wildflowers in gravel
Tuesday, August 23, 2011
And it doesn't always get easier....
By the time I walked across the parking lot, taking a couple of deep breaths to calm myself, I was feeling better, and then I walked in the doors. The smell was what got to me first. I'm not saying that this hospital has a bad smell. It just has a familiar smell that will forever be linked in my brain with fear, anxiety, waiting and watching Gary suffer. Those that know me well will not be the least bit surprised to hear that I teared up immediately.
After my Dr. appt, I walked to the lab for some blood work and my feet knew the direction to go without my even thinking about it, even the little shortcut that takes you closer to the patient rooms, but to the other side of the hospital faster. I will NEVER go that way again! It made me remember the night that Gary was so drugged and hadn't eaten or woken up for nearly two days. Alyssa and I, trying always to keep each other encouraged and brave, actually had a race to see which way got you from point A to point B most quickly. Inside, we were so sick with worry because no one could really tell us for sure what was wrong with him; yet we hid it from one another as much as possible.
Two nights ago, we were watching a random TV show in which one of the characters was in a car accident and in a coma. Alyssa asked me if seeing the monitors upset me, because she got the chills and was nauseous when she saw them. I definitely had the same experience when watching something earlier in the week. Seeing those monitors, learning what the numbers mean so you can watch them and make sure that they are fine, that's something I wish I would never have to experience again. Then, in this random show, one character grasps the patient's hand and there is the finger monitor that all patients wear and she asks him to "squeeze if you can hear me". It is such an overused plot and overused line and even as I write it, I'm transported back to sitting in my grandma's living room and watching soap operas, but maybe because of that, it is what we say. Even the nurses said that. "Mr. Hook, squeeze my hand if you can hear me. Can you hear me, Mr. Hook?"
This afternoon we hired a company to come and do some yardwork for us. I was admiring the results and commenting how great it looked to have the enormous, practically dead, rosebush chopped down. Gary said, "Oh, they didn't do that. I did it last week." I can honestly say that I freaked out, both with him and on the inside too. He told me that he did it while I was gone, so I wouldn't make him stop. That's so much worse because if something had happened to him, no one would have been here to help him. It means I have to ease up and let him do whatever he wants to do, so he won't sneak around. It's kind of like when you have to let your toddler, then child, then teen have more privileges and freedom because you want them to begin to do more while you're there to provide a safety net; not when they are all alone and you can't help them.
Courage is a wonderful thing. Having peace and resting in God's promises is even better. But I have to admit that sometimes things are even harder now than they were during the middle of the crisis, because they're unexpected and they bring out emotions that no longer need to be kept in check to deal with the crisis at hand. Seeing all the progress that Gary has made is amazing and wonderful, but this side of it isn't always easier.
Sunday, August 14, 2011
12 Weeks of Summer (and it's almost over)
What a summer it has been! It’s incredible to take a look back at last spring and even comprehend how much our lives have changed in such a short time.
There is much to share about Gary and his progress. He has gone from somewhere around 10 medications while in the hospital to a couple of weeks left on his ulcer medication and that's it. His blood pressure is usually stable, vision is hardly ever doubled anymore and his dizziness is much improved. Exercise really lowers his blood pressure, but he keeps at it anyway. He is determined to get stronger. His speech is almost back to normal and when he smiles now, there is no droop on the left. Dr. Kim saw him last week and he was grinning like a Cheshire cat after asking Gary about his improvements. He said he never knew for sure that some nerve hadn't been damaged.
This week saw the end of “chairs”. There is no more wheelchair in the early morning and the shower chair will be taken apart and re-boxed. The only special chair in Gary’s near future is a beach chair, as we have decided that we desperately need a short trip to listen to ocean waves and take long walks across the sand, assisted by a wooden cane, because yes, the walker is actually gone also.
Just a few short weeks ago, I shared with some friends that it was heartbreaking to see Gary unable to walk and I cried as I said that no one knew how long it would be before he could play on the worship team again. It was only a few days later that he came walking into the kitchen unaided because he forgot his walker and he regularly forgets his cane now also. And this Sunday, Gary played his first worship service. Alyssa and I were in the nursery when we heard the claps and cheers. At first we had been upset that we were going to miss him; then we realized that we would be crying so much, it was better if we just stayed in with the kiddos. As it turned out, we took turns peeking into the auditorium to see him sitting up there playing the keyboard. I’ll admit it…we took pictures. I'm pretty sure everyone totally understood.
