The Leggings Project...And Some Monsters, Too

Last summer, my sister-in-law introduced to me to Kendra of the Calling All Angels blog. She had just moved to Tri-Cities from Utah. I had read her blog before and was familiar with her story about her sweet daughter, Makenzie, who died of SMARD when she was only 5 months old.  I had been impressed with her strength, with her realness, and her honesty that she portrayed in her blog.  Having got to know her over the last several months I can actually say I am blown away by Kendra's strength, her endurance, the way she makes every moment count, the sweet mother she is, her loyalty in friendship, the service oriented way she lives her life...all of it and more.  She is such an incredible person and I am so very thankful to call her my friend.

Every year Kendra gathers donations for her Leggings Project.  She collects baby leggings (and a few other things) all year long for infants in the PICU and then donates everything she collects to Primary Children's Hospital in Salt Lake City.  (You can read more about the Leggings Project and how to make them HERE.)  She has donated thousands of leggings since Makenzie died and continues to do so.

A few months ago she approached me about helping her out a little and doing something in honor of Olivia and her story.  I jumped at the chance to give back, help out, and maybe make a sick child smile.  We came up with the idea of making little monster dolls, something lovable, something to snuggle, something bright, and maybe a little silly.  My twist was to make them one-eyed, give them an eye patch, or make the eyes different in honor of Olivia's battle with retinoblastoma.  There is a lot that makes Livi unique (and wonderful!) and her eye is something I want her to be brave about, have a sense of humor about, and be totally open about.

I spent a week in Utah with my grandma and two of my aunts making monsters (and some dolls and some puppies.  Honestly, anything associated with Livi SHOULD have a puppy somewhere.) And this is what we came up with.

This is what I hope is just the beginning.  We want and need your help!  We want this to be the biggest and best year for the Leggings Project yet.  Everything collected until June will go to Seattle Children's Hospital and everything after that will go to Primary Children's Hospital.  Help us with leggings or little monsters!  It's such a good cause.  You can't imagine the difference these kinds of things make, not just to the kids, but to the parents.  You would shoot the moon if it meant a little sunshine, comfort, and warmth to your sick child in the hospital.

The leggings are simple and easy to make.  Kendra has step by step directions HERE.   Can't sew?  Send us the socks, we will make them.  As for the monsters, there is no right or wrong way to do them, just give them one eye, wonky eyes, one eye and the other eye a star or heart or any other shape.  Get creative!  We tried a few different patterns we found for free online and tweaked them a bit.  We did figure out that THESE little guys made with felt were pretty easy, were just top stitched (no turning required!), and fast.  You can mix and match everything she has and they all turned out adorable.  We are trying to come up with a few more simple patterns and I will post them when we do.  Again, if you can't sew send us material and we will make them, or send us the bodies made and we will stuff and finish them.  Kendra also collects blankets, hats, and books as well.  Donations do not have to be big or grand to make a difference.  Even one pair of leggings makes a difference.

Spread the word, tell your crafty friends, tell your grandma!  This is such a good service project for church groups, youth groups, a service-oriented girls night, even an Eagle Scout project! (Ok, that might be pushing it, but maybe not!)

I am so excited about this! I am excited to share Makenzie's and Olivia's stories.  I am excited to teach Olivia to give back and teach her about service.  If we can help put a smile on even one child's face, I'm happy.

If you have any questions or need to know where to send items please email me at juliedecoria@gmail.com or Kendra at livingformrw@hotmail.com

Old Wounds

I miss my dad.

That's hard for me to say, and I really couldn't tell you what makes it so.

I think about him all the time, always have and probably always will.  But I don't always miss him, at least not in the way that makes me ache.  And it's been a very long time since I have felt this way.  But lately, I miss him in exactly that way.  It makes me uncomfortable.  It makes me angry.

