So long 2011...

In about ten minutes, the Mountain Time Zone will be entering the last hour of 2011. This time of year is all about looking back at what the last year has held for us and looking forward to what the next one will bring. For most of us, it is a hopeful time. It's a time to promise ourselves that the next year will be a good one because we will make it so. This year we will curb our appetites and exercise control over our wallets and our watches.

I have really mixed feelings about the approaching new year. On the one hand, I have to admit, I am not sad to see the end of 2011. This year has quite possibly been the longest and most stressful I have experienced. On the other hand, I know that changing my calendar is not going to have a whole lot of impact on that stress. When I look forward into the future, most of what I see is a lot of unknowns staring back at me. Then again, that's really true for all of us, isn't it? Can anyone look back at the end of any year and say, "Well, I saw all of that coming!" Maybe some people can. So far, that's not really how things turn out for me. Maybe I actually know more than I think I do. Maybe that's why it's a little bit intimidating.

I know the next twelve months are going to be pretty similar to the last eight or nine or whatever it has been since we brought Isaac home and began the adjustments that we are still working on. I'm pretty certain that those adjustments will be ongoing for several years. Although, there is no way for me to know exactly what all those adjustments will look like.

I've never really been one for new year's resolutions. I've always felt that I do better at achieving goals if I resolve to do them "now," whenever that might be, rather than waiting for January 1st to roll around. At the same time, I think it is good to take time to reflect on what we want to improve in our lives. Right now, I feel like I have little control over the majority of my life. The usual resolutions just seem so much more challenging than I would have thought a year ago. Forget losing ten pounds, I'll be lucky not to gain ten more.

In spite of the uncertainty and challenges that I suspect 2012 will bring, I also hope it will bring something more positive. With everything that has happened in the last year, I feel that I have learned some things. I've learned to appreciate the little things in life. There are so many seemingly insignificant things that would affect us so dramatically if they were gone. Watching Isaac struggle to use his hands has certainly given me a greater appreciation for my ability to do things like type this blog post. I've learned that attitude is everything. Although I think that there are things Isaac wishes he could do, it seems that he chooses to be happy regardless of his physical abilities. Sometimes when I explain his physical condition to people, their reaction is one of sympathy. They sometimes call him "poor." "Poor Isaac." "Poor little guy!" But it always strikes me as a little odd, just because I don't think he knows there is anything to feel sorry for. He has no idea he is "poor." And I don't think that anyone who has gotten a good taste of his personality can think of him that way. Whatever he lacks in physical ability, he more than makes up for in charm.

I want to live that way. I want to enjoy all the good that life has to offer. I want to share that love of life with those around me. I want to work to improve while still allowing myself to be imperfect. These are things I think I can resolve to do. I could say I'm going to lose weight too. It would be a good thing for me to do, but I know my resolve in that area will probably only last until the next time I get hungry! Let's hope my resolve to appreciate all that life has to offer lasts a little longer.

It's been 2012 for a little over half an hour now, and I am ready for my first night's sleep this year! :) I hope that you all have a wonderful 2012!

Something Completely Different

I realize that a lot of my posts recently have been a bit... somber. There are certainly a lot of ups and downs around here. Sometimes my blog ends up being a bit of a dumping ground for the down days. But today I wanted to post a few of the more "up" things that have been going on the last couple months.

One thing I've been working on is a little bit of home decor. It just always makes it nicer to be at home when things are pretty!

The shelf came from a yard sale. My mom came and helped me get it put up. (Thanks, Mom!) The berry garland came from another yard sale on a different weekend. The various dishes I already had. The pine cones, fake fruit, and clusters of berries came from Walmart. This is on the wall above our table which is the same blonde wood finish as the shelf.




Eventually, I will get a valance for this window, but for now, the berry garland is looking festive! :)











I've been experimenting with different picture arrangements since we moved in here. After seeing some fun picture hanging templates on Pinterest, I felt inspired to hang mine a little differently. It took me a while to get them the way that I wanted. I think it still needs a little tweeking, but overall, it's much better than before.









Last week, I also got to meet a friend in Las Vegas! That was fun! Leonora and I drove down together. We had lunch, went shopping, and had dinner before heading back home to Utah. It ended up being a late night, but it was so fun to see Kiley and her little boy!

What I miss most

This is my third or fourth attempt at writing this. Hopefully, third or fourth time's the charm!

I have been feeling such an odd mixture of emotions regarding Isaac and our family's situation. On the one hand, I am so heartbroken over the whole thing. I remember what he was like a year ago, and I know he will never be the same little boy who followed me around and wanted to do everything I did.



He "vacuumed" with his toy vacuum, swept with his toy broom, stood on a stool to help me load the washing machine and loved to water the plants (and sometimes the bare ground) with me.










I miss this boy. Although his personality is the same, the circumstances are so different. He wants to help still, but these are things that are very difficult for him to do right now.


