’s okay to choose not to serve a mission. If it’s really about compassion, then the change should help the people we are supposedly showing compassion to, not hurt them or make their lives more difficult.

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A Christmas Letter From the Heart

DSCF5448055Life isn’t so bad 🙂

I read a quote the other day…something to the effect of, “life is messy, love it.” I think that’s a motto I’m embracing at the moment. This year life did get a bit messy. I didn’t love all of it. Ricardo didn’t love all of it. Honestly, it was a damn hard year for both of us, (hard enough I picked up a swearing habbit, ahem), especially him. But…But, we enjoyed a lot of really great things. Andrew grew from a 1-year-old to a 2-year-old, which was so fantastic. He now says things like “beetle,” and “l-d” (Ladie), and says lots of 2 word phrases like “‘mas lie please” (Christmas lights please–i.e. turn on the Christmas lights) DSCF5462and “moe raiz” (more raisins, which are his favorite food this month). All in all, I’d say we have a fantastic little toddler. He’s mild, gentle, sweet, and silly, which is everything I could ever ask for in a child. He also hits and throws fits and screams, and is a picky eater, and breaks Kindles–but he’s two, so that’s pretty standard. When he’s tired he usually wants to be tickled and sometimes he laughs so hard he can’t stand up. He dislikes bedtime, nap time, meal time, getting his nails cut, and Santa, and loves everything else in life 🙂 He loves going outside, playing at the playground, going anywhere with mom and dad, playing with cars, doing puzzles, and laughing. Honestly, this little human is amazing…I know I’m biased, but he is quite impressive and has an incredible little personality already. I have been so blessed by having him in my life, and I hope I get to have him in it every day of my life because he is wonderful.

Besides the amazing-ness that is Andrew…life has been pretty crazy. Financially things have been hard. We’ve pinched pennies, gotten charity from the church, from the government (a little bit–that’s it’s whole own story), from friends, and from family to get us through. We have had a LOT of financial help, and we are still barely scraping by. If you are one of the people who helped us emotionally, financially, or in any other way (including most recently two very kind secret Santas   ), just know that you made a huge positive difference in our lives this year! Financial strain is a stressful thing. I have gotten to experience bawling in my car after using WIC to get food and feeling humiliated the first time I had to use it (and yet I was so grateful to have it). I got over the guilt of that quickly, thankfully, but not being able to live independently isn’t a fun experience, and I’m sure many can relate since it’s an experience lots of people get to go through. The beauty of this year has been seeing the very best of humanity since so very many people have bent over backwards to help us get through this year. I have felt so loved by both people who hardly know us and by family and friends.

As hard as financial strain is, it has not been nearly as hard as the other struggles that have come from the stroke. Some of Ricardo’s most important goals in life are related to his career…which was put on hold in a major way due to mental and physical impairment. We’ve been going back and forth all year wondering whether Ricardo was actually going to be able to go back to his accounting career, but feeling it was important enough that we sacrificed everything, down to my mental sanity (sort of), to try to get him back to it. I can tentatively say that I think he’s going to get a shot at going back shortly, which is HUGE news!

On top of worry about Ricardo’s uber important career goals, there has been the fact that Ricardo’s brainy-ness is pretty much a core, central part of his self-worth and identity, and suffering brain damage has been really hard because I think it has caused him to wonder if he is no longer the genius he once was…it’s hard to lose a part of your identity to some extent and wonder who you are now. I imagine that deep down that it what Ricardo is going through. These changes have been hard on me as well.

And what sorts of changes has he undergone? That is a long story. A very, very long story, some of which I have already mentally blocked, so I couldn’t tell it to you if I wanted to, haha. It started with complete loss of nearly everything, and got better from there, to sum it up 🙂 DSCF3265He has worked so, incredibly hard to regain things he already had. But at some point this year we have questioned things like, “Will Ricardo ever be able to move the right side of his body again?” and “Will Ricardo ever remember his family again?” I dare say those are some tough questions to ponder. Luckily, he has had a miraculous recovery.

Having said that, every day he faces the reality that he has brain damage.

It is quite possible that he’ll have to rely on external memory aids heavily for the rest of his life in order to function normally. He remembers a lot of important things–like doctors appointments–now, which is excellent! And he forgets a whole lot of everything else, which is tough. Luckily we live in a day of video and audio recording, electronic gadgets with cool calendars, note taking gadgets, and bells and whistles, and cool memory apps–so even living with major memory issues is more hopeful than it once was.

Learning to use all that consistently is a goal for 2015.

The hemorrhage also effected a lot of other brain functions, and that has been tough.

Amnesia, aphasia, executive functioning problems, these are the things that continue to haunt Ricardo post-stroke, though he has made tremendous strides. But having to relearn things that were second nature before, is a demeaning and frustrating task. And it is frustrating for the person trying to help someone relearn those tasks as well.

We have gotten to experience the true meaning of “for better or for worse” and “in sickness and in health.” You don’t really expect that at 26 and 30, but we signed up for marriage intending to be in it together for eternity, and I expect that we will get through these bumps together. I’m lucky enough to still have his love, and it is a truly incredible love to have, and that is the most important thing. We still have what we value most, and I don’t plan on giving up on our love anytime soon 🙂

Having said that…life is messy sometimes, and I have been a mess. I haven’t been as great or as supportive as Ricardo could have used. I am strong, but I have felt pretty broken this year.

So what has this year been like for me? Well…

I got to walk around a lake with a person I thought might never walk again…and I had to remind Ricardo 100 times how to use a new device on the TV when I thought I would never have to remind him of anything, he had such a fantastic memory.

I got to experience the truest love from someone I thought would never remember me again…and I had to face the reality that he has probably forgotten a lot of what we experienced together.