In all honesty it seems like May 27th was a million years ago. If I even start to list all the changes in our lives, I get overwhelmed. Gary is not the only one who has changed…the girls and I see life in a totally different way. There are some trivial things that mean more than anyone can imagine, like watching Gary setting up the sprinkler or walking through the grocery store. There are also many trivial things that make us all impatient; I’ll do you all the favor of not listing those here. Amy tells me that she has so much trouble now dealing with people who are constantly in a bad mood for no good reason (which is kind of funny if you knew her as a teenager:)). Alyssa struggles a lot with those who take good things for granted. She knows how incredibly quickly all of that can be taken away from you.
There is a country song called, “Live Like You Were Dying” and it expresses my feelings so well, “I loved deeper and I spoke sweeter and I gave forgiveness I’d been denying…I was the friend a friend should be.” I think all of us realize that not only is our time on this earth finite, we should truly fill our days with the things that matter: God, family, friends, talking with one another, reading good books, eating good food, taking care of ourselves, going places, pursuing our passions and yes, even watching our favorite TV shows:). Alyssa and I have pretty much given up facebook. I check in a couple of times a day for a few minutes and she only gets on about once a week. I’m only on the computer to write or to prepare for another year of school. I’ve also found that housework is just as easily done once a month as once a week and the house still looks almost as clean. We love spending time with our friends, laughing together, trying new restaurants, going to movies…just give us a call.
Alyssa and I have been on a search for a “Big Adventure” and she finally settled on one. She is going to conquer her fear of heights by doing a zipline as soon as it cools off a bit. If you hear an echoing, unexplained scream on an early fall morning, just assume it’s her. She is also going to take some chances with some solo dance performances and competitions, just for the experience. “Nothing ventured, nothing gained”. I have some big plans for the school year, new programs to try and what I’m calling our “Downtown Day”. I’ve decided you can study at Central Market, by the lake or at the Arboretum just as well as the kitchen. And my goal is to see one movie a week, if there’s something even remotely interesting. Amy is interviewing for a childcare job and she is on a waitlist for her first ACC math class. Gary has always loved trying new things, so I won’t be surprised by anything he wants to do. We already have some new kitchen utensils, including the butane torch for cooking meringues (and it also comes in handy for browning sausages apparently, as he was doing that for lunch the other day). He did have some disappointments this last week, when his body, which still requires lots of healing sleep, didn’t allow him to experience some adventures with “the merry men”, but they’re planning a Texas BBQ Extravaganza soon that will help make up for it.
Honestly, the last few weeks have been a little shaky for Alyssa and me, as we are still dealing with anxiety over Gary and all that he is doing and trying to do (like exercise for an hour or two a day…I mean, who does that when they’re healthy, much less 3 months out from brain surgery). Just how much anxiety we were feeling was well illustrated this last weekend when Gary walked in from the garage and announced, “I’m bleeding.” I was out of the chair in a split second; both Alyssa and I felt the adrenaline shoot through our bodies. I literally felt faint. You will all be relieved to hear that he just scratched the top of his hand:/ and he’s now been asked to be more careful about his sudden announcements. We’re letting him do as much as he wants to do and take over the old jobs that he used to do, without being frightened (sort of) and this week has been good. I had a 2 ½ hour coffee time with a dear friend and didn’t tear up once and the last three days the house has once again been filled with Alyssa’s laughter. I think we’re finally realizing that this amazing man is on his way back, and like the summer, this is almost over!
Monday, July 18, 2011
8 Weeks Ago Tonight
It was exactly 8 weeks ago that we sat in the ER at North Austin Medical Center waiting for the neurologist on call to meet us there. I’ll never forget the feeling of having Gary call me from the MRI center to tell me we had to meet the Dr. there immediately. We’ve all become so accustomed to waiting a week or two to hear the results of any medical test we take. Immediate consultations with Drs. could mean only one thing.