Last October, our family went to visit some friends and family in Northern Utah. One night, we had gotten together with Aaron's brother and his cousin along with their wives and children. We were going to play some cards, but needed to set up a table. Aaron's cousin, Jeff got a table out and started putting it up. Isaac, wanting to get involved and help out, rushed up to him from behind. Jeff didn't see him and unfortunately, Isaac and the table collided. Jeff was very apologetic and felt bad about it, but that's just part of who Isaac was and is. Even as a 21 month old toddler, he wanted to, and thought he could, help with everything! Shortly after that, I took this picture of Isaac:


Do you see his little "shiner?" It is proof of his love of being involved and helping out. I miss it. Every. Single. Day. I cry about it frequently. It has been hard not to ask why, why him, why us, but I do think there is a reason. I wish we didn't have all of this going on. Really, I am not to the point that I can feel grateful for the things we are going through. I do feel that we have had many blessings from family, friends, and church, and we are very grateful for that. I don't think we could get through this without all of your support. But I have to admit, it is hard to feel grateful when I feel so very... sad... about what is missing from all of our lives right now.

But there is one thing about this picture that I love and cannot miss: his smile! Isaac has always been the happiest little kid I've known, and his smile is so contagious! He is such a special kid. Through everything, his smile has been constant. He has ups and downs, of course, and he puts on a pout for his therapists, but it never stays for long. He is happy, and for that I am truly grateful. He has had so much taken from him, but he still has his smile and good attitude. Nothing else could be more important for him to keep.

Losses part 2: When Things Might Have Been

Can you miss something you've never had? A casual friend of mine asked this question on her facebook page a few months back. She was referring to missing a deadline to register for the Boston Marathon, which she wanted to run, but my own mind went directly to my own missed experiences, and I answered "yes." To me, this is what grief is.

Those who have been reading my blog for the last few years know that I had a stillborn daughter in October of 2007. It has been one of the greatest challenges in my life and easily my greatest loss. For the next year or so, I experienced every holiday, birthday, and other events and important dates torn between what was and what might have been. While I tried to put on a smile for my children, my mind always turned to wondering what would have been different if my baby, Renee, had survived. I couldn't help thinking of all the "firsts" I would have experienced with her. I wondered when she would have rolled over, crawled, tasted her first solid foods, and taken her first steps.

During that time, we found out that we were expecting Isaac. He was born into our family just a little over a year after we said hello and goodbye to Renee. I had a lot of mixed emotions about trying to prepare for a new baby while I was still missing our Angel Baby. I had a hard time getting excited about a baby. Oh, but when he was born, he had my heart! I was so happy to have a perfect little boy added to our family! I really couldn't have asked for a smoother birth or a sweeter baby. We lived in blissful ignorance of what the future held for him and us. We had no idea that he had what was essentially a ticking time-bomb on his spinal cord.

Since his injury, I have found myself grieving once more. It is a strange thing when what you feel you have lost is actually still with you. Isaac did not suffer any brain damage, so from the neck up, he is exactly the same boy he was. He is sweet and affectionate, smart and silly, and of course has his own opinions, as every two year old does! But I feel as though a part of pre-injury-Isaac has died. This is the boy who climbed up chairs to find chocolate when we were visiting Grandma and Grandpa Lund this past Christmas. It's the Isaac who ran up and said, "Hi!" while I was at the stove cooking and then ran back to the bedroom to say, "Hi!" to Aaron and then did it again, and again, and again! The boy who wanted to help move a table and ended up with a black eye won't be back. The Isaac who watered flowers with me is gone. What is left is the Isaac who wishes he could water flowers and gets frustrated when he cannot grip the small watering can that he got as a Christmas gift because I knew he would love to have his own. We had great plans for gardening together this spring and summer. But that time is gone. That Isaac is gone.

I know he will go on to learn and excel in new things. He still has many positive traits and abilities that will help him get through life as a quadriplegic. He inspires me with his ability to adapt to his new body. And I am grateful to have him. I cannot express just how grateful I am. For now, the days are a mixture of this gratitude for his life and grief for what is gone. I know one day the lines that separate those emotions will blur and become unrecognizable. One day, I will look at my boy and see only the Isaac-who-is. The Isaac-who-was will always hold a special place in my heart, but he will only live there as a cherished memory.

I believe that all who grieve are experiencing this kind of loss, regardless of how "big" the loss is. We wish we would have been kinder. We wish we had taken the time to get to know someone. We think of how things would have been different, had we known what we know now. Things change and people change and sometimes feelings change. What we wanted before is no longer an option and that grieves us. We mourn for lost futures or changed or limited futures. This is what grief is for me. That feeling of loosing what I have never had, and aching for what might have been.

A few questions answered

We get a lot of questions about Isaac and how he is doing, and some of them seem to come up fairly often. Probably the most common question is just, "How is Isaac doing?" which can sometimes be hard to answer. I can say, "Great!" because, he has improved so much and we are excited about that, but there are a lot of things he still can't do, and I don't want to lead people to believe that he is up and doing all the things he used to. I usually try to figure out what the last thing is that they heard and go from there. At the moment, I feel like he is doing really well! His neck and arm muscles are visibly stronger and his abdominal muscles are improving also. He is learning how to use what he has to compensate for what he doesn't.

Another frequent question is, "Will he walk again?" This is a difficult thing to answer. We don't really know what the future holds for him, but because the spinal cord does not regrow, and he has had a significant injury that is high up on his spine, the chances of him ever walking again on his own are extremely slim. One of the rehabilitation doctors we saw said he had never seen someone walk after an injury that high up. In addition to that, Isaac still has not been able to make his legs move. He has spasms in his legs, but they are reflexive and not caused by impulses traveling from the brain to the legs. It is a local response to stimuli, and it is normal for people who are paralyzed to have them.