I got to hear someone say, “hi love,” who I thought would never understand human speech again…and I had to spend months desperate to know what Ricardo was thinking since he couldn’t express his thoughts.

I got to hear the heartbeat of one of the very most important people to me who I thought I had lost…and I got to hear that same person get frustrated at me 20 times a day while I tried to help him relearn things he didn’t even understand he needed to relearn.

…And we saw cathedrals, monuments, and parks. We spent time with friends, family, and pets. We walked, and talked, and laughed a lot despite life’s challenges. We watched movies, went on a few awesome dates and trips, and got to try some new things–like paddle boarding, which was a lot of fun for Alicia. We picked up old hobbies–Alicia has been getting back into music, and Ricardo has been figuring out video games again–and we all learned new skills. And we did a whole bunch of other really great, normal things 🙂 Alicia got a job. Ricardo got to experience being a stay-at-home dad. And we got to experience a million blessings that we don’t even know we have because we just take so many of the good things for granted. Life has overall still been pretty good.

This has been a hard year. This has been a year of miracles. It’s been a good year and a terrible year all in one. I could tell a thousand frustrating stories about what this year has been like, in fact, if you ever have an hour, I’d love to tell you some of those stories 🙂 And I could spend an hour crying about how lucky I am 🙂 I guess that’s life.

I’m glad we’re all still alive, and I mean that wholeheartedly 🙂

I hope 2015 is everything you hope it will be! And I hope that when it isn’t, you’ll give me a call and I’ll hopefully lend a compassionate ear and then maybe we can laugh about our problems at the end 🙂 Life is so hard sometimes, and yet it is so very beautiful. Thanks for being a part of that beauty!

Love,

Alicia (and Ricardo, Andrew, Ladie, and Allie)

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Stroke Timeline

Here is a timeline of this year.

Dec 17- Ricardo’s stroke
Didn’t know if Ricardo would survive
Likely he would never leave a vegetative state
No control over body movements
In an induced coma
Unsure if Ricardo was mentally there still
Living moment to moment, trying to keep his ICP, blood pressure, and body temperature under control
Induced coma, often induced paralysis nearly constantly to keep him calm

Dec 18-
Ricardo squeezes Alicia’s hand

Dec 19-
Ricardo begins squeezing nurse’s hand on command at times. He’s still in there!

Last week of December-
Ricardo has regained enough muscle coordination to scratch his face with his left hand
Right side may be paralyzed
Body temperature begins to drop below 104 degrees
EVD brain drain is removed. Ricardo doesn’t need a shunt!

First week of January-
Ricardo gets a tracheostomy and is able to be awake more.
Starts to move his right side again.
Begins to sit up with a lot of support.
Facial expressions consistent with his normal personality.
Starts answering a few questions with head nods. Knows some facts still.

Middle of January-
Leaves the ICU and goes to intermediate care
Awake more. Interacting more.
Has no memory of events or people prior to stroke.
Begins relearning activities starting with brushing teeth and hair.

End of January-
Moves to Rehab Hospital
Stands with assistance
Memories beginning to come back

February-
Sees Andrew for first time
Gets trach tube out and speaks for the first time!
Has moderate to sever aphasia. Has difficulty naming basic objects. Speaks very slowly.
Starts to walk and climb stairs!
Begins writing.
Comes home!

March-
Starts out patient rehab
Able to pick up Andrew
Can do very basic math

April-
Walks normally
Beginning to remember his appointments day to day and the most important things
Remembers his wedding day for the first time

May-
Angiogram confirms the AVM is gone!
A doctor shakes Ricardo’s hand and tells him he wants to be able to tell his children he met Ricardo.

June-
Can initiate basic tasks on his own like eating and drinking
Begins helping care for Andrew
Finishes physical and occupational therapy
Speaks at a normal pace. Remembers common vocabulary. Aphasia is down graded to mild to moderate.
Expressive communication still very difficult

July-
Flies alone to Mexico!
Memory, speech, and cognitive abilities continue to improve

August-
Begins caring for Andrew alone while Alicia works

September-
Is able to communicate some of his thoughts
Able to tell people he had a stroke and explain what he did for work–expressive communication is improving

Ongoing

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One Year Anniversary of the Stroke

I compiled a few of the updates I gave people as the stroke progressed. I think they are very insightful and give a glimpse into what our life was like when his stroke happened.

Nov 22, 2013:

Hola mi hija, estamos al pendiente de tus informes, todo va a salir bien. Los queremos mucho

Tu Mami Lupita

Nov 23, 2013:

I think enough people are worried that I’ll go ahead a post a public update. Ricardo is in the ER. He has an Arterior venus malformation which is causing build up of fluid in his brain. We just found out today. Most likely he will need surgery, possibly tomorrow, and of course brain surgery is always a bit risky. We appreciate any prayers and good thoughts our way. We’re in Johns Hopkins, which is a great hospital and we are feeling nervous but pretty positive.

Nov 23, 2013:

It seems the cranial pressure is not so severe at this point, so they are going to observe Ricardo until Monday and then run the additional tests before deciding on a course of action. This should be a good thing since they will have the extra time to make sure the treatment is the best possible option for Ricardo (probably still surgery, but we don’t know yet).

Nov 25, 2013:

He just had an Angiogram done. We will find out the results today. All they said while he was in it was that they didn’t see anything they didn’t expect…whatever that means. We were told this morning that the Arteriovenous malformation is in his thalamous, which would make operating difficult since it is deep in the brain. Other than that, we don’t know. They may do surgery or they may try some other treatment. We are still waiting to find out. He’s doing well though. His pains are pretty minor thankfully, some headaches and dizziness.

