Hero Wave

I heard a story today about a then-six-year-old boy who wrote a book and sold it to raise funds to research his friend’s rare medical disorder. I sat in the car, listening to the story on my radio, and wept. I wept because of the incredible thing that boy did for his friend. I wept at the simplicity and beauty of his dreams and goals and for the heart of a young boy. And I wept because I’ve been on the receiving end of people’s exceptional generosity.

Here’s the thing.

So many people will hear that story, and feel like they can’t possibly give what that boy gave to his friend. As humans, we often look first at our weaknesses and what we can’t do. But that boy didn’t do that by himself. He had an idea, and he acted on it, but his idea only worked if thousands of individuals reached into their pockets, purses, and wallets and openly gave whatever small amount they could. That fundraiser has reached over a million dollars for a disorder that most people don’t know exists. There was virtually no funding for it before, and now, because thousands of everyday people chose to do one small thing, there is more than a million dollars to fund research where there was nothing before.

Do one small thing, and make a big difference.

My own family recently benefited from a fundraiser. Ours was meager compared to the above example, but it felt no less incredible at the time. I have a disabled son. He is paralyzed from the chest down. He has a tracheostomy tube to help him breath, and he gets most of his nutrition through a g-tube. We don’t travel with him unless we have to. Travel is difficult, and in addition, it’s expensive. Out of state travel has the added challenge of losing our usual night time nursing care. Insurance and other medical laws make it impossible for us to get a nurse in another state. My husband’s family lives in California. We live in Utah. We hadn’t taken him to visit since he became paralyzed because of all the challenges. Then my mother-in-law was diagnosed with cancer. After treatments, she had a couple clear scans, and then the cancer came back. It returned hard and fast, covering her liver and advancing on her lungs. Her prognosis became terminal, and it suddenly became essential for us to find a way to take our whole family to visit.

This is where our heroes stepped in.

A fundraiser was started, and before I even had a chance to share it on my own facebook page, hundreds of dollars were pouring in. Within 8 hours, the goal had been reached. And then it was surpassed. I don’t know who many of those donors were, but they are my heroes. They did something for us that we could not do for ourselves. We had anonymous donations for hundreds of dollars. Some dear friends who have their own challenges gave us $5, $10, or $25. Every donation filled my heart with gratitude. I still feel overwhelmed by the number of people who helped us reach that goal. They are our heroes.

We recently went on our trip. In addition to financial help, people volunteered to help with nursing. Some stayed with our son for only three hours. One friend stayed with him for three nights. A neighbor gave us a place to stay, and another generous soul gave us his airline points. Family members also helped coordinate all of the numerous details. I have no idea how many people touched our lives and made that trip a reality. There is no possible way I could count them. What I do know is that we couldn’t have done that trip without each of them. It was their combined kindness that gave us a gift of immeasurable value.

Be heroes together.

When you participate in something like this, new realities come to life. One person raising their arms in a stadium, means nothing. When everyone raises their arms in rhythm with those around them, it creates a wave. No one can be a wave alone. Without each other, our individual efforts can seem meaningless. However, when we raise our arms together, when we allow ourselves to be swept into a movement, we are powerful. We can be heroes together. Be heroes together. Be part of someone's Hero Wave.

Help make a difference. There's always someone with a Go-Fund-Me somewhere. Check out your friend's facebook pages. If they aren't struggleing, they probably know someone who is. Look for local charities that help in your community. If you don't have money, look for oportunities to donate your time. Look for a pregnancy resource center, a shelter, or food bank where you can volunteer. And if you can't find one that you like, here are some charities that I'm partial to.

Make-A-Wish Foundation-Funds special "wishes" for children with life threatening illnesses.

St Baldrick's Foundation-Funds go to children's cancer research.

Children's Miracle Network-Funds children's hospitals

St Jude's-Children's research hospital.

Ronald McDonald House Charities-They give families a place to stay while their child is in the hospital. 

Big Brothers Big Sisters-Donate or Mentor a child.