They say that after an injury, 90% of whatever they get back will come back in the first 6 months. It is hard to believe, but we are only a little over a month from that six month mark. Of course, some things will come back after that, but there is very little chance that he would go from having no movement in his legs to walking.

Where we do have hope, is in medical technology. There is a rehab group that did help a local woman walk again after she was in a paralyzing accident. They were able to bypass her spinal injury and send the signal to her legs. These kind of things are encouraging. We don't know yet how or if this kind of technology will work for Isaac, but the fact that it is possible and even happening in our own community is exciting! In addition, there has been a lot of research that has gone into using stem cells to regrow spinal cord tissue. Although it is still a work in progress, there is some hope that this type of technology could help Isaac someday. He is young and we don't know where these technological developments will lead or what new discoveries and experiments will lead in his lifetime. If I think of all the things that have changed in the last 30 years since I was born, it gives a lot of hope for what Isaac's adult life may look like.

Another question we have gotten is about what Isaac eats. Right now, Isaac gets three "meals" a day and a continuous feed at night through a G-tube that goes directly into his stomach. Yes, this means he has a tube sticking out of his abdomen. It has a little port, called a "button," so we can remove the tubing and he is not stuck to tubes continuously. He did have swallow studies at the hospital and was cleared to eat all solids and drink all liquids, but he hasn't had much interest in eating. We suspect that part of this is because he doesn't taste or smell the same way he used to be able to. His trach bypasses his nose and mouth so those senses are somewhat dulled. Food seems to be less interesting to him than it once was. That being said, he does love apple juice! It is his beverage of choice, and he drinks it regularly. Occasionally, he does eat food. He likes all the good stuff like chocolate and oreo cookies! Even if he does eat, it is usually limited amounts. He has surprised us a few times and eaten enough to consider it a meal, but that is the exception rather than the rule for him. For the most part, this type of feeding works well for Isaac, but we do have some issues with him throwing up. So far, we haven't been able to figure out what causes it, and it has become fairly routine. He is on antacids to try to prevent reflux and hopefully keep it from damaging his throat. One of the good things is that he hasn't had a problem with aspirating fluids including the formula that comes back up. Using a G-tube isn't ideal, but he is gaining weight and growing normally, so he is getting the nutrition he needs.

Isaac is a happy boy. We are so glad to have him! If anyone can get through this with a smile, he can. He is working hard with his therapists and improving everyday. Thank you all for your thoughts, prayers and questions. We would love to answer any others that you have! Feel free to ask anything that you have been wondering or are curious about.

A quick update

Well, it has been a while, so I thought I'd post an update. Last week, Aaron, Isaac, and I went to Salt Lake for a bunch of appointments. Isaac saw Pulminology, Urology, and the wheelchair clinic. Aaron also had a consult and a procedure to take care of an AVM in his lung. It was a very busy trip! Isaac did well for Pulminology and Urology. Everything came back looking good! These are areas where we will continue to need follow up for him, but for now, things look good. He also got to drive around a motorized wheelchair. He had tried one out when he was in the hospital, and did pretty good with it, so we are starting the process of getting him one of his own. He will get a loaner chair in August that he should be able to keep for a month or so. He will have a checklist of things he needs to be able to do before Medicaid will pay for such an expensive piece of equipment, so he will be able to practice all those things and we can get documentation before we actually ask them to pay for it. Apparently, they don't believe toddlers can control a power chair or that they have a need for them, so it often takes a long time to actually get a chair. The ladies that I talked to said it would be a minimum of six months before they could get one for him. Still, we are optimistic. Isaac already passed off most of the requirements while he zipped around the blocked off parking lot! He had so much fun and pouted when we said it was time to stop. The ladies jokingly said we should send in a video of him pouting. It is hard to say no to a face like his! Anyway, it will take some time, but we are excited to be working toward getting a power chair for him.
The rest of the trip was tiring, and Isaac had some issues breathing a couple times, but mostly it went well. Aaron's procedure was uncomfortable, but uneventful and successful. It is nice to have that out of the way.
Since we have been home, Isaac has been doing great! He has been sleeping better at night, working hard in therapy, and he has wanted to get out of bed more and actually eating more too! He still has a long way to go, but we are happy with his progress.

A Little Bit of Luxury

When we moved and I was unpacking our master bathroom, I started thinking that the room needed something more. It has white walls and neutral counters and floors. White sinks, white tub and toilet and big mirrors reflecting all the whiteness! And guess what color my towels were? Yep. White. Our last place had brown tile and beige walls, so the white towels looked fine. Really though, they weren't very white anymore anyway. So when I was walking around Costco, I happened to walk past some shelves full of fluffy towels and bathmats! Was it on my list? No, but it was on my wish list. And well, I haven't bought new towels in almost 3 years. And my bathmat was still at my moms. So I bought them. Two big bath towels, hand towels, and an extra long bathmat.

I probably didn't need any of them. I could have made do with the ones we had. However, every time I walk into my bathroom, it makes me smile. I often take my shoes off when I go in, just so my toes can stretch and wiggle freely in the soft bathmat. I find the cool sage color relaxing and the soft textures soothing. When so much of my life is chaotic, hurried, and stressed, it is nice to have a room that I feel like I can have a little bit of luxury. Something that is just for me.