When I checked in at the ER window to see if Gary had arrived I was told that he hadn’t yet, but “everything” was ready for him; I turned from the window and heard one nurse say to the other, “Is that his wife?” I felt the blood drain from my head and I had to sit down and tell myself to breathe slowly. I knew that he had been fine when he left the house and that he would walk in the hospital just as normal as when I’d last seen him.
One month in the hospital and one month recuperating at home later, Gary is not as “normal” as he was when he greeted and hugged me as he entered the ER that night, but every day there are tiny improvements and we’ve headed into what feels like an almost normal life.
Gary is back to eating and drinking without any trouble. He has had to limit his coffee somewhat, much to his dismay, as it affects his already erratic blood pressure. Mostly, he has to drink less coffee so he can consume more water. Staying hydrated is extremely important for him and his physical therapist helps me regularly encourage water consumption. Most importantly on this subject is that Gary had the stomach tube removed on Tuesday!! I thought I was going to have to make him one of those chains that kids make at Christmas so he could tear off one link each day.
Praise God, Gary’s blood pressure is resolving. After a couple of high readings of 170/95, the Dr. said to completely get off the blood pressure medicine designed to raise his numbers and see what happens. Now his readings vary from 150/85 to the occasional 70/40, but the low readings are infrequent. They usually occur in the morning, after pt and/or when he has been someplace and has to get in the hot car. Upon standing, he will get a little dizzy and have to sit down for a few minutes before continuing on his way. Coolness and hydration are the key (actually for all of us in Texas this summer).
So, this brings us to walking. Although Gary has become quite adept at wheeling around in his wheelchair, he has been instructed to use his walker most of the time. About the only time he uses the wheelchair when we go out is if we are going to the movie. He has gotten quite good at taking the stairs with the walker, but we don’t want to push it in a darkened movie theater. The only drawback with the walker is if he is experiencing dizziness from low blood pressure (or trying to change directions too fast). He has no problem recognizing dizziness coming on now though, so he can sit back down, take a few deep breaths and be ready to move again. Gary is practicing with a cane at pt and once the double vision is completely gone, he will be able to move on to a cane at home.
The double vision is much better. Morning reading at the computer is still not completely focused, but he no longer uses his eye patch. As with everything he does, he is pushing himself to make things work better now! The other day at the grocery store, he put 4 bananas in my hand, only my hand wasn't quite there yet and they smashed to the ground. I asked him if he had seen two hands and just missed the real one. No, he just let go of them too early:), so he and Alyssa will be eating an extra banana over the next couple of days, or Gary said that there is always banana bread.
Speaking of food again, he has made a cheesecake, a lemon torte and many batches of peanut butter and lemon ice cream. He insists on making his own breakfast and lunch. We're still finishing off all the great frozen meals we were given, so I've managed to keep him out of the kitchen at dinnertime. He just bought some fresh Brussels sprouts though and he plans to roast those soon, so it's obvious he's planning to start helping with evening meals again.
A typical day for Gary is many hours at the computer, walking on the treadmill or rowing, lifting some weights and doing leg exercises, physical therapy 3x a week (down to 2x next week) and and finally, a couple of TV shows before heading off to bed around 11:00. He is working part-time again already and I have to fuss at him as much as possible to let us do a few things for him. The other night he decided that he would go outside and start watering the yard. Well, that is definitely not my favorite job, but I went into a whole story of "what if you fall down and hit your head on the sidewalk and get a concussion and blah, blah, blah". He laughed at me, but is letting me water for a while longer:). (Nope, in a quick update, I took Alyssa to dance tonight and when I got home he had started the water in the back yard.)
If you want to hear how his speech is doing, give him a call or come by and visit. Every once in a while, his d, t and r will give him some trouble and there are certain combinations of letters that cause him to sound slurred. In the evenings, he says that he feels like his speech isn't as clear, but we have no problem knowing what he's said. We do miss all our company...that was the most fun part of the hospital! We did have a little get-together for a dear friend that was visiting the states from S. America. It was small, but we're already planning a much bigger "thank-you" party for all of you who truly demonstrated the principle of being Jesus' hands and feet for us this past two months. Gary has to get a little better first though, because he's a much better host than I am a hostess!
