Tiny Salutations

Tiny Salutations


Saturday, March 26, 2016

Celebrating Easter (with vegan ideas!)

Easter is coming up quickly. Easter brings salvation and family traditions. This Easter has brought a few challenges to our home. 

The first challenge is that our family is vegan. This is a welcome challenge, but requires a bit of creativity either way. Every holiday tends to have some sort of challenge to work around when it comes to being vegan, but fun new traditions can be born out of that challenge. 

For Easter, egg dying is the biggest vegan challenge. We would not buy eggs to boil whether we were dying them or eating them. Last year, we bought craft eggs to dye, which you can read about here.  The craft eggs were vegan, but they floated, which presents an issue when you are trying to dye them. Nothing we tried (including poking holes in them) could get them to sink. So this year, I wanted to find something different. I tried to find something else we could dye, especially since I really liked the silhouette effect we used on the eggs last year, but I didn't have anything on hand that would work well. 

So we didn't dye anything. Instead, we covered the tree in our front yard with chalk and made decoupage "dragon eggs".

Our finished Easter chalk tree in its entirety (left) and up close (right)

Our son adding his part to our Easter chalk tree

Our Easter chalk tree- I think the colorful branches made it look really interesting. 

The chalk does not hurt the tree, and it creates a pretty awesome finished product. Also, anyone who can hold chalk and reach the tree can participate! It is pretty fun for little ones. This is definitely going to be our Easter tradition to permanently replace egg dying. (You can see more photos at the end of this blog post).

All of our finished "dragon eggs". The pink one with only a few scales is L's egg.
My "dragon eggs". The brown one is meant to look more realistic and the black & purple is my idea of what a Night Fury's egg may look like from How to Train Your Dragon.  I think the brown one came out best of them all. 

The decoupage eggs are more challenging. I admit this probably wasn't a great project for our son. It required touching glue (not a great thing for my sensory-sensitive child with autism) and a bit more dexterity in the hands than he currently has. We originally were going to make string eggs, which may or may not be easier to make, but ditched the string for dragon scales. In mid creation of our string eggs, with glue on our hands, I looked around for inspiration online for our paper decoupage eggs and found the dragon look here. L's egg looked much less... like an egg.

Materials needed to make a string decoupage egg
To make the decoupage dragon eggs, you will need paper (the color you want your scales), a crayon (we used black and silver), scissors, paintbrush, balloons, and Modge Podge. To start, cut lots of dragon scales out of the paper. To get a less uniform look, we rolled a crayon across the scales.  Blow up a balloon for each egg to the size you want your egg to be. Starting at the base, cover your egg in scales. To do this, paint Modge Podge underneath the scales, then lay the scale on top, pressing them onto the balloon. Before laying the next layer of scales on, coat the scales that are already on the balloon with Modge Podge. Once it is finished, let it dry overnight. To make a string egg, follow the same general process, swapping the paper for yarn. Cut the yarn into small sections, set them into the Modge Podge to completely coat them, then lay them around the egg. The neat thing about the string eggs is that once dry, you can pop the balloon and pull it out, leaving it hollow, and quite neat looking.

Chalk eggs for this year's Easter egg hunt
We opted out of giving our son a lot of candy this year. Not that there is anything wrong with candy. I love sweets. Last year, we filled L's Easter eggs from his egg hunt with jellybeans, of which he ate enormous mouthfuls. It's just that we decided to go in a different direction this year. We bought chalk eggs-which are, as they sound, chalk molded into egg shapes- to use for his morning egg hunt. We got these particular chalk eggs from the dollar store- 18 eggs for only $3!