There are many more wonderful causes out there. Tell me your favorite ways to give!

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A Special Gift

Earlier this month was the birthday of a very special boy. His name is Riley. Riley is our cousin's son who died unexpectedly after only 4 months with his mom and dad. This year, to celebrate his birthday, his mom asked friends and family to remember him by giving the gift of service to someone around us.

I also lost a baby just the year before Riley's death. We had been given a box of things from the hospital to remember our sweet angel. One of the things in that box was a tiny, crocheted, pink blanket. That was so special to us. It is one of the few things we have to remember her presence here.

That blanket was the first thing that came to my mind when Riley's mom asked us to give something in Riley's memory. So, I decided to give back something that I have been blessed by, and I started working on two tiny blankets to donate to the local hospital here. I wish I had gotten it done by his birthday, but it has been a crazy month! They are all finished up now, and I will be calling the social worker to see when I can drop them off.

Here they are: two special blankets that I know will go to special babies!

PS If you are wondering how to do this fun diagonal/crosshatch stitch, here's a link to the tutorial I learned it from!

A brief announcement

I've decided to start taking crocheting a little more seriously and have set up a facebook page, blog, and etsy shop. I would love for any of you to stop by and see what I've been doing! Here are a few links and pictures!

I just posted my first blog post on the new blog. Here's the hat I posted about.

This headband with flower clips is listed in my Etsy shop.

And these baby espadrilles are currently one of the posts on my facebook page.

Hope to see you around!!

One year at home

I was looking through some of Isaac's old paperwork, trying to remember exactly what day he came home from the hospital. I did not find anything that definitively stated the date of his release, but I found a couple that were dated April 26th. So I'll go with that. In any case, this week marks the first anniversary of when Isaac came home after nearly two months in the hospital.

A lot of what has happened and the care Isaac needs has become more routine, more "normal" for us, however, there are still days that it seems so surreal. Earlier today, Aaron told me how it sometimes seems so strange to him that our son has a hole in his neck which we are required to push a tube into and essentially vacuum his boogers out of him. Even after doing it for over a year, that's a bit odd. It's something that we have to do multiple times a day, so it has become very normal for us, but it's never going to be "normal" for a three year old boy to have all that going on.

We talk regularly and casually with Isaac about his feeding tube and the "feeds" that he gets through it, his trach, suctioning, the spasms in his legs that are a symptom of his spinal cord injury, and his "big" hand (his left, which works a little better) and his "little" hand (the right, which is noticeably more difficult to use). We talk about all these things just as any other parents might talk to their preschooler about lunch, or if they have a runny nose. Or which hand they want to use to hold a fork or crayon.

We have begun to finally settle into some sort of "normal" routine. Not that there are not bumps in the road along the way. Since late January, we have spent most weeks with one or two nights where we had to stay up with Isaac because we did not have nurses to cover those shifts. That has definitely been difficult and not something we want to get used to, but most of the daily cares and routines have become exactly that-routine.

What a strange thing to think of as routine! While we have become accustomed to taking care of all the extra needs that Isaac has, the realization that this should really NOT feel normal is what weirds me out the most! My "normal" has had a definite shift. Have you ever been on a road trip and dozed off in the car? Whenever this happens to me, particularly at night, I wake up feeling disoriented and not knowing which direction we are driving. So when the sun comes up, I am once again able to orient my internal compass and recognize which direction I am headed. That feeling of seeing the sun come up in a place where I was not expecting is, for me, really similar to what I feel when I recognize how much normal has changed for me. Like the world is just a little bit askew for a minute, but at least now I know where I am going.