I think I have a small understanding of what post-traumatic stress disorder is like now. Alyssa and I are both having some anxiety, worrying too much about little things...I'm tearing up easily and she is more tired than usual and has little appetite. We've talked about it some and feel like we ran on adrenaline for the entire month we were at the hospital; then she went to Ballet Magnificat and I came home with Gary. She was, of course, unbelievably busy and I was busier than usual and both of us were still keyed up, waiting to see what changes Gary would make. Even now, with so many of his abilities back to normal, we find ourselves waiting and watching him...is he doing too much, is he getting overheated, has he had enough water, was that a stumble, is he dizzy...the list could go on and on.
We both know that God has incredibly blessed all of us with Gary's quick and major recovery and we know that worry isn't scriptural, but when you watch someone that you love go through SO MUCH, it's impossible not to feel anything. We feel indescribable joy, we feel unbelievable gratitude, we feel a very raw and emotional love for this husband and daddy, but we also feel a "sitting on the edge of your seat", heart-pounding wonder at what exactly tomorrow holds. But we are "trust(ing) in the Lord with all our hearts and (definitely) not leaning on our own understanding". If we had ever NOT done that in the past two months, I think we, Gary included, would have missed out on experiencing what has truly been miraculous.
Monday, July 4, 2011
Independence Day
Independence Day at our house has usually meant something extra fun for dinner, special celebrations or gathering at a friend's house. Whenever possible, sparklers have been involved. Although we've never paid to go to a firework show, we have often found a yard in which to watch a local show. Amy had some daring friends who would put off fireworks in their yards...the really nice (and illegal) kind, like Roman Candles and Bottle Rockets. During my decorating the yard phase, while the girls were little, we would line the edge of the yard with small American flags. While my parents still lived in Albuquerque we would occasionally take a trip there to celebrate my dad's birthday (7/3) and the 4th of July. Neighbors had been gathering at our house since my childhood to eat delicious food, homemade ice cream and set off ground (legal) fireworks. Amy and Alyssa enjoyed those special 4th's immensely.
So, on to Independence Day of 2011...
This year there are no children or teens at our house to celebrate the holiday. Amy's independence began many years ago, but especially at 19, when she moved into her own apartment. Her 4th's are celebrated with friends by the pool or floating on an inner tube down the Comal River. And for the first time ever, Alyssa is not with us on the 4th of July. She is attending a ballet intensive at Ballet Magnificat! in Jackson, MS. Yesterday, they were decorating their dorms, but today they have a full dance schedule. Since this intensive occurs at the same time every year, we probably won't have her home on the 4th again. The girls' independence from us has happened gradually. I have been a mommy for 21 years, which mean 21 years of holiday celebrations.
Alyssa's independence this year is probably the hardest for me to accept. As my mama's girl, I never adequately prepared myself for the day when she would finally leave the nest. Now, I find myself celebrating her independence this summer while mourning it at the same time. I would wonder sometimes if she would turn out to be one of those daughters who stays home and takes care of her aging parents. That is laughable now. Although she has been incredibly attentive and devoted to her dad during his hospitalization, she has blossomed into a self-confident, God-confident young woman. Listening to her chatting with other patients in ICU, encouraging her dad (and me) when things were tough, acting as a hostess to hospital visitors and then seeing her go into the ICU room where one of her friend's father was desperately ill, showed me that she is confidently ready to enter adulthood. Her first foray into the world of ballet intensives illustrates even more independence, as she deals with a slightly difficult roommate, enjoys a variety of ballet teachers, accepts compliments and corrections with equal attention, eats not so hot cafeteria food while assuring that she gets enough protein and organizes her laundry and spending money for the two week stay. Still I glory at her last tweet, "5 days until I see my mommy". It's wonderful to know that I've still got a little time before she's completely independent.