Even if it is the bathroom!

A Day in This Life

Here's a view of what a typical day might look like for us. Of course this varies. Some days I don't do anything that I don't really have to do... wait, actually, that's most days! I guess there are days that I don't do the things that really need getting done, but most days, I do try! Anyway, here it is! A usual day in the Lund household.

7am The nurse wakes me up at the end of her shift. We spend 5-10 minutes talking about how the night went and anything new that will need to be changed. Then she leaves. Usually, Isaac is awake and begins asking when he can wake up dad. Our current arrangement is that I can go to bed at 10pm (an hour before the nurse arrives) and Aaron gets to sleep for an hour after she leaves.

7:30 ish. After talking to Isaac, sometimes reading him a story, sometimes suctioning him or changing his diaper, I make some attempt at exercise. Sometimes this works, other times, I don't have the energy, and sit there watching Kung-Fu Panda or Blues Clues with Isaac instead.

7:45 I get Isaac's med's ready. There are 5 different medications that I have to give him. They are scheduled for 8:00, but I usually try to give them a little early so that I have them done before we wake up Aaron.

8:00 Usually, Isaac wants to be involved in the waking up of Dad, so I unhook him from his monitor, ventilator, suction, and feeds. Hopefully I remember to turn of the humidifier that goes with his vent, otherwise, it runs all day. I can then take him to our bed where he "yells" in his not very loud voice, "Wake up, Dad!" You really have to hear it. He has to use a lot of air to talk, so each syllable comes out on a different breath. It's more like, "Wake... Up... Dad!"

8:15 For the next hour or so, there's not much that needs to be done, but the kids usually start getting up and asking for food and whining when I tell them they have to get dressed. Aaron gets up and starts getting ready. I usually get dressed and have some breakfast.

9:30 This is when Isaac is supposed to get his bowel program. It actually happens on time about half the time. It takes about 40 minutes from start to finish. I doubt many of you really want to know what this entails, but we will just say it is his own special potty training program.

10:00 Isaac is supposed to get his morning feed now, but if other things haven't been on schedule, it generally gets pushed later.

11:00 If Isaac has therapy, this is when we do it. If not, we all sigh a great sigh, because it means we don't have anything else to worry about for now. Except for housework. So now is when I might try to vaccuum, get the kids to clean their rooms, sweep and mop, or clean a toilet or something. It can't be too intensive, because soon the kids will be asking for lunch and I will be getting hungry myself. On therapy days, we don't get much done.

12:00-2:00 Lunch can happen anytime in this time frame. It's usually whenever the kids say, "I'm starving!!!!"

Things in the afternoon get less scheduled. Isaac gets a feed at 2:00 (unless the morning one was late or he actually ate and drank.) After the feed, he gets his afternoon med's. The kids only have permission to play the Wii or other computer type games between lunch and dinner, so they are usually glued to a screen and I take a break or try to get more housework done.

Throughout the day, Isaac of course needs his trach suctioned, diapers changed and his position changed. We try to get him out of bed and into his wheel chair or some other seating arrangement. Sometimes I can read him a book, but usually I am busy or he is napping.

Aaron usually comes home at about 6:30. If I am really on top of things, I'll try to have something ready for dinner when he gets home. Usually though, I'm trying to figure out something quick and easy when he walks in the door. We are lucky if we sit down to eat by 7:00. Then it's getting the kids ready for bed. Lately, they have finally gotten to bed about 9:30, but 10:00 hasn't been uncommon. There was even one night last week that Leonora came wandering out of her room after the nurse got here at 11:00. Once they are in bed, I usually clean up the kitchen, the table, and the living room. I usually get the dishes going and put away whatever has been left out. Depending on how late the kids go to bed and how much cleaning up there is to do, Aaron and I might have time to watch something before the nurse gets here. Sometimes I stay up and we do that, and sometimes I go to bed while Aaron waits up for the nurse. If we are lucky, there are no interruptions during the night and at 7:00 the next morning, it starts again.

I should note that starting this coming Friday, Isaac's nurse will be coming at 10:00! A whole hour earlier! That should make getting sleep a little easier. :)

Blessings part 1: It's the little things

I am grateful for our new apartment. It allows us to be close to appointments and Aaron's school. It's the right size, the right price (although, I wouldn't mind if it were less!), and we can get Isaac in and out and around inside easily. Even if I do run over kid's shoes and toys that were abandoned in the hallway. I also love that there is a back yard with grass and trees and that the kids have made friends with the two girls who live upstairs. I am also grateful for an attentive relief society president and friendly ward members.

One issue, that will need to be remedied soon, is the sun that wakes me up before the nurse almost every morning! At 6:30 am, glorious rays of sunlight penetrate our mini blinds and my eyelids. I find it nearly impossible to sleep when my room is illuminated so brightly. I've never seen curtains as such a necessity before!

However, today, I am feeling blessed. There are clouds in the sky. I was able to sleep through the sunrise and was even a little startled by the nurse's knock at 7:00. The dimness of my room was a little miracle, and one that I felt immediate gratitude for. Perhaps it was all coincidence, but I like to think that Someone knew I would need those extra minutes of sleep this morning and set things in motion. And I am very grateful for that small blessing.