I am sitting in my car, typing this on my ipod. So it might have typos. Not sure how much I care about that right now. Am tired. I just want to get away from life right now. I'm trying ro have some optimism about things getting better. We might have a new nurse for Isaac soon. Assuming this one's background. Comes back clear. Aparently she's got some pretty impressive experience, so that's good. It's hard to be hopeful when things have not worked out the last time we thought we had someone. And even if she does work out, I don't know how soon it will be. She haa to go up north dor some training or something and then come train with the current nurses for a couple nights. i am just rirwd of waiting though . I need a break now, not in rwo weeks. You know? I just feel so ceippled and trapped by life eight now. And I don't know how to change it. i am just trying to wait it out, which is not working well. I mean, I'll get there one way or another, i just know I can't handle anything else today. So I'm sitting in the car, being away from that life inside. Maybe if I am lucky, the kids will be asleep by the time my ipod battery dies, which will be soon. It just popped up a low batterey thing at me.
I am feeling in need of some major recharging myself. There just has not been much opportunity to do so lately. I guess I'm a little like my ipod. Only more emotional. The ipod does not cry when it's low on power. It just blinks that little box at me every minute or so until I plug it in. I think I need a sign I can wear around when my battery is low. Help me find a power scource before I pass out from exhaustion.

That would be good.

Then I need an extra long power cable so I can still get something done while recharging.

And some dinner. I think I should go have some dinner. That might help.

Sorry for the depressed rambling. Guess I will go give my ipod a recharge and see if there is one for me too.

Who I am

I am not a big fan of country music. It's ok. I like some of the stories the songs tell, but it's never really been my thing. However, in my second year of college, I lived in a house where cable was included in the rent. I also went to school in a tiny (seriously, tiny) Utah town where the only music channel available on basic cable was CMT. So it was not uncommon for me to turn on the tv to CMT while I cooked or cleaned or did homework or whatever. This is one of the songs that was on CMT at the time and has stuck with me. It has not stuck with me because it's a brilliant song, but because I identify with the sentiment. I could almost sing this about myself.



"It's all a part of me, and that's who I am..." I really identify with that line. Who am I? Well, a lot of it involves the people around me.

Today, a big part of what defines me is my family. I'm a wife and a mother, and those are big jobs. I AM a mother. It's not just something I do, it is part of my identity. After an evening out, a friend asked me if it was nice to go out and not be "Isaac's mom." I agreed, but it kind of nagged at me in my heart because I am Isaac's mom. I can't not be his mom. What she meant was that I didn't have to worry about all of that or be identified by anything other than me, myself, but I had to think about whether or not I really wanted to stop being his mom, even for a couple hours.

But I'm not just Isaac's mom. I'm also William's mom and Leonora's mom. I'm also the mother to my angel baby, Renee. Each of them has impacted how I see and interact with the world around me. I have learned and grown because of the experiences I have had with them. I know that as they grow, those experiences will only expand and increase my own growth.

I am also Aaron's wife. To pretend that I have not changed and grown because of him would be... difficult... and untrue. We each have gleaned many insights, interests, and tastes from one another. I think this must be why some older couples who have been married for many years begin to look and sound like each other. Of course, they never look identical. There are always distinguishing features that make them unique individuals, but their similar environments, habits, likes and dislikes, seem to mold them together. There are so many things that I enjoy that I may never have come across if I weren't married to Aaron.

I've had other friends who talked to me about finding something that is just me. I do have some things that I enjoy, that are not part of my duties as wife and mother, but even those, I can't really say that they came from me. The idea came from somewhere. For example, I like to garden. Someday, I'd love to have a big yard and fill it up with all kinds of plants and trees and little corners with benches and paths. I love that stuff. I wish I could enjoy it on a larger scale than a few pots by the front door. I'm even okay with weeding and pruning. But I think that came from a few people. In fact, I've had two different grandmothers who took credit at different times for my "green thumb." They are probably both right. I probably got some of it from my own parents as well. Perhaps my dad who naively handed me a hose as a toddler was the first to spark that desire. I'm not sure. I do know that it has grown with each encounter I have with a gardener in their garden. When I do have that yard, I imagine it being an amalgamation of all the gardens I have seen in magazines, or walked through in person, with a little bit of my own personality and whatever unique situations arise in that particular piece of land.

I feel like who I am is a lot like that yard. Any idea or moment that stuck with me, whether good or bad, has made me who I am in some small way.