Amy's independence has always been a mystery to me. On the one hand, she let us know from the very start that she wanted her way. Her first kicking, screaming temper tantrum was at 9 months, when I moved a Christmas bauble out of reach. From that moment on she struggled to gain and keep her independence. And yet, while her dad was in the hospital, she mourned the loss of the very help and support that had so often aggravated her before his illness. There were so many times during the month that she texted me about something that had happened and said that she needed her daddy. There's a constant conflict between her never-ending fight for independence and her actual dependency on us. I pray that Amy works this out with us and with herself as she ages. I hope she learns to accept that her need to be around people naturally leads her to be somewhat dependent on others and it doesn't have to be a negative attribute.
Finally, to address who this blog is all about...my sweet husband. Never have I met a more independent man! I don't even know exactly how I fell for him and/or managed to keep him, considering my lack of independence. One night after we were engaged, he was supposed to pick me up and never showed. I went looking for him and found him playing piano in one of the downstairs practice rooms at the college we attended. He had been there for hours and never even realized how late it was. During the early years of our marriage, that blessed young husband would set up his office in our living room because I wanted him in the same room with me, regardless of the fact that we had an extra room for his desk and computer. Until we had children and I finally had someone else to spend all my time with, he graciously spent the majority of his time with me.
And then came the massive brain tumor...
Let's face it, there is nothing independent about being in the hospital. A patient is completely dependent on the care of their family, nurses and friends (and yes, in that order). No matter how independent one tries to be: ice chips and water, going to the restroom, incessant beeping from IV's, bathing, etc. all have to be performed by someone else. I watched Gary struggle to be independent in ICU. We had the forbidden swallowed water incident that led to pneumonia as one example of his independent nature. Doubling up on the number of activities he did in physical therapy showed not only tenacity, but independence. Gary constantly pushed the limits of what he was able to do, which had both good and bad outcomes. Alyssa wrote these words: "Mostly it was taught me that I can’t always be independent, sometimes I have to rely on people. When a grown man can barely do anything, he has to let people help him and I have seen that although he doesn’t like it, he knows he needs the assistance." I found myself marveling at Gary throughout his hospital stay, especially during the two weeks he was in rehab. He worked diligently at all of his therapies, but also sat quietly in his wheelchair or bed in between therapy time. I would ask him if he every felt angry or frustrated and he calmly answered that there was no point in that. He had learned to be patient, to persevere and be dependent on the help of others.
Since we have been home, the one and only mild argument that we have had happened the very first afternoon. Gary implored me to "stop hovering", despite the fact that he had been released from the hospital "under supervision". I didn't honestly think that I was hovering because there was suddenly a wheelchair, a walker, 2 medications, blood pressure to be taken several times a day, a shower and the responsibility of seeing to everything thrown into my day. I just thought that I was "accomplishing" those tasks. But Gary needed to work out what he was capable of doing on his own, and 10 days later we are in perfect sync with daily care. Gary is doing many things on his own: making his coffee in the morning, taking his medicine and blood pressure, doing his exercises, working on the computer and at the piano, getting his breakfast and lunch. He has had to accept dependence in other ways: me driving him places and then helping him get around in the wheelchair and walker, cleaning up after his meals, doing the garbage and watering the lawn, help him with meals and showering and bandaging the stomach tube.
Independence and dependence, for Gary and me, represents his fight to regain everything that he lost during the surgery. We have no idea at this point what the final outcome of that fight will be, but there is no doubt that we will work at it with dedication to achieve a goal of near perfection. If my independent husband has to surrender some of his independence in the end, I have confidence that he will do so with the grace and good humor that he has shown throughout this entire ordeal. And I will learn some independence that I have lacked in the past, thankful that I can depend on God to provide all the strength that I need.
Friday, July 1, 2011
Too Busy...
I'm exhausted...haha!
Thursday, June 30, 2011
What a Week it's Been
How many times can you go to Walgreen's in one week? We're up to 5 times, I believe and we still had to go to a medical supply store and Pflugerville Pharmacy. We've also been to HEB 3X and Walmart. It takes a lot of supplies to "move" back into a house after a month in the hospital.
We have been blessed by 7 dinners, plus 2 to be put in the freezer for later. Our lawn was mown and edged. Amy came and washed our cars. One lovely surprise was when our friends who own Welcome Home Cleaning Services sent out a crew to do a thorough housecleaning for us. Thank-you so much, Frank and Maria.