Losses part 1: A Little Loss

When I first joined Facebook, I bookmarked the site without paying much attention to which page I was bookmarking. It happens to be linked to a photo album of my kids. Everytime I click the link on my toolbar, it takes me to a page of pictures from Isaac's first several months of life. One picture in particular is of William, Leonora, and Isaac on the day that Isaac was blessed.


In this picture, Isaac is wearing one of the few things I have sewn on my own without any help. I had spent time picking out the fabric and pattern, carefully cutting the pieces, and rushed to finish it in time for his blessing. I had pressed it that morning and dressed him in it for his special day. It was the only time I actually made something for any of our children's blessings, and I was so happy with the outcome!


When he was blessed, we were in the process of moving from one apartment to another. In the week or so that followed, we spent several evenings at the old apartment getting things packed up and moved over to the new apartment. On one such evening, I had been gathering up towels, blankets and other random things that hadn't been moved over yet. We were short on boxes, and since most of what I was packing was soft, I packed it into garbage bags. I packed a bunch of Isaac's receiving blankets and his blessing outfit into one of these bags. While I had been packing, Aaron was taking a load of previously packed things to the new place. We talked on the phone, and he told me he would be on his way back soon. I finished up what I was doing and went downstairs to a neighbor's apartment where she had been watching the kids while we packed. I got into a conversation with her and was still talking when Aaron got back.

We took the kids straight to the car. Most of our conversation revolved around how tired we were and how we didn't really enjoy moving. When we got home, I thought briefly about asking Aaron if we should unload the car where I assumed he had put the bags that I had packed earlier, but we were tired, and I thought, it can wait until morning.

Can you all see what is coming here? The next morning, I went back to the old apartment. There were no bags in the apartment, no bags in the car. I called Aaron and he confirmed that he had thought the bags were trash and had thrown them away the night before. We hurried down to the dumpster, but found it completely empty. I was horrified. I called Aaron, and he felt terrible. I had lost the best of my towels, blankets for Isaac, William's Superman towel, and other random articles of clothing, but most of all, my new baby's blessing clothes that I had lovingly worked to complete. I sobbed out loud. I couldn't believe that it was gone, and what was worse was it had only spent about 12 hours in the garbage. Had I been there a couple hours earlier, I'm certain I could have rescued it.

I probably spent an hour mourning the loss of a small jacket and pair of pants. I'm sure that the stress of moving, lack of sleep that comes with having a newborn, and the hormones that were not back to normal levels, didn't help my emotional state, but I am still a little sad that I don't have that keepsake from a special time in my little boy's life.


A loss is a difficult thing to measure. It all depends on our own experiences and perspective on life. Is this a monumental loss? No. I think that this could be considered a relatively small loss. My life has and will continue in a relatively unchanged manner. But it was important to me. It's something that I will always remember and miss.

Searching for the New Normal

We first heard the phrase, "new normal," when we lost our daughter Renee. When something that dramatic happens, life will never go back to the normal that it had been before. It's like going from a smooth flat road to a hilly winding road. Nothing about the two roads is the same other than the fact that they are roads. Nothing can be the same about life before and after those type of events other than it's still Life. Hills and switchbacks are normal for a mountain road, but if you found them in an otherwise flat landscape, that would not be normal.

We've found ourselves again searching for that road that will allow us to move forward. Normal has escaped us for the time being. We had been traveling along our normal path and suddenly found ourselves speeding along streets we could never have known were ahead of us. The hospital had become a sort of temporary Normal for us during the 7 weeks that Isaac spent there. But we knew that wouldn't be forever and we didn't want it to be either. When we got him home, we were in the process of moving to a new home, so things didn't get a chance to get used to being home again-let alone get used to having nurses in our home, boxes of medical supplies and equipment to figure out what to do with. Even when we moved, William stayed at my parent's so he could finish the school year, so we still weren't all together for most of the week.

Now we are all together in our new apartment. I am still trying to figure out where everything fits best, and we are still trying to make some kind of schedule that works for our family. Our winding street has merged into a massive junction of freeways and city streets and ours is a complicated path. I imagine there will be a few U-turns along the way. I feel like "Normal" is close, maybe on a parallel street, but, as with many street and highway systems, seeing where you are going is often a long way from being there. We are beginning to see what our New Normal will look like, but we still haven't figured out exactly how we are supposed to get there. One day, the things we struggle with will become second nature. Then I will feel like we have found the now elusive Normal.

Comfort Food

The fact that I can't fit any of the pants I was wearing when Isaac was lifeflighted to Primary Children's, is proof that I have indulged (perhaps more than I should have) in quite a bit of comfort food recently. There has been chocolate, ice cream, burgers that were much too big, creamy soups, pizzas, and big plates of pasta, however, some of the most comforting meals I had while in Salt Lake were omlets.

I don't know if this is strange to others, but for me, it is. I like a good omlet, sure, but overall, eggs just aren't really what I think of when I am looking for something to feed my stress and sorrows.

At least, they didn't used to be.

But of all the places we ate, the one I miss the most is The Blue Plate Diner. And the menu item that I miss? Yep, their omlets.

The Blue Plate. It's in this funky little building that looks like it's been added onto multiple times. It has rusty bikes chained up to the front of the building. It has an odd assortment of clocks and art from the community. When you walk in, they ask you to seat yourself. I wouldn't say the place is run down, but it's obvious that the experience is not about the atmosphere of the place. It's about the food. For me, it's about the omlets.