Nov 25, 2013:

We are still waiting for the results from the angiogram Ricardo had this morning. The nurses told us they are currently discussing it and making sure they all agree with the plan. They will tell us what that is tomorrow morning I guess. It looks like probably no procedure tomorrow, just news hopefully…

Nov 27, 2013:

So, good news and bad news about Ricardo. The good news is that his condition is fairly stable, and he is home as of a couple hours ago, and doing well (off and on moderate headaches and some blurred vision, but mostly feeling pretty normal). The other good news is that we have time to talk to doctors and make sure we do the very best possible things.

The bad news is that it looks like we are in for a longer road than initially expected. He is going to need at least one surgery to remove the pressure on his brain. He also will either need a second procedure that carries more risk or he will have to permanently accept a higher risk for a severe stroke.

So, mixed news, but he is doing well and we are enjoying our Thanksgiving now with his family

Nov 28, 2013

I am thankful today to be with family, especially my husband, having thanksgiving dinner together at home

Dec 6, 2013

It’s been a stressful day. I have learned a few things throughout these last few crazy weeks. First, I hate red tape at certain hospitals. Also, I hate red tape and stupid rules with certain insurance companies. But, I love having such supportive and kind people around us. Thank you Ale, Ma., all of my family members and friends, those who have watched Andrew and walked our dogs, and called and texted and cared, but especially thank you Dusty who has been a tremendous support, guide, and source of information. I’m also grateful for modern medicine that gives us great hope despite a delicate situation. It’s been crazy but we’re all doing pretty well all things considered

Dec 7, 2013

I wanted to give you the update on Ricardo.

Ricardo was scheduled for a surgery on Monday, but then my cousin got a team together in Denver and they reviewed his case and the neurosurgeons in Denver said they thought the procedure he was going to have done was a bad idea. So, at this point we are going to go get a third opinion on the 23rd. We’re going to go back to the Doctor at Johns Hopkins. We were pretty frustrated with that hospital because they have been very bad at communicating with us. But his specialty is in AVM’s, which is what Ricardo has, so we decided we will wait and go see the doctor. From what my cousin told us (who is a neurosurgeon in Denver), he feels like Ricardo would be better off having a gamma knife procedure. It takes two years, and he would be at a high risk for a stroke those two years, and he would possibly loose vision in his left eye, but he said he would take that risk over the risk of doing the embolization. He said an embolization on the part of the brain where Ricardo’s AVM is would carry a 10-15% risk of him loosing motor function-possibly his ability to communicate or move. So that’s why he felt it would be better to do the gamma knife and risk loosing his left eye’s vision. The other team of doctors though felt the embolization would be the better move and thought it wasn’t quite that risky. I guess we’ll see what Dr. Coon says on the 23rd.

Ricardo has had some increased symptoms though so we will have to see what happens. My cousin said that if Ricardo’s symptoms are a result of the hydrocephalus, then there are a number of possible treatments for the hydrocephalus itself that would be reasonable and not too risky. However, if the increased symptoms are a result of the AVM growing in size, then he would have to have the embolization, since that’s the only procedure that can be done in a short time. I left a message at Dr. Coon’s office at Johns Hopkins about his increased symptoms. Early next week we may be back there getting another MRI done to find out what is causing Ricardo’s increased symptoms.

It’s been a bit stressful. I am so grateful to have Dusty, my cousin though, and the advice of his team from DU, and also all the other great neurosurgeons and interventional radiologists around here. The team at Washington Medical Center has been great and very attentive. The team at Johns Hopkins has been very bad about communicating, I think because the hospital has a lot of “red tape” as far as strict protocols and rules about when patients get to see and talk to their doctors; however, they have one of the best specialists in AVMs, so we have decided at this point that we need to just be patient with all the silly rules so that we can go see Dr. Coon. We just want to make sure we are making the right choice before we proceed with either procedure.

Thanks for all your support and love.

Dec 15, 2013

Ricardo is scheduled for his first procedure Tuesday. I am asking for prayers and good thoughts his way. It is a bit of a scary situation. On the other hand, we do really like the team that is going to do the procedure and it is pretty much a miracle Ricardo had a symptom and they caught it before he had a stroke. There is much reason to hope. Still though, prayers are appreciated.

Ricardo is scheduled for his first embolization on Tuesday afternoon. Basically, they are using super glue to block off certain effected veins in his brain and shrink the size of the AVM.

We have been told that he has a particularly difficult case, with a very large AVM in one of the worst possible parts of the brain–the thalamus and basal ganglia. I don’t mean to be a doomsday-er, but I figure some people might want an understanding of what’s going on. The goal is to do 4-7 embolizations in the next month+ to reduce the size of the AVM, and then do monthly gamma knife treatments (pinpointed radiation) to resolve the problem.

The bad news is that this is a somewhat risky procedure for Ricardo–we’ve been quoted everything from about 3-30% of a severe complication from the procedures (it’s hard to put a number on it because these AVMs in this location are very rare). The good news is that, even considering that risk, he will most likely be fine, with minor permanent complications also a possibility.

He will continue to be at a very high risk for a severe stroke for about 2 years until the treatments are completely done. I wish that wasn’t true, but it unfortunately is.

It is pretty much a miracle though that Ricardo found out he had this. Less than a 4th of people with Ricardo’s specific AVM in that location have any idea they have an AVM until it has already hemorrhaged. In this respect, he is extremely fortunate.

Anyway, we have both good reason to be pretty anxious and also pretty hopeful. We do both appreciate any prayers and good thoughts. We are anxious to get through this next month and a half.

Dec 17,

Silvia Stubbs: I did talk to Rita about 3:00 our time and she told me that it was too soon to know how the surgery. Ricardo was still in surgery. She said that when she knows something she will posted here. Keep those prayers going I am sure this is very critical time. Love all of you guys!!! I know that Heavenly Father is in control. Chelsea Lyman: Initially the embolization went well, but after the surgery was done he had some bleeding and is now in critical condition and back in surgery. Pray everyone!