We filled his Easter basket with a few gifts and books, including some vegan comics. I recently found vegan comics that you can order for free from PETAkids. Having autism, L gets hyperfixated on things, which can be a strength or a weakness. Being vegan is no different, and I consider it a strength. He takes being vegan very serious and lectures everyone any time he finds them eating animal products. He always says "We don't eat animals". Despite his age, he is quite mature in the way he speaks about it. Just the other day I heard him explaining to my Dad that he does not eat cows milk, he eats soy milk. Every now and then, out of the blue, he will say "Did you remember that Pappy ate chicken?! I don't eat chicken. We don't eat animals." or "Did you remember Uncle Ryan ate turkey?! I don't eat turkey. We don't eat animals." (this part referencing Thanksgiving two years ago!). So given that this is something that he is passionate about, I signed him up for PETAkids' Cutest Vegan Kid Contest. If he wins, they will award him a little gift pack, which I know he would adore. The contest includes a popular vote, so I would appreciate any votes to help him win a prize that I know he would certainly appreciate (especially with his upcoming surgery-see below).  You can vote for him here!

A bud on the chalk tree, just starting to release flowers
Fully bloomed flowers higher up on our Easter chalk tree
The second challenge to this year's Easter is L's upcoming surgery, which is the day after Easter. This surgery will be more intensive than his past surgeries. It focuses on his airway, which brings both hope and worry. The first part of the surgery is intended to be exploratory to get a better idea of just what is going on in there, and the second part of the surgery is for repairing problems in his airway. Problem is that they aren't totally sure what exact repair surgeries they will decide upon until they have completed the exploratory part of the surgery. So we have no certainty until he is actually under anesthesia. We do know that they intend on doing some type of repair surgery on the area causing him to aspirate (liquids going into his lungs rather than his stomach) and speculate that they will need to do some kind of repair, such as widening, to try to decrease the ease of his airway closing (as it has several times causing him to be rushed to the ER to start breathing again). So every parent would be nervous about airway surgery on their child, but it also brings hope that those nights in panic trying to rush him the ER may be less likely in the future. 

So given his upcoming surgery, he has had to be totally isolated- no friends, no family, no going into any public place even the grocery store, no therapies, no doctors' visits unless absolutely imperative- for two weeks. Isolation means no Easter egg hunts (we found a great one put on by the local Parent-to-Parent), which L is always exceptionally skilled at, no church service, and no family gatherings. L will also have to be isolated for a while afterwards, and we don't know how long it will take him to recover enough to visit with friends and family. The isolation afterwards is a huge bummer, since his 4th birthday happens to be only a few days following his surgery. We will, of course, do something fun- just the three of us- so I just hope that he at least feels well enough to enjoy it all the same. I just hope that he will come out of the surgery with either answers or solutions and recovers well. 

Happy Easter! He is risen!


L and his Dad drawing with chalk on the curb 
My husband's (left) and my (right) dragon eggs while drying

Friday, March 18, 2016

Participate in Earth Hour!

Join our family in Earth Hour!

This year's Earth Hour is March 19th, 2016 at 8:30 pm local time.

Earth Hour is a movement during which each year those participating turn of their lights for one hour.  It is a gesture to show that you are committed to thinking about your energy consumption.  

Our family has participated in Earth Hour every year since we first heard of it, which, I believe, was in 2010.  Each year our family has devoted, in addition to the lights off hour, the entire evening without power with the only exceptions being the refrigerator and medical equipment. 

Our family is very energy conscious and tend to use much smaller amounts of energy than our extended family (who joke about how strict I am), friends, neighbors, and community. However, this is a call for anyone and everyone to join. So for those that are not sure what to do with themselves during this hour, it's okay! You're not alone! 
Here some ideas of how to entertain yourself and your family during this year's Earth Hour:
        Read to your family by candlelight 
        Take a moonlit walk
        Lay out on the lawn and search for stars
        Have an 'unplugged' acoustic family concert in your living room
        Build a blanket fort in the dark
        Candlelight shadow puppets
        TALK to each other
So are you ready to participate in Earth Hour along with our family tomorrow evening?

For more information, you can start with the website and official video here .