The first one I had was "The Benedict." Honey peppered bacon, cheddar cheese, and hollandaise sauce wrapped up in eggs and served with potatoes and your choice of bread. And oh. is. it. good! Something about the sauce smothering the warm eggs and bacon takes breakfast to a new level! And you know what's really great? Breakfast is served all day! So later when I had been craving an omlet all day, I was able to go (with my good friend Rachel) for dinner and try another omlet! At the time, I was very stressed, and looking for some comfort. And it came in the shape of an omlet. This time, it was "The Spanish." Cheddar cheese, onions, green peppers, salsa, sour cream, and guacamole. I am a big fan of avacado and have a hard time resisting anything topped with them, so the guacamole caught my eye. And the waitress said it is her favorite. There are not very many meals that I can recall sighing over. This was one of them. With each bite of this huge omlet, I felt the warmth and goodness of the meal sinking in and with each sigh, the tension I had been holding onto released. I had something I could enjoy during a time of immense stress.

I cannot say if this is the best meal I've ever had, but I can say it was the best meal I could have had that day. I'm sure that there are not many health benifits to eating a giant omlet smothered in cheese, but it healed my aching. I don't know how many stars a critic might give The Blue Plate Diner, but I know I'll go back again.

Just a couple pics...

I tried to post these while Isaac was still in the hospital, but could never get it to post.
Isaac smiling. He is such a happy boy-most of the time!

Here he is in a less than happy moment. He was refusing to work in Physical therapy. He's still really cute though!

This Is Hard

Just in case you were wondering.

I am home right now. I drove 4 1/2 hours today so I could see Leonora perform in her first dance recital. Aaron is still in SLC with Isaac. Tomorrow, I will be looking into housing in St George, doing a little food shopping, picking up some Tupperware flyers, and driving back to Salt Lake. I am tired. I feel like I should be saying good night to Isaac. I miss having my husband with me. I was unexpectedly overwhelmed by all the people and noise at the dance recital. I was wondering before it started if I would make it through the whole thing.

But I know that if I had stayed with Isaac and Aaron, I would feel terrible for missing Leonora's recital. I would be missing her and William. I would still be exhausted.

I am glad I got to see Leonora dance.

I feel so torn between here and there. I am really looking forward to having us all together again. I'm sure that will bring it's own challenges, but we should be together. Things are better when we are together.

Counting Blessings

Right now, it's easy to feel overwhelmed. Isaac has been in the hospital for 5 weeks, Aaron found out this week that he has AVM's in his lungs and brain that could be fatal if they aren't taken care of. We are hundreds of miles from William and Leonora who often ask when we will be bringing Isaac home. We've had to learn everything the nurses are doing for Isaac so we can do it all at home. In spite of all these things, I have been equally overwhelmed by some of the amazing blessings we have seen. Here are a few:

1. Isaac is alive.

2. Isaac's AVM was in the spine, not the brain where it could have caused serious brain damage.

3. The increased awareness of the dangers of HHT among family members.

4. Being so close to an HHT clinic. There are only about a dozen in the US.

5. Being able to get Aaron's brain and lungs scanned right away.

6. Finding Aaron's AVM's so that they can be treated before something happens to him.

7. Having so many friends and family and strangers who have helped us, prayed for us, and asked us how things are. There are far too many to start naming all those who have helped us, and there are probably many that I don't even know of.

8. How Isaac has progressed. Really, he's amazed everyone.

9. Having such dedicated doctors, nurses, surgeons, and other staff. We owe them for Isaac's life and so much of his progress.

10. My husband and children. They are all incredible. I'm so greatful to have Aaron with me and look forward to having our family back together again.

Beyond Adversity

I wrote this on Thursday, March 31st, 2011.

When William was only 10 months old, he had his first surgery to correct his clubbed feet. shortly after that, he had a second surgery to remove a pin that was placed during the first surgery. In the short time that passed between his first and second surgeries, he seemed to have forgotten the first one completely. When he had his 3rd surgery three years later, it was as if the first two had never happened. He had no memories of those experiences, so he had nothing to fear from hospitals and doctors. However, when he had a 4th surgery about a year and a half after the third, he remembered everything from his previous procedure. We wanted to prepare him for what was going to happen, so we explained that he would need surgery to straighten his feet. With a hurt and frightened look on his face, he asked us, "Why?" We tried to explain to him that the surgery would help him walk and run without tripping. We told him it would help him he stronger and healthier. We told hm he would be able to run faster. But all he could think of was the pain and discomfort he had experienced with his previous surgery. He remembered having to wear casts for weeks afterward, and the weakness that came after not using his leg muscles. he knew this was going to be painful and difficult. We felt terrible sending him off to surgery We knew that this would be hard for him, but we also knew that he needed it and it would bring him more happiness than pain over the course of his life. In fact, suffering in the short term prevented him from suffering in the long term.