Dec 17, 2013

Alicia wanted me to update everyone. Ricardo is in an induced coma right now. He bled after embolization. From what I know they put something in to relieve the pressure, but it is a very critical situation. Alicia is probably not up for phone calls tonight, but keep her and obviously Ricardo in your prayers. Pray that she will have strength right now.

Dec 18, 2013

Ricardo is about the same. He is responding a little bit to pressure and possibly to voices. So those are good signs. He seems to be improving a little bit to me, but the next few days will be really critical. Please keep praying for him.

Dec 18, 2014

I’ll give the family a little more detailed info than I am posting on my wall. Ricardo suffered a very bad hemorrhage/stroke after his procedure yesterday. It was in the basal ganglia and possibly affected other parts of the brain as well. The implications of this are unfortunately very severe. Right now I am just hoping he will live, that his brain will stop bleeding, and then that it will heal as much as possible. He will almost certainly have disabilities from this, but I am just hoping for the very best possible outcome at this point. I really appreciate all your love and support. He is still in an induced comma, but they lower the dose periodically to see if he is able to respond. He does respond to pressure with some limited movement, and his eyes dilate. So he is very much alive. That much I can say.

Dec 19, 2013

I feel so much hope today! Ricardo’s cranial pressure has been mostly stable. He also has started trying to follow the nurses instructions when they wake him up briefly. He is fighting to live, and all your thoughts and prayers are helping. The next couple days will be very critical. Please keep praying!

Dec 19, 2013

Chelsea Lyman: Alicia gave me permission to share her last txts. This is what she told me a few minutes ago. “I was a wreck yesterday but since last night I have had so much hope. Last night he was coughing and they were suctioning saliva out of his lungs and he woke up a little bit. I swear he looked at me, he was trying to hold my hand, then when I gave him my hand he squeezed it. He was biting on the breathing tube and I told him not to bite down, and I swear he shook his head no, then I told him he needed to relax his mouth and he relaxed. I swear he is hearing me and knew me. I can’t tell you how much hope that gave me. Then today he was obeying the nurses instructions trying to open his eyes and squeeze their hand and move his legs. That is so huge. so huge. I know he’s still in a scary place, but I have so much hope at the moment. I’m praying for a miracle chels. I know ricardo wants to live so he’s going to give it all he’s got. And I think ricardo is being blessed. Keep praying!”

Dec 21, 2014

Jenny Johnson: I’m anxious for an update too. I think I heard that they might be bringing him out of the induced coma sometime today, and then they’ll know a lot more. Mom’s plane just left Denver.

Dec 21, 2013

I have an update from Alicia. “He was awake for a bit this morning but he is obviously very uncomfortable and in a lot of pain so he became pretty agitated. his ICP’s (intracranial pressure) goes up and his blood pressure goes up when he’s stressed so they have decided it would be better for him to remain sedated for a few more days. So they will just wake him up to do the tests. If his ICPs stay stable through the weekend they are going to do a tracheotomy on Monday. They said ricardo is able to breath on his own thankfully and his gag reflex is working, but his breathing and reflexes are not consistently good enough at this moment to leave him without support. Doc said the trach. carries a much lower risk of infection and pneumonia at this point than either leaving him on the respirator or leaving him with no breathing assistance. He said he shouldn’t lose his voice or anything and it is an easy procedure. It would just be temporary as well. So that’s the plan. I feel good about it. Ricardo has had a fever so they are going to work hard to control his ICPs and blood pressure. That and prevent secondary infection. We’re going to work extra hard to keep him calm. DOc said the next two weeks will continue to be pretty critical for him because this is the time there is a high reoccurrence of hemorrhage and also of infection (with so many holes and tubes in him). Ricardo is doing so well though. His brain seems to be running slow and his motor skills are slower and weak, but I am pretty certain his comprehension level of what is going on around him is almost completely if not completely in tact. Today I told him I was going to turn on television and he turned his head toward it and opened his eyes the widest I have seen him open them and watched tv until he couldn’t keep his eyes open. His mom talked about Andrew and he got visibly emotional (so we decided that ofr now are not going to talk to him about anything that relates to real life in any way–just news, sports, movies, and stuff that relaxes him). It’s a miracle though. His awareness seems to all be there. That was essentially impossible given the type and severity of hemorrhage that he had. So I can’t help but be hopeful and grateful. Right now they just have to continue stabilizing him. Once his brain pressure is no longer an issue then they will focus on rhabilitation (though I will help move his hands and legs and stuff so the muscles don’t atrophy).”

Dec 24, 2013

Chelsea Lyman: From what I know, they might do a tracheotomy today. They didn’t do it yesterday because he has had a high temperature so they are just trying to continue to stabilize him. He is still sedated as far as I know, but they bring him out of it occasionally to do some tests. They want to get the trach in so the respirator doesn’t bother him anymore.

Dec 24, 2013

These have been some long, hard days, but overall Ricardo is doing so much better than expected. We have had a few scares, but all of them have resolved quickly. it’s hard to pass Christmas this way, watching my poor husband suffer so much, but I can’t help but feel that it is a miracle he has survived the hemorrhage he suffered, and that he is as mentally alert as he seems to be. I cannot say this Christmas will be anything but miserable for me, and especially for Ricardo, but I am grateful that I got my Christmas miracle that my husband is alive and knows I am by his side.