Since July or so I have been grappling with some pretty intense anxiety. It was mild at first, but it has spiraled wildly beyond anything I have ever experienced.  I don't really talk about it.  I have had exactly one conversation about this with two of my friends.  But not much beyond that.  It feels as though my anxiety triggers something inside me, something I relate to my dad.  My reactions to certain situations, my feelings, my responses...it's giving me a sort of out of body experience, I'm watching myself deal with some difficult emotions from outside myself.  I watch myself and for the first time I feel like I'm seeing pieces of my dad.  But not in a good way.

And all at the same time I want to hate him, be angry, cry, and hug him and have him tell me it's all going to be okay.

I miss him.  I don't want to miss him. I like being in the state of acceptance I have been in for years, but somehow I lost that.  And nights like tonight it feels like he died all over again and I am so mad. Mad that he left, mad that I have his DNA, mad that I can't talk to him, mad that I can't hug him, mad that he doesn't know my children or my husband.

I don't know what to do with all this.  All this anxiety, all these old wounds opened.  It is so deeply complicated.  I can't bring myself to actually vocalize how I'm feeling.  I can type a few words on a keyboard, but I'm barely scratching the surface.

I try to remember the good.  There was so much of it.  But the bad, even though its over, was so bad that it still threatens to swallow me whole sometimes.

I'm fighting so hard for that not to happen. So hard.  It's a lonely battle.  I'm fighting it alone.  Because I am not my dad.  I am NOT my dad.  His past is not going to define me, no matter how much it tries.

But still, despite the anger and anxiety, I really miss my dad.

2014

I have a chalkboard hanging in my house that I write different quotes or scriptures on to serve as reminders (mostly to me) of what we need to be working on.  For the past six weeks or so it has said, "Let all that you do be done in love,"a take on 1 Corinthians 16:14.  I put in on the board on a day where I was feeling just so done with everything and everyone.  I was overwhelmed and tired and I was quick to show it to anyone and everyone near me.  Specifically and unfortunately my sweet little family.  It was that day that I realized how that I was feeling frustrated and tense more than I wasn't.  And if I was being honest with myself (which I was, as it was a very self-revealing kind of day), most of that frustration and tension were my own doing.  It was a direct result of a bad attitude.  Yes, my stresses were and are very real.  But I was responding terribly to those stresses. I saw some ugly things in myself that I hadn't noticed before.  I got on my knees and poured my heart out, cried some heavy tears, and put up a visual reminder to help adjust my attitude. And I have been trying very hard since then to change that. Sometimes I fail, sometimes I don't.  But I am trying.

With a new year, we all think about our resolutions.  I'm not going to pick specific goals, I've never been great at those.  I'm going to continue my theme of  "let all that you do be done in love."  All I have ever, ever wanted in my life was love.  Love of husband, love of my children, love of my Savior...seems easy enough. It's no secret that the last few years have been hard for us.  It seems like no matter how hard we try to keep our heads above water, something always comes along to try to beat us down.  I don't hold in my emotions well, and when that stress gets to me it directly affects this little family of mine because they love me unconditionally.  They are quick to forgive me.  It dawned on me that they may not always be so quick to forgive and that thought scared me.  So I am changing that.  And I am going to apply this to all areas of my life.

Marriage:  More love, more compassion, more tenderness, more forgiveness.
Kids:  More listening, more nurturing, less irritation, more patience.
Friends:  Less talking, more listening, more doing, less needing.
Body:  More loving my body as it work it out instead of hating it as I sweat through my frustrations.
Mind:  More creating, more challenging, less worrying, less judging, more clarity.
Spiritual:  More study, more stillness, more serving, more working, more, more, and more of all the good I know I can do.

I want to be that person, and I am trying to be that person.  For my family especially, I want to be a "face to call home."  I want to create a home for them that is a safe place for them when they fall.  Where there is no fear, no judgement.  Just love and understanding.  I want them to know that, and never question it.  I want to be the person I know I can be, that I need to be.  The person HE wants me to be. And this is the year that precisely that is going to happen.

So, welcome 2014!  Let's do some beautiful things together.