I have often thought since then of my own experiences in life. I believe we are all children of God, so I imagine He must feel similarly to the way I felt with William. If I could have fixed William"s problems without him suffering, I would have, but he had to go through that in order to have a better life. Sometimes we have to go through trials so that we can grow. Isaac has had several priesthood blessings while he has been in the hospital. One message has been consistant in all of them. God has a plan, He will not let Isaac suffer unnecessarily, and this will bring opportunities to his life that he would not have had any other way. While none of this makes the daily burden lighter, it does give me hope and makes enduring a little easier. I trust that there is purpose in this trial. I think that if I could have the same conversation with Heavenly Father that William had with us, He would tell us the same things that we told William: "This will make you stronger. If will make your life better."

This time is difficult. We are tired. There is very little that is certain about Isaac's future. Yet I do feel hopeful. There is a law in science that says that for every action, there is an equal and opposite reaction. I believe that there is a Heavenly truth that for every trial, there is an equal and opposite blessing. If this is true, as I believe it is, then Isaac and our whole family will have many blessings-some of which we are already seeing. Isaac has always been our ray of sunshine, and we believe he has a bright future just beyond these clouds of adversity.

My miracles

*This is the first chance I've had to blog this. I wrote it on the morning of his second surgery, before we knew he would be having surgery that night.

My children are all miracles.

William was born with stubborn clubbed feet (feet that are bent inward) and a stubborn introverted personality to match it. In spite of-or perhaps because of this personality and physical limitation that he was born with, he walks, runs, plays and fights like every normal 7 year old. What he lacks in physical ability, he more than makes up for in mental ability. he has always been a very bright boy who excells in math and science and has a thirst for knowledge in all areas. His miracle is his lack of disabilities.

Leonora was born perfect. She was like a beautiful porcelin doll. I cannot even begin to count the numorous peoplew who would pause in grocery stores and other public places to tell me how beautiful my baby was and how doll-like she was. Once, an older lady in Walmart nearly ran me over with one of those electric riding carts. She thought that Leonora was a doll in a carseat until she saw Leonora move. She was so shocked, she swerved and nearly collided with my cart! Shortly before her 2nd birthday, Leonora got pneumonia. Our whole family had had the flu, but as the rest of us got better, Leonora continued to worsen. She was admitted to the local hospital and then lifeflighted to Primary Children's Hospital. Her combined hospital stays were a full two weeks. We were so worried for her during that time, but she fought through it and was blessed to avoid more serious srgery to remove a part of her lung. Today she has an incredible amount of energy. Sometimes it drives us all a little crazy, but she is also full of love. Her healing from the pneumonia, her high energy, and her boundless love for all those she meets (and often those she hasn't) are Leonora's miracle.

When we found out that we were expecting another child just after Leonora's 1st birthday, we were exited and happy. I felt this baby's movements earlier and stronger than with either of my previous pregnancies. At about 20 weeks gestation, Aaron and I went to the hospital for the standard, mid-pregnancy ultrasound. This is when most people find out the gender of their baby. It's something moms anticipate and look forward to. For us, it was the first chance to see our baby. Because of our issues with William's feet, clubbed feet was at the top of my list of concerns. Our baby showed no signs of this deformity, but something more serious. She had a cyst at the back of her head, and her body was retaining fluids. Her kidneys had already ceased to function. At or first look at our baby, her time on this Earth was coming to a close. Her heart continued to beat for about 2 1/2 weeks before her sweet spirit returned to Heavenly Father. At about 23 weeks gestation, the doctor induced labor, and out sweet angel was born. Her birth should have been a great time of joy. Instead, it was our greatest loss. It is impossible to explain the sorrow of loosing a child to anyone who hasn't experienced it. I feel it is the greatest blow a parent can experience. Despite this heartache that consumed my life for many months, I feel that our angel, Renee, is a great miracle in my life. Having greater understanding of this sorrow has given me greater empathy when those I know have lost children. It has proven that I can get trhough more than I thought I ever could. It eventually gave me strength. Renee means "reborn." I believe that not only will she be reborn into a new and perfect body fit for such a strong spirit, but her presance in our family has been a sort of familial rebirth. She changed how we function as a family-for the better. I believe she was given that body because she was one of the few spirits who could suport it for that long. Her condition is a common cause for early miscarraiges, so reaching the point of having a fully formed body is unusual. She was a miracle.