Dec 24, 2013

Hi family,

These have been some long, hard days, but overall Ricardo is doing so much better than expected. We have had a few scares, but all of them have resolved quickly. The last 3 days they have had him on something called the arctic sun to control his fever. They say fevers are very common with brain injury but fevers potentially can damage the brain more. He shivers a lot with the cold pads that are on him though so they are keeping him even more sedated to prevent shivering. When they wake him up briefly he can still respond and move his fingers and toes when asked. This continues to give me a lot of hope and is a very good sign. It sounds like they will keep him sedated for the rest of this week except for occasionally waking him up to do neurological exams. Once his temperature is controlled and his Inter Cranial Pressure is more controlled then they want to do a tracheotomy temporarily so they can get him off the respirator. I can’t wait until they can do that because he is currently very miserable any time he is even sort of awake. It’s hard to watch. It will be nice to finally see him even a little more comfortable, no longer gagging on the breathing tube or shivering.

It’s been very difficult, and it’s hard to pass Christmas this way, watching my poor husband suffer so much, but I can’t help but feel that it is a miracle he has survived the hemorrhage he suffered, and that he is as mentally alert as he seems to be. I cannot say this Christmas will be anything but miserable for me, and especially for Ricardo, but I am grateful that I got my Christmas miracle that my husband is alive and knows I am by his side. And I am grateful to have Ricardo’s family here suffering with me, to have a very kind ward that has bent over backwards to provide support to us, and to have my sweet mother here.

Merry Christmas!
Love,
Alicia

Dec 25, 2013

[started the charity “Ricardo’s Recovery”. Didn’t even realice I was doing it on Christmas day, since every day was the same]

Dec 28, 2013

Ricardo is doing the same. It may be a couple more weeks before we will really have an idea of the damage that was done. The good news is that he has been pretty stable. They are still working on stabilizing his temperature. His inter cranial pressure has been better though the last few days. It is very slow progress but he is going in a good direction. Keep your prayers for him coming.

Dec 31, 2013

Asking for prayers again today…It looks like Ricardo may have an infection of some sort. Last night he was feverish and his blood pressure dropped way down.

Via Alan Stubbs:

For those who have not seen Alicia‘s post, here it is again:

“Asking for prayers again today…It looks like Ricardo may have an infection of some sort. Last night he was hypothermic and his blood pressure dropped way down.”

About 9:00 am, Dec 31, 2013

Then an update at about 9:15 am:

“I just talked to Ricardo’s nurse and they were able to stabalize his blood pressure and temperature. They are hoping he doesn’t have an infection but he might.”

Dec 31, 2013

Ricardo is stabilized again and hopefully they can keep him that way. We’ll pray it’s not an infection. They will have to wait a couple more days before they do the tracheostomy.

Jan 1, 2014

Ricardo does have an infection but the antibiotics seem to be working, so that’s good. I am home sick today but Ricardo‘s sister said he was more alert and responsive than he ever has been. I really think once they can get the trach and PEG done, and he has the tubes gone from his throat that we will see some huge advances in him. I’m praying they will be able to do that soon.

Jan 4, 2014

They finally got the tracheostomy and PEG done and it seems to have gone well! Yeah! I think this is going to be a huge step in the right direction since hopefully Ricardo will be more comfortable and then they can have him awake more. One more step in the right direction.

Jan 5, 2014

Missing this [picture of ricardo laughing with Andrew]… I can do this! Gotta be strong for both of these boys!

Jan 5, 2014

Ricardo is more awake and more relaxed now that the tracheostomy and PEG are done. He is a lot better without all the tubes in his throat. He has been moving his left side quite a bit. He still hasn’t been very responsive when asked to do things, but occasionally he has responded. He has a CT scan or MRI tomorrow morning and maybe that will tell a little more. I’m grateful they finally got the tracheostomy done.

Jan 6, 2014

I just chatted online with Alicia, and since I took her time I’ll share with you some of what she said (she asked me to update you):

Me: how is Ricardo today?

Alicia: he seemed really frustrated. I actually think he is pretty with it. Which is great! I was worried about that for a few days, but then last night and today he was trying to communicate a couple feelings to me with some gestures with his left hand. He kind of shrugged once, and he was pulling at the catheter that I think was painful for him, and then today he picked a movie he wanted to watch

How was the scan?

Alicia: they did a CT scan and all I know is that they said it looked like his brain was reabsorbing some of the blood and this scan looked better than the first two scans they did right after the hemorrage.

sounds like bits of progress to me

Jan 7, 2014

Today was such a good day for Ricardo! Huge improvements! He was using facial expressions to communicate multiple emotions and feelings very effectively. He was very obviously disappointed with the movies I had brought for him. He shook his head back and forth when I showed them to him and when I asked if he wanted to watch one he shook his head no He was answering my questions with yes, no, maybe, and I don’t care expressions and motions. He seemed so so himself, and he was very obviously understanding everything I was saying and trying to communicate! It’s a miracle! I am so grateful and happy, I could cry!

Jan 13, 2014

Journal of Ricardo

Jan 13, 2014: I was showing Ricardo pictures. He was being inconsistent. Once he said he knew my mom and once he said he didn’t. He said he didn’t remember the people who he was video chatting with a few hours before (it was his parents).

Hey, so yeah, yesterday I was showing him pictures and asking him if he knew the people and with my mom once he said he knew her and once he said he didn’t. Then with your mom he said he knew her in one of the pictures, but then I asked him if he knew the people he had been talking to on the computer (he skyped with your mom and dad yesterday), and he told me he didn’t know them

he was just being really inconsistent the whole time and it made me worried

but then today I was showing him the pictures of the museum in DC when we all went together, and he said he remembered it. And we were watching colbert and he said he remembered it.