Gary had his first outpatient PT on Wed. As usual, he "exceeded expectation". After the evaluation the therapist said that, based on his review of Gary's medical record, he didn't expect Gary to be anywhere near this level already. Of course the therapist mentioned the fact that Gary was "in such great shape before the surgery" several times, as being the main reason that he is progressing so quickly. I think that we all need to be learning something from this, but I have yet to start working out with the Bowflex. Gary, on the other hand, has rowed 3X this week for 15 min. He's doing 3 sets of 15 curls and dumbbell presses with 8 lb. weights and 3 sets of 15 on his deltoids with 5 lb. weights. He also does all of his other regular PT exercises, speech therapy and is playing the piano regularly to improve his dexterity. He mentioned slow walking on the treadmill and I threw a fit.
There haven't been any episodes of fainting, which was my one huge fear. Gary does have some dizzy spells in the morning if he stands up, so he stays in his wheelchair. Don't think for a minute that keeps him from getting things accomplished though. By the 2nd day home, he had entered all the receipts from the past month in the computer & checked the mail and bills. He told me after the 3rd morning of getting up and making his coffee that he could do that by himself (thank-you very much), plus he gets his own breakfast and lunch just like he always has. He decided that he wanted to make a chocolate topping for his ice cream, as well as a lemon curd. And he washed the dishes one night while I was showering, but he got in a lot of trouble for that one:).
During the afternoons, Gary uses his walker around the house and for the last two days on any outing we take: Dr. appt., PT, Walgreens, World Market and HEB. Did you know that you can actually grab a 40 lb. bag of potassium and get it into the bottom of the cart, supposedly holding onto your walker. while your wife panics. AND you can lift it out of the bottom of the cart and put it into the car, holding onto nothing, while your wife's heart rate speeds up considerably? He is doing a great job walking with his feet straight ahead. That is so different from even a week ago.
We've had several visitors this week and I'm so thankful for that. Ariana has stayed with us a few nights and she had a friend sleep over last night. We love having her here, but we're letting her work with her dad now to make future plans. (Praise God Richard is showing improvement.) My sweet parents are heading back down here on Tuesday and they will stay with Gary while I go and pick Alyssa up from Ballet Magnificat in MS. It was pretty traumatic for me to be at home without her at first, after all that has happened, but it's been wonderful to hear what a great time she's having. She loves dancing 32 hours a week, going to chapel, studying and hanging out with her small group. I am looking so forward to hearing all about her experiences.
Thanks for all your prayers and help. We'll continue to let you know how things are going. I think it's going to be exciting to see how God uses all of this in our lives. I know that we have all learned a lot of lessons. I'll be sharing more about that on my blog over the next few weeks.
Thursday, June 23, 2011
And the real work begins!
After 4 weeks in the hospital, Gary is coming home!
He comes home:
- eating a normal diet
- horribly stiff neck from before surgery gone
- tinnitus gone
- hearing better
- speech almost back to normal, but he'll have lots of speech exercises to do (working on d's and r's especially)
- with a stomach tube he doesn't need to use that can't be removed for 4 more weeks
- 12 lbs lighter
- 30+ stitches in his head
- still with hypotension - mornings can be 90/50 (Crucial prayer request - low blood pressure causes him to get dizzy, get a mild headache and almost pass out. He has learned to exercise in bed go help raise bp and get up very slowly to make sure that he doesn't fall.)
- using a wheelchair (during low bp time), a walker and held by a gait belt around his waist
- weaker on his left side
- with double vision that is corrected by wearing an eye patch, but will need the help of a neuro-ophthalmologist
- attending 3 sessions of physical therapy every week
- with many hours of exercises a week required
- his sense of humor completely intact - he's celebrating the handicapped sticker we get to put in the car:)
- his sense of compassion intact - on Thu. a sweet friend of Alyssa's will be coming to live with us for a period of time...2 weeks, 2 months or even longer...last Sept., her mother died after a long battle with breast cancer and now her father is in critical condition, fighting a bacteria that is destroying his vital organs. It could be many weeks or months before he is able to care for his 5 children again. Please pray for this dear family as the kids are put in different homes and the father fights for his life.
Love,
Gary, Kay, Amy and Alyssa