About 6 months after we lost Renee, we found that we were expecting again. There were a lot of mixed emotions about that news, but in general, I was happy about it. We had extra tests that we hadn't had before just to give us reassurance that everything was okay. A few months after the 1st anneversary of Renee's birth and death, Isaac was born. He had perfect timing! He was born early (unlike my other children), and easily. I was overcome with joy and relief the first time I held him in my arms. I sobbed and cried and held him close. I didn't want to miss anything about him-the way he looked, sounded, smelled, and the weight of him in my arms. We picked the name Isaac because it means "laughter," and his middle name Nathan (after his two uncles) means "gift." He was our gift of laughter, sunshine, joy, and hope. He continued to live up to his name. I often say he was born smiling. i think I recorded is first responsive smile (one that was made in reaction to my own smile) at about 3 weeks old. As he grew, he developed normally. There was nothing exceptional about when he first walked or said his first word, yet his pleasant deminor, quick smile, beautiful eyes, and adorable dimples, made him exceptional in every way. As soon as he could walk, he became my biggest helper. He always wanted to sweep and vacuum with me and help me with dishes and laundry. With Isaac, house work could even be fun! He has been my biggest miracle. He gave me everything and more than I had lost when Renee's heart stopped beating. My other children have always brought me joy, but giving happiness seemed to be Isaac's life mission.
Today is Monday, March 7th, 2011. We have been in a hospital since I took Isaac to the ER on Friday night. He had lost movement in his right arm and leg. He had been getting over a cold, so it was originally thought that he may have pneumonia, menengitis, or both. When he was getting worse, the doctor decided he needed to be life flighted to Primary Children's Hospital. By the time we arrived at Children's, Isaac had not been moving much at all for sometime. His movement and responsiveness continued to decrease. It was decided that this was a nuerological issue and to find out for sure what was going on, he needed an MRI. They told me it would be about 2 hours for the MRI. About 3 1/2 hours later, he finally returned and I was given bad news. He had an AVM burst (a malformation of blood vessels that causes them to be weak). His AVM was located on his upper spinal cord which is why it caused his immobility. Emergency surgery was done to relieve swelling of his spinal cord. I was told that there was a significant possibility that he could bleed during surgery and that if there were bleeding, there may not be any way to stop it. As a mother who has lost one child, I understood too well what they were telling me. We were told he'd made it through with only minor complications when his heart rate and breathing slowed to extremely low levels. When we recieved the news that he made it through, there was a huge sigh of relief from me and my friends and family present in the room. I felt we had recieved another miracle. Now he lays in bed. He occasionally opens his eyes, turns his head and has had some small movements in his arms. These too are small miracles; however, there is no gaurentee that he will be able to do basic things on his own ever again. Even breathing on his own may never be a possibility. The good news is, he has no brain damage. It is only in his upper spine, which affects all the nerves that control his motor function.
Right now, we are praying for a bigger miracle than we have yet recieved. I deparately want my little boy to be whole again. I know that through God all things are possible if it is in accordance to his plan. I can only hope and pray that is plan and my desires match up. I also know that miracles take faith it takes. Please join your faith and prayers with ours for the recovery of Isaac. Pray for us and his doctors to know how to help him. Pray for us all to have the strength to get trhough this and to accept the outcome-whatever it is. Pray for us to see and accept God's plan for our family. Every prayer and good thought sent our way helps. We are so appreciative of all the love, support, and prayers we have received. They keep us going. Please keep sending them. Thank you so much.


*Since I wrote this, there has been one more surgery to remove the AVM. We have been very blessed to have amazing doctors, nurses, and others to take care of Isaac. He has been more alert. Some days are better than others, but he has smiled and moved his arms more. Today he will have a Tracheotomy to help him breath. He has been on a ventilator with a tube in his mouth, and we are anxious and excited to have this procedure done. hopefully he will be able to start intensive rehabilitation in a few days.

What happened this week...

Monday: Leonora cut her hair. No she did not get a haircut, she cut her own hair. She told me later that it was in her way.

Tuesday: Leonora had ballet and asked for a pony on the way home. I find this hilarious.

Wednesday: I did laundry. Exciting, huh?

Thursday: Went tux shopping for Aaron (for performances) and camera shopping for me (for my birthday!)

Friday: I pruned some of the overgrown bushes around my kitchen window. I couldn't fit all the trimmings in the garbage can, but you can hardly tell I did anything from outside. It does let a little more light in though, which was my goal!

Saturday: I turned 30! Wow... scary... Aaron and I went out to celebrate! We saw Tron (for free!) and stopped at Red Robin on the way home. We split a burger and an appetizer, and couldn't eat it all!

Sunday: We ate my marvelous birthday cake that my mom bought from the Schwan's man! I highly recommend their chocolate cake! Mmmmmm!

Someday I'll have a table and be able to eat at it too

I have been living in my parent's basement since the end of May 2010. Can I just say, this is not the most comfortable nor pleasant of living arrangements? Don't get me wrong, I am grateful for a place to live and I know it's not the best of worlds for my parents or siblings either. And we all try to deal with the situation.
Today, I tried once more to move things around in the room we call the Rumpus Room. It is the room where the kids go to make a rumpus I guess. It is also supposed to be my kitchen, dining and living room. Now this room is not a small room, but it is also not really large enough to fulfill all of those requirements. And it also has become a storage area for some things that have been kicked out of bedrooms and what not. What I'm getting at is, it's crowded. So occasionally I spend my day moving things around in attempt to make something work. Today was one of those days. I'm still trying to decide if my attempt did much to improve things. I think mostly what I did was make more room to play for the kids. Not my primary objective, but I suppose it's something. Maybe next time, I'll be able to use the dining table... maybe.

I'm trying to blog more often again. I know, I'm horribly inconsistent.

We are going out of town for a long weekend and all Leonora wants to do or talk about is packing. She wants to pack, pack, pack! while it's great to have someone around who is excited to help out, her help is not always very helpful. Isaac also loves to help and is even less helpful! Agh! Well, at least they are cute helpers! Leonora likes to pack her own clothes. She seems to thing she needs all of them. I've been trying to explain that where we are going will be cooler weather and she won't need all her summery clothes. We will also only be gone for 4 days, so we don't really need to bring her entire wardrobe! Haha! Isaac doesn't seem to care what he packs. He throws in just about anything: random socks, shirts, and Leonora's clothes that I just took out! He's such a happy little helper though! Hopefully he won't suddenly decide to start taking out everything that I'm trying to put in!