"It's all a part of me, and that's who I am."

A little bit of craftiness

Two or maybe three years ago, this friend had discovered my ability to crochet. She then gave me a few skeins of yarn and told me to make something for her sometime. Well, I guess the time finally came! When the weather starts cooling off, I get the itch to do some crocheting and I happened to find a couple free patterns online that looked like a great fit for my friend and the yarn she gave me! So I started on a couple projects for her and her soon-to-be-born baby girl. I started working on a baby blanket from the soft white yarn she had given me, but it was taking longer than I wanted, and I wanted to get something sent, so I whipped up this cute little cupcake hat! I found a pattern online for one of these a couple years ago, but ended up modifying it a bit. Here's the original pattern.



Do you like my model? Hahaha!

Eventually, I did finish the baby afghan that I had started, and I think it turned out really nice! I had hoped to get it done a lot sooner, but life just gets in the way of crocheting sometimes!



I also made a cowl for her and made some fingerless gloves with the leftover yarn to match. I don't know why I did not get a picture of those, but here is the pattern and picture that goes with it. Mine ended up fitting a bit more snugly than the one pictured.



The fingerless gloves I just winged it! Haha! I used the same stitches as the cowl, but to fit my wrists. When it got to where I wanted the thumb to be, I skipped enough stitches to fit my thumb through. After that, I just did a couple more rows and called it good!

Strength

I get told a lot these days how strong I am. I don't know how I feel about that. I mean, I'd probably say the same thing to another person if our roles were reversed, but I don't feel that I am exceptional. The circumstances are exceptional and go beyond anything that I ever thought that I would be able to muddle through. Some days I do great, seriously, I amaze myself sometimes! But not most of the time. Most of the time, all I can do is muddle through, just trying to make it through the day and take care of the most basic necessities. Some days, I don't know if I even do that.

I remember shortly after loosing our baby, Renee, I met a mom with a severely handicapped boy. He had serious physical and mental disabilities. He was in a wheel chair. Although he was awake, and I sat only 3 feet from him, I don't think he ever acknowledged or even noticed my presence. That mom was not having her best day, I think. I talked to her a bit and her frustrations oozed out in her tone and manner. She was dealing with so many things that, even now, I just can't imagine. After that, I thought, this is why my baby didn't make it to term. Because I couldn't handle that day in, day out effort that it would take to raise a special needs child. God knew I couldn't do that.

In retrospect, I think it's safe to say I was wrong on more than one level.

Here I am, doing the very thing that I felt I was being saved from and even told a friend afterward that I didn't believe that I'd ever be able to do. If anything, it was the opposite of what I believed at the time: I was being prepared and given perspective.

But I still don't know what to say when people tell me how strong I am. I do feel that there is a core of strength within my outwardly mushy middle, but I don't feel that I deserve the credit for it. Heaven knows I didn't go out looking for it! Being strong has never been a goal of mine. It's been something that I have had to be forced into. So here I am, being forced to step up and be strong.

The wonderful thing is, it is not just me stepping up. As long as I am making an effort, I feel that I am strengthened beyond what I could normally do. And when I'm too burned out to make an effort, someone else is there to step in. I know I couldn't do this alone, and I am so grateful to have knowledge of and faith in a Heavenly Father who strengthens me. He has put incredible people in my life that have helped me more than any of them could know. My strength does not come from me. My strength comes from Him and from the people around me. I could not do it without His love and the love of those who have served our family. So many prayers have been sent to Heaven on our family's behalf, and I know that they have been answered. I have felt that love and faith and it has strengthened me through long nights, hospital waiting rooms, ambulance rides, emergency room visits, and the daily to-do's.

So thank you, thank you for adding your faith to mine, whenever you have. That faith and love is what makes me strong. Thank you for that strength.

Dread and Hope

Every time I have a friend who has some crazy sounding thing happen to their child, I mentally relive the hours I spent sitting in Instacare and hospital rooms the night before Isaac was life flighted to Primary Children's Medical Center. I have this new hyper vigilance for anything out of the ordinary.