and he was acting like he knew me today

mmm

Like I asked if I should go home, and he looked sad and shook his head no

  1. you can say he can see

yeah, he can see

I don’t know if he can see as well though or not

thats good

I’ve asked him a couple times and he hasn’t answered me

it seems like he may have trouble with his peripheral vision from my observations

but i’m not sure

yo can make the tests periodically

so you compare the changes for good or bad

if he would cooperate

he generally ignores my questions like that

but it seems like he doesn’t see me until I am right in front of him

Jan 14, 2014

Ricardo gets a little better each day. Today the nurse said he mouthed his name. That’s a good sign! They are starting to talk about transferring him to a room outside of the ICU in the near future. His progress is really exciting! It is still unsure how well he is going to be able to talk. He has now attempted speaking with a valve once, and it was very difficult for him. He did manage to make one very small sound. It’s going to be a lot of work, and it is still to be determined if he will be able to speak effectively with rehab (there’s a chance he has aphasia of some sort). He also was being very inconsistent answering questions yesterday. I’m not sure at the moment how much he remembers before the stroke. I have thought he was mentally fine, but yesterday I started wondering if he has lost all his memory before the stroke. I guess only time will tell. I still am hopeful that is not the case. Anyway, his progress is going great! It’s just hard to realize that I don’t know the ultimate outcome from this, if he will have memory and personality changes. I don’t know if he will be able to communicate the same way he used to. There are still a lot of unknowns and that is hard for me right now. He is getting better though! A miracle this week is that they think his brain is now circulating it’s own fluids. They were trying to wean him from the drain and he was doing really well. During this process the drain stopped working. They decided to remove the drain, and he has done fine without it. It has been nerve wracking, but this is the 4th day now without the drain and his mental status has not changed and the two CT scans they did looked good. It looks like he probably won’t need a shunt! That is great news!

Jan 15, 2014

Ricardo should be out of the ICU and into Intermediate care any time now! Happy day!

Jan 15, 2014

Jan 15, 2014: Ricardo was smiling and laughing when I was talking about Andrew. I was telling him about the silly things Andrew does and Ricardo was smiling. He acted much more normal today than yesterday when I talked about Andrew. His personality seemed very much himself. He seemed to recognize me.

Every day he he does a little better and moves a little better. I am positive he knows who I am today. He was acting just like himself. I started telling the nurse all the stuff he was doing with me and he got quiet. I asked him if he was mad that I was telling the nurse about it, and he shook his head yes. He’s still mad at me…

Very Ricardo

He was mad because he just wanted it to be between me and him

I asked him if he felt like I was trying to be just like the nurses and he nodded his head yes

he hasn’t talked to me since

Makes me happy today though

I will try to be better about keeping our private interaction between us, and not sharing the details with the nurses. But now I am sure he really does remember me

He knows exactly who I am and he remembers Andrew fine. He seems totally mentally with it today.

I wonder if he just has a few days where he is confused.

It is totally different than a few days ago

The doctors said that is normal with a brain injury for him to have good days and bad days

He is seriously doing so well today! It just makes me happy! And he has been moving his right leg a little. He has been working really hard to move his right side

Jan 16, 2014

They are starting to think about getting him into Rehab next week And it turns out the acute rehab is only 10-21 days long (depending)! Then he will be home! So exciting! (also so much to do now, lol). I guess initially the doctor thought he would be going to a subacute facility in a nursing home for several months when he told me about 6 months in a rehab facility. With how well RIcardo is doing he may be able to come straight home after acute rehab and then do outpatient rehab after that but live at home! Yeah! So much good news to share! He is doing so so well! I couldn’t be more grateful!

Also, he is having an angiogram, hopefully tomorrow, which will give us some answers as to what happened, if it could happen again, and if the AVM that started this whole mess is completely blocked off or still a risk factor.

Jan 16, 2014

Jan 16, 2014:

Me dijo que es muy común que quitan el traqueotomía durante la rehabilitación (van poniendo tubos más cortos hasta que lo quitan). No pueden quitarlo hasta que Ricardo no tiene un tos (tiene mucho menos que antes, pero todavía tiene un poco). La enfermera me corrigí (porque pensé que el doctor me dijo que ricardo no puede salir de terapia intensiva con el traqueotomia), Ricardo no puede salir del ICU si todavia está conectado a la respiradora, y ya tiene más que una semana sin usar la maquina para respirar. pero no hay nungún problema si tiene el traqueotomia en la rehabilitación. Que bueno.

I asked him if he would be excited to get back to his cuddle bed and he said yes (I think I remember him doing this (I am writing this after the fact. I started this journal based on what I remember and wrote down, but I am starting it on Jan 19th)).

I think it was on the 16th that I asked him if he remembered the movie Django unchained that he watched with his sis and he nodded his head no, then he nodded his head yes and looked at me like “duh”.

Jan 17, 2014

He is having another great day. Moving well, understanding well, interacting well. He seems to know me and didn’t want me to go home. I told him I was only coming for a short time tomorrow and he seemed very sad, so I told him I would change my plans and be here longer tomorrow. He seemed happy about that. I told him I need him. He was acting normal with me lots of moments.

Jan 18, 2014

He chatted with his parents. He understood their Spanish and moved his hand when they asked him to (in Spanish). He didn’t want to interact much with them.

He was watching a basketball game. He was mad when I interrupted the end of the game to talk to his parents.

Jan 19, 2014

I came in. Ricardo was watching a bowling match. I asked him what the highest bowling score he had ever bowled. He shrugged his shoulders. I asked him if it was higher than 100, he said yes. Higher than 150, he said yes. Higher than 200, he didn’t answer. I said his mom would love that he was watching a bowling competition. He shrugged his shoulders.

We watched Denver play football and win to go to the super bowl. He followed the game. He didn’t seem excited or not excited when Denver won.

I showed him pictures. He smiled at the videos of Andrew. I started asking him questions. He said he didn’t remember when we went to DC just before his surgery. He said he didn’t remember getting diagnosed with an AVM. He said he remembered our trip to Mexico. I asked him if he did again, and he said he did not remember it. I asked him if he remembered our wedding day. He said no.