Dear Cole,

 

 

 

 

 

 

It's been a rough week, kiddo.  We've both been sick and up all hours of the night, even more than normal.  Sometimes, like now, you sit an pull toys off the shelf, examining each one, tasting it, shaking it, hitting it on the floor.  You are careful in your inspection of each item, turning it over and over in your hands taking in all the details and find all the cause and effects before you move on.  I like this about you. 

 

You are smart and focused for such a little man.  A month ago, you decided to hit a whole bunch of milestone at once.  You started sitting, pushing up on all fours, crawling, and pulling up on things in less than a week.  It was like you just made up your mind you were going to do just exactly that, and so you just did it.  I hope this sticks with you and makes life better for you always.

 

Liv calls you Twinkleberry. A variation of the nickname Tankleberry (the name Tank kind of evolved) Aunt Kiki gave you.  It sort of suits you.  It seems like a Twinkleberry should be an awfully happy thing, and you are definitely happy.

 

 

I think back on your birth often.  That hospital room was filled with angels.  You made a statement with your arrival, something I can't quite put my finger on.  But whatever it is, it fills me with complete joy and I am grateful every single day you are mine and I get to be a part of it.

 

I never want you to forget how much you were wanted.  I tell you this all the time, hoping that that thought settles into your subconscious and that you always know it.  I hope that you always know and remember that Dad and I are your biggest fans.  We want you to be happy being you, whether that mean you are a basketball player, a cellist, an artist, a cowboy, or some version of all of the above.  We love you for you, and we want you to be brave in whoever that is. 

 

 

I hope that I teach you to be kind.  I hope that I teach you forgiveness.  I hope that I teach you strength, especially in times you may be standing alone.  I hope I teach you chivalry.  I hope I teach your charity.  I hope I teach you to laugh with, not at, others and to laugh at yourself.  I hope I teach you love.

 

 

You have stolen my heart, little man.  You cannot even imagine. Remember that.  Please, remember.

 

All my love,

Mom

What I'm Learning

Over the last few months, I have had several conversations with various people concerning Olivia mostly concerning her health and chromosome deletion.  People have questions, generally lots of them, and most of the time I am more than happy to try to answer the best I can.  I want to be open, I want people to understand. I want people to be able to have a conversation about things like this, to better understand people who are "different," so that they can have conversations with their children so that they might grow up to be more kind, understanding, and compassionate people.  This world needs more of all of that. 

 

 

These conversations I've had have given me a lot to think about.  One question I get frequently that I have struggled to answer is "What's it like?"  What's it like dealing with a rare chromosome disorder?  What's it like not knowing this or that?  I've struggled to answer that.  Why?  Partly because I don't know but at the same time partly because the answer is so consuming that to try to put it into words could very easily cause me to curl up in a ball and cry in the corner.  But this, I think, is the answer.  These are the things you should know about what it's like for a parent of a child with a chromosome disorder, special needs, chronic illness, and/or developmental delays.

 

1. Looks can be deceiving.

 

Mostly Olivia looks "normal."  Except for her prosthetic, her chromosome deletion is not at all obvious.  Her geneticist, oncologist, and pedatrician and have all commented to me that they can almost always tell when a child has a chromosome abnormality.  There are markers and facial features that doctors recognize.  Not so with her.  Her disabilities are not in-your-face obvious and it takes some getting to know her for certain things and problems to be obvious.  Her speech delays, her low muscle tone, her inability to keep up with other kids, her delay in motor skills are not immediately apparent.  Therefore, I feel as though I am often trying to explain her, her behavior, why she does certain things, why she can't do some things, why some things are taking longer.  It's exhausting.  Even with teachers who know her, who know her history have expressed frustration over certain situations when she can't or won't do something because she "looks fine, she acts fine."  Inside I'm thinking, "Hey, it's an actual miracle this girl is even WALKING right now. Any attempt at tracing/letter recognition/or complete sentence is just an added bonus as far as I'm concerned." 

