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.