I am now terrified L

Unknowns right now: Not sure if he can read. Not sure if he remembers anything. He seems to know at least certain facts. His personality seems the same.

Jan 20, 2014

I’m continuing to ask for prayers. As things unfold it is starting to appear Ricardo has no memory of any people or events prior to his stroke (he seems to remember certain facts with difficulty). I have hope that this may come back with time, but it’s scary for everyone, especially for him. Sorry to share the bad news

He does seem to remember me day to day and to remember things I have told him since waking up in the hospital. But no memory of life before the stroke. So hard…

Purely a guess (tomorrow he has an angiogram, so that may give better answers) from my whole two hours of reading I just did, but I am guessing it may be damage to the hypocampus from lack of oxygen during the hemorrage which has damaged his episodic memory. He seems (so far) to be able to create new episodic memories, but that can be controlled by something else.

This is what wikipedia says about episodic memory if this helps: “Episodic memory is the memory of autobiographical events (times, places, associated emotions, and other contextual who, what, when, where, why knowledge) that can be explicitly stated. It is the collection of past personal experiences that occurred at a particular time and place. For example, if you remember the party on your 6th birthday, this is an episodic memory. They allow you to figuratively travel back in time to remember the event that took place at that particular time and place.”

So that’s my guess at what was damaged. I’ll let you know when I know more though.

[a little later]… I was talking to the Neurosurgery team and they were saying that it is still too early to put Ricardo in a box and say what will and won’t improve. They said we will get a much better picture as more time goes on and they are able to track him over more time. That give me some hope

Jan 20, 2014

hi!! please tell me when u are ready to chat via skype

Monday 6:26pm

If i had to guess from my hour of reading I would guess it’s damage to his hippocampus that has damaged his episodic memory. I think his episodic memory from the past has been damaged but that he can create new episodic memories. That’s my guess.

i think it too

At least it appears thus far that he can create new memories. We can hope for that. And we can hope that the rest will come back. It could be temporary. Man I’m praying it is. This is rough!

i know

I showed him something written down and he told me he could read it

so that is good on that front

i wrote his name and he knew it was his name

I said, what does this say, and he pointed to himself

i wrote andrews name and he mimed “you, me, little person”

i wrote my name and he pointed to me

so that’s good

He doesn’t seem to remember any people or events from his life previously. I swear he did remember me early on, like the 18th and 19th of December.

Jan 21, 2014-

I’m feeling better about things. They said they won’t know for a long time what things Ricardo will be able to regain and the things they think he won’t regain.

Jan 21, 2014

Maybe I should post updates on Ricardo a little less often You all are getting a ride on my emotional roller coaster I feel more hope today again. He still isn’t remembering any people or events from his past but the neuro team wasn’t so concerned. They said I need to be more patient and realize that it is going to be many more months until they really will be able to say what things he won’t ever be able to do. It’s too soon for me to be putting limitations on him and there is a lot of confusion right now for him. Patience. I need to relax and be more patient. He has to relearn things as simple as brushing his hair I’m realizing, so there seems to be quite a lot of confusion. And they say that with time and work a lot of that confusion will resolve. So, it’s too soon to be putting limits on him. I have to remember that. Baby steps. Welcome to brain trauma 101 my friends

Jan 21, 2014

More good news…Ricardo had an angiogram today. The best possible outcome was what we got There is no remaining AVM so far as they can tell and arteries that were previously feeding the AVM are reduced in size compared to 1.5 months ago. They see no risk for a repeat hemorrhage so far as they can tell. They also saw no areas of the brain that were visibly damaged (the Doctor said that how Ricardo‘s recovery goes is actually more telling as far as what damage was done or not done, but there at least is no damage so severe that it was noticeable in the angiogram). All good news He will have a repeat angiogram in 1 year. But I now officially am hoping that this nightmare may have an actual end in sight as soon as Ricardo can recover from this as much as he is able. Huge sigh of relief…

Jan 23, 2014

Another good day for Ricardo. A few frustrating things, but lots and lots of good things. He was telling me he was remembering a little more! And tomorrow he goes to rehab! So excited!

Jan 25, 2014

Andrew and Ricardo saw each other for the first time today since Ricardo’s stroke. It felt so good to be together as a family again I’m so happy to have Ricardo in rehab! Thanks for your support everyone!

Feb 3, 2014

Ricardo is still getting better little by little. He has made huge progress in rehab though! He is walking with help now and today he climbed a few stairs. So, HUGE progress! Yesterday he mouthed the words “I love you back” to me And the day before that he mouthed the very first word that I actually understood well, which was the name of his friend Patrick. His memory is still poor but it has improved a lot! He is remembering people better now and a little bit more about his life. So, he is making huge progress! It feels like it has been 7 months but tomorrow will be 7 weeks since Ricardo‘s stroke. He has gone from barely wiggling his toes to now starting to climb stairs a little, from us wondering every moment of every day if he was going to make it through the day to now being stable, from us wondering if he would ever be able to communicate or even know what was going on around him to him smiling at his family and telling me he loves me. This has been the hardest thing I have ever been through, but I am so grateful for all the support from everyone, and I am SO very grateful Ricardo is getting better!

Feb 5, 2014

I haven’t been this giddy in a long time! They were able to take Ricardo‘s trach tube out and he can TALK! So much happiness! So good to hear his voice after almost 2 months! Oh life is going to be okay.