Sunday, March 13, 2016

Forever Is A Lot To Ask

I haven't written a blog post in over a month, which is partly intentional and partly not. I've written at least eight blog posts, and although none of them were particularly bad writing, none of them seemed to fit my voice as it feels now. So I searched for the right words to share my heart- and what came to me was desperation, hopelessness, profound heartache, grief, homesickness, loneliness, pain, and even to my chagrin bitterness. So my silence has been a combination of depression itself and tentativeness in being that vulnerable. I seem to have lost faith in humanity and frankly expect to hear responses such as "You should just kill yourself". I'm generally a bit of a sensitive soul compared to the current state of society. I just can't imagine how we have allowed ourselves to bring up a world where insulting the appearance of babies with birth defects, laughing at the mentally ill, and sipping a latte while watching the disabled struggle is not only not chastised but often encouraged. So I am hesitant to share, but I'm also hesitant not to. I'm not sure yet if there's no point in trying or if by not trying that makes me part of the problem.

So.......... desperation, hopelessness, profound heartache, grief, homesickness, loneliness, pain, and even to my chagrin bitterness. 

This comes largely from the realization that this is it. This is our life now. You see, when you get a diagnosis that is not given with a time clock (ie. 'you have six months'), there is inherent hope. After each diagnosis, I tend to think "Okay, now we know why, and if I work really, really hard I can make it better or at least easier or maybe even resolve it." I mean if I learn everything there is to know about a subject, and I put an overwhelming amount of work into it, I can't fail, right? Well, before having a child and getting sick, that seemed to be true. That couldn't be more wrong now. It's not "better". Or easier.

When I was being emergency transferred to the University Hospital, nearly four years ago and 27 weeks pregnant, delivery was supposed to be the start of getting "better"- that is, if I lived. Then, when we finally left the NICU, that was supposed to be the start of our son getting "better", and somehow at two years old he "would be a typical child". I looked toward each milestone as the moment where it would get easier. Each milestone came and went, and it became only more complicated, more difficult. As each year passed we became more ill. Every year following my son's delivery, I was diagnosed with one or more new autoimmune diseases, each one making treatment- and daily living- more complex. The days in the NICU would not be the only ones that I would fear for my son's life.  There is no more hope to be had in future milestones. This is simply it. I'm not sure it is ever going to get easier.

Yes, I know that I am lucky to have my beautiful son and to see him grow into a boy. I really and truly do understand this.  That somehow doesn't seem to be enough to completely resolve my current disposition.  I think a huge part of this is.... People can do anything for a short period of time, but forever is a lot to ask. And chronic illness is often forever.