I sometimes mentally go through the hours that led up to our emergency room visit and try to imagine what might be different now if I had realized something serious was going on sooner. Could we have gotten him help sooner? I honestly don't know. I don't know if anyone could know. When he had his first surgery, they couldn't do much because he was still bleeding on his spinal cord. They couldn't even see what was going on in there. This leads me to think that it probably wouldn't have made a difference. But I can't really know that, and I can't help but wonder.

I think of my two year old lying in a bed struggling so hard to breath that his soft round tummy lurched with the effort of pushing air in and out of his body. I remember the nurse waking me up after only two or three hours of sleep because they needed to life flight him. He was still conscious. Every few breaths, he would let out a little call for me. "Mom, " lurch, lurch, lurch, "mom," lurch, lurch, lurch... But there was nothing that I could do for him. I listened to the nurses and another doctor, whose name I don't remember, debating whether or not to "bag" him. I had no idea what that meant, but in my world then, bagging something meant putting it in a bag. I tried to picture what kind of bag they could put him in that would make anything better. They talked about trying to intubate him as well. Another term I didn't understand, but would very soon, because the life flight nurses would do it when they got there. And why were they taking so long? I had been woken up at 4 and been told they had called the life flight plane. The flight is only about an hour, so I didn't know what could be taking so long. When they arrived at 8:00, it didn't really occur to me to ask what had taken them so long to get there. They were too busy trying to save my child's life. One does not ask those things when they are busy signing papers to allow them to insert a tube in their child's throat (intubate him) so that he could breath with the aid of a machine. I had no idea then what we were all in for. No one knew what was wrong or how to fix it.

After the flight and the checking in, I talked to a Neurologist who would take Isaac in for the first MRI of his spine. It would take a couple hours. She seemed to have an idea of what it might be and although there was some urgency in getting an actual diagnosis, it sounded like something we would just have to wait out. Something his body would deal with on its own. He would probably have to be in the hospital for a few weeks, but he would gradually get back to normal.

Four hours later, I was awakened from a not so deep sleep and told he was being moved to a private room. Once I got to the new room, I was asked to tell them again when I had first noticed something was wrong and what had happened. As I recalled the details to them, they told me that it was not what they had previously thought. The doctor told me that there was something on his spine. The first thing I thought of was a tumor, but no, that was not what we were looking at. I had a brief moment of relief before they told me that it looked like a blood vessel had burst on his spinal cord. It was something called an AVM. I had no idea what that meant. I remembered the HHT that ran in my husband's family and caused bloody noses, and, I had heard, could cause bleeds in other areas like the brain and lungs. I tried to ask the Neurosurgeon if that could be what caused it, but I couldn't remember the letters. Was it THT? I couldn't remember, and the doctors didn't have the slightest idea what I was trying to express. Oh, well, it's probably not that anyway, but we need to get him into surgery right away. We need to relieve the pressure on his spinal cord by cutting into the bone. I had heard of things like that before.... Somewhere. I was approached twice, by two different surgeons, to tell me that if he bled during the surgery, there was a good chance they would not be able to stop the bleeding. Did I understand what that meant? Yes. Yes, I thought, that means I could be saying goodbye to my baby. But what choice did I have? He had not opened his eyes since the life flight nurses sedated him to intubate him. He couldn't get better on his own. The surgery that could kill him was his only chance at living.

Late that evening when the surgeon came out to tell us that Isaac was still alive and that the surgery had been at least a partial success, I felt like I could breath again for the first time in a very long 24+ hours. There was still so much ahead of us, most of which was unknown, but I could sleep a little.

That is what I think of when I hear of a child with unexplained and unusual symptoms. Not that I expect them to have the same diagnosis, but I remember the exhaustion and fear that ruled over me for those hours. Most of the time, their ER and doctor visits are far less dramatic and end with the child and parent sleeping in their own beds that night. I hope that every one of them has that outcome and dread learning of one whose experience more closely resembles ours.

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.