Feb 12, 2014

I haven’t updated in a while. Ricardo should be coming home sometime between the 20th-25th of February, then he will do out patient rehab for several months! So excited! He is getting better every day! It is so great to hear him speaking! He is now walking up and down stairs, getting in and out of cars, carrying about 15 lbs., doing well with his activities of daily living, and even playing some soccer He still needs someone with him helping him keep his balance, but it is amazing how much he has progressed! Current issues: He has some aphasia–he mostly makes sense when he talks but sometimes he cannot communicate what he is thinking and will say things that don’t make sense. His memory is improving, but he still has quite a bit of amnesia (both short term and long term memory issues, but he is remembering more than a few weeks ago). Cognitive issues and learning issues may exist, but they are not ready to assess that yet (due to the aphasia). He is improving every day!

Feb 18, 2014

I can officially say Ricardo is coming home today (Tuesday)!!! I am so very excited to have my family back together again and have Ricardo home I have waited for this day for the longest 2 months and 1 day of my life! Ricardo has been recovering so much faster than expected given what happened, and I just feel really excited that today we are taking another huge step towards a normal, happy life again.— with Ricardo Torres.

Feb 27, 2014

Ricardo is still improving and will continue doing out patient rehab for a number of months. Physically he needs almost no assistance now and everything else continues to improve daily. There are still a lot of unknowns but the good news is that he continues to make lots of progress. It is just so great to see him doing so well and to have him home

In addition, there are a handful of blog posts I wrote, which I can include, and there are these things I also remember:

February when he came home, I was walking around the house with him with a belt on his waist to help him. I was telling him when to eat, and making sure he ate cautiously. He still didn’t have much of an appetite since all he had been eating for a while was what he got in the feeding tube.

Beginning of April he couldn’t even take the more complex neuro psychology test.

April I believe we had his last nuerosurgeon appointment where he was cleared and told he only needed to come back if there was a problem.

April sometime he started remembering some details of our actual wedding. Before that he made up a story in march about our wedding.

By May he could sometimes remember major appointments without writing them down.

June, he started no longer needing reminders to eat a drink.

In July he traveled alone.

By September his expressive communication had come along to the point he was able to tell people he had suffered a stroke and tell them what he did for work.

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The Bargain

It’s hard to be patient through this process of Ricardo healing. It’s hard to watch him suffer, and be lonely, and realize that there’s not a lot I can do to really make life better for him.

He has been recovering miraculously, don’t get me wrong, but I still cannot imagine how hard this must be for him.

Can you imagine going from being able to do challenging accounting, while listening to a book on tape, playing an online game, all simultaneously–and still turn out flawless work in record time, to three months later taking a test and being told you are moderately to severely impaired in many cognitive functions?

Ricardo is one of the most efficient people I have ever met. He works faster and reads faster than anyone I’ve ever met. He reads something once, hears something once, and that information is his forever. You know the scenes in movies where the mad scientist scribbles out equations on a chalk board as fast as their had can write–I have literally caught Ricardo solving finance equations that he couldn’t quite haggle at work the day before, on the steamy shower wall as he hurriedly got ready.

Fast learner. Check.

Efficient. Check.

Brilliant, great at problem solving, excellent memory. Check, check, check.

He is the complete package for an employer. His exceptional brain is one of his greatest assets and probably the single thing Ricardo prides himself in the most.

Then he wakes up one day and all of these things are a struggle, and not just a little struggle. In some of these areas Ricardo tested below the 10% percentile three months ago, meaning that he is severely impaired.

Severely impaired isn’t a word that’s easy for anyone to swallow, and for Ricardo to be told that many of his cognitive functions are severely impaired has to be like an Olympian, who has trained their whole life, being told they are physically severely impaired and it is unknown how much they will recover.

It has been 6 months!

That’s not an eternity, but it feels like it sometimes. We went to the Neuropsychologist today and,,,I guess I get my hopes up too much sometimes. Maybe I was hoping she was going to say, “Wow, Ricardo, we better test you quick because it looks like you might be ready to go back to work.” She didn’t say anything remotely close to that. He has made big improvements in some areas, and stayed consistent in other areas, according to his speech notes. Overall, I think she thought I was jumping the gun in wanting to talk about when he might be ready to go back to work.

And she’s probably right.

It’s just hard to deal. One thing I really struggle with is that because Ricardo is so brilliant and educated he has a hard time motivating himself to do things like make lists of all the animals he can remember in one minute (which is currently about 6). He needs his therapy, and it is challenging, but he hates doing it, because it seems pointless, and maybe a little degrading for someone as smart as he is. So, right now, he probably averages maybe an hour a day where he is doing something that is really mentally challenging. This concerns me because he needs to be stretching his brain to maximize his recovery!

And you know what is both motivating and mentally challenging for Ricardo?

His job.

The only problem is, he cannot return to work until a doctor can certify that he should be able to do his job with “reasonable accommodations.”

It will probably be months (not really sure how many)…possibly even longer than a year before that will realistically happen. And there is this fear in the back of my mind that tells me that it might never happen. Hopefully that’s not the case, hopefully it’s just a matter of time and hard work and he will gradually get back to his job, but the unknown is killing me here!

It just feels like Ricardo is wasting his time here at home. He wants to be at work. He hates having to do therapy. He hates housework and doesn’t have any desire to be a stay at home dad. He wants to work. And he wants to work at his dream job, where he has great friends, and was excelling and growing so tremendously and rapidly before his massively life changing brain hemorrhage.

He wants this time to just pass and go away. And so, during this time, which is the time he needs to be working the very hardest he has worked in his entire life, he is struggling to even get 10 minutes of speech therapy homework done each day.

Ricardo and I had a good talk about this and we made a deal. He promised to do 2 hours of strenuous mental exercise each day, doing his speech therapy homework, challenging computer games, and a program we are going to try called Lumocity. In return, I promised him I would get in shape, train for, and run a Ragnar Relay and/or a half marathon!

Hopefully then, he won’t be so alone. Hopefully then, he can see that we can still accomplish hard things, together. And hopefully, through this experience, we can both come to believe in each other and in ourselves.

Wish us luck!

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