When the idea of a temporary life change turns resolutely to a permanent one, there is an amount of grieving.
I have lost the idea of who I am as the things that I used to feel define me- adventure, nature, hiking- have slowly been consumed by illness. I used to hike on average 20 miles a week and have now been resigned to paltry ADA wheelchair-accessible trails, which serve as only a mile or two on a very active week. Hiking was such a very huge part of my soul, and has thus been a very huge hole to fill. Previously if I felt depressed, uneasy, or worried, I walked it out, rain or shine, with my dog at my side as silent companion listening to my every thought.
I have lost my idea of motherhood as the things I dreamed of while cradling my tiny pregnant belly have been lost to illness. I dreamed of holding my tot by the hand as we explored the tidepools of rocky beaches and the fringes of wetlands, teaching him all the many things I know about these wondrous wild places. Instead, I have held his hand through nights of difficult breathing and days of therapies and doctors' visits, and to my despair, I have not been able to hop along tidepools with him at all, thanks to my wheelchair. I have felt myself cling to him tightly in fear of the nights that he has been rushed to the hospital, struggling for breath. He has been both bearer and witness of such suffering. I have felt such desperation for help, for improvement, in both medical and autistic/developmental aspects of his life.
I lost my idea of pregnancy itself, since my pregnancy ended before I had seen my third trimester begin and never had the chance to experience some of the things I was most excited for- a beautiful round belly, maternity and newborn photos, congratulations on my delivery, hearing my son cry nor holding him for nearly a month, and most of all feeling him kick in my belly- and have lost the chance to even choose to have more children.  
I have lost the chance to develop the "professional" part of myself. By that I don't necessarily mean a paid job (although that could fill that need). I just mean that everyone needs to feel like they are doing something important and for many people that needs to be in addition to raising children. If raising children fills that need for you, that is wonderful, and there is absolutely nothing wrong with that, but that is not the case for everyone. When I was five years old, I did two things, that I was very serious about and intended to follow through on until becoming disabled. First, I wrote a letter to NASA telling them to save a spot for me, because in twenty years, I would be hired as an astronaut there. They responded by saying, in a nutshell, 'Please do!' and sending me outstanding 8"x10" photos that I had tacked up on my walls until they were lost in a moving incident when I was fifteen years old. The second thing I did was write a book about how to save the planet that won author's awards for my school, school district, county, and state. I did so many things throughout my life as I dedicated it toward saving the planet- including my own research for my Master's degree in biology regarding ocean acidification (climate change affecting ocean chemistry). The first of these promises has been torn away by illness, and although the second promise has not been torn away entirely, illness prevents me from likely ever making a real impact in the way I had hoped (and has prevented me from publishing my own research).
I have lost financial security to illness. I am very good at being scrupulous with our finances, but I often hear people complaining about how they have no money with two or three times our income. It has taken many options in life away, such as ever owning our own home. And as of right now, it has taken away home itself. We live in a house yes, actually a very nice house, but it is just not home. This is because we lived the last ten years about 150 miles North of here, and it is so different here. I am simply not a city person at all, and I desperately miss the places and people of home.  My desperate need for nature was fulfilled just a small amount by living in the woods back home, but now, this commercial setting has left that need totally unsatisfied.

I think one of the most difficult "forevers" to accept is the lifetime of pain. My emotional pain is simply much outmatched by my physical pain. There are days that I have found myself unable to find relief in any way. Some days the significant amount of pain medication I am prescribed cannot even begin to touch the pain I experience. I hurt too much to lie still and too much to attempt to move. I begin to vomit repeatedly from my body being unable to handle the pain, and my body is too weak to handle the vomiting.  I am no stranger to vomiting, but my body has grown so weak that it has become very painful to do so, often severely pulling several muscles at a time and breaking blood vessels throughout my skin. At times my body is at odds with itself- too tired to function, but too painful to sleep. I find myself praying beseechingly for God to end this.  The failure of my body has wrought the destruction of so much- the hope of tomorrow, the suffering of my son's body as the result of prematurity, the ability to take part in the things I love and the person I am, a marriage free of the burden of caregiving.

I know that my life also holds beautiful things. I am a photographer, not only to feel like I can be good at something still, but also to constantly remind myself that there are beautiful things plentiful all around me so as to never forget.  My son is an absolute miracle- one that I could have been without. In fact, as I looked over my chart notes during my hospital stay with him, there was a simple line stating his death was "imminent", which surprised me, even after witnessing how sick he had been. Every day he brings beauty to my life.  He has proven to me that the love of your child is unlike that of any other.  I try very hard to be brave and be positive and be the mother that a miracle deserves. However, I also try to be truthful, and the truth is that illness is not all cliches about working with what you are given and not being defined by anything and not being given more than you can handle. The truth is that long term illness does wear on you.  Sometimes it is emotionally painful.  Sometimes it is more than you feel you can take and all you can do is let time pass and only then simply, because there is no other choice.  And it certainly defines you, just as any other part of your life defines you.

Wings of an insect
Portion of an insect wing
Portion of an insect wing
**I'm not certain of the type of insect this is pictured above- I initially thought it was a moth when knocked off the ceiling with a towel in our house, but upon microscopic evaluation, I decided less likely. I have little experience with entomology, but may try to label this insect later!**