 

Even as her parent, I sometimes forget what I am dealing with and have unrealistic expectations.  And I get frustrated. I get frustrated like every other parent.  And then I remember.  And the guilt that comes with that is overwhelming.  And this happens too often.

 

2.  "Okay" does not always mean okay.

 

One thing many people have said to me and Brandon since Olivia's cancer went into remission is, "Oh, you must be so relieved!  It's over!"  Well, yeah we're relieved...for that part.  But no.  It's not over.  It is far from over.  Liv has a myriad of other issues.  Things come in waves.  And sometimes, like now, we are in a relatively quiet time for her health.  We have a long stretch between major appointments, but even still...her issues will never be over.  Never.  And furthermore, we will never know exactly what to expect due to the rarity of her chromosome disorder. She will be a question mark her whole life.  I've met a handful of other mother's (through Facebook or Instagram) with children with Olivia's same disorder.  Not one of them has the same set of problems.  They have a few similarities, but they are so different. There is nothing solid that any of us can compare our situations to. So every pain, every complaint, every muscle spasm sends a new wave of anxiety because I just don't know what's coming.  I know something is coming, but I don't know what exactly. And I can't even get in to potential emotional traumas she will inevitably have to deal with. So we celebrate every lull in hospital visits, but I am constantly waiting for the other shoe to drop.

 

3.  I get angry.

 

I have accepted the hand we've been dealt.  I do my best to deal with it.  But sometimes, late at night, when everyone is in bed and I'm alone with my thoughts, I get angry.  And sad. And I cry.  I allow myself those days.  I still mourn the things that have happened to her, that will happen to her.  I mourn the future I envisioned when she was born that I know will never happen.  She still has a future, obviously.  And there is a lot of sunshine in that future.  But still.  It's hard to explain, and it's hard to understand.  I try not to make sense of it and just try to feel whatever it is I feel in that moment and move on from it.

 

4.  I am hyper-sensitive to comparison and competition.

 

There are a lot of competitive women out there.  Not just physically competitive, but competitive about their husbands, their homes, relationships, and kids.  Ah, yes, kids.  I think we have all compared our children to other's children at one point or another.  We may not realize we are doing it but it happens, unfortunately.  Long before we knew about Liv's chromosome disorder, I had her in therapy in our local Infant Toddler program for delays in her motor skills and speech.  The comparisons then stung, but I thought then it was only a matter of her "catching up."  Now, it's like hot razor blades right to my soul.  Most people in my life don't do this or make me feel this way. Most. There have been a handful of individuals in my life the last couple years, people who I have explained my sensitivities to, but for whatever reason, they have felt the need to deliberately compare, brag, and then ask me why MY child isn't doing the same, or ask why I am not concerned she isn't doing something they think she should be.  They are deliberately hurtful in the ways the only women can be.  Sneaky, and back-handed.  Although maybe they feel their honesty is helpful?  I don't know.  To them, I have slowly, but surely, shut down.  I have no interest in maintaining contact with people who make me feel like every hurdle, every trial, and every milestone Olivia has met have not been the complete and total miracles they are.  I have zero interest in exposing my child to people who lack compassion, to people that minimize how truly awesome she is. 

 

5.  There is more joy than I know what to do with.

 

Kids with special needs come wired differently.  They just do.  People are generally drawn to them.  There is a fascination.  They are unlike anyone you have every met.  Olivia is no exception.  That girl is pure sunshine and everything good in the world.  Everyone should know this kind of happy.  It's contagious.  And addicting. And it is this kind of joy that makes all the rest of a crappy stuff okay.  She teaches me a lot about happiness.  Mostly, and most importantly, that its okay to be happy just for the sake of being happy.

 

 

Being the parent of a child with special needs is complicated.  I'm glad people ask me hard questions, its good for me to think about these things.  Sometimes these situations are hard for people to grasp and understand.  I get that.  I so, totally get that.  But if you want to know what you can do for the parent of a sick child, special needs child, a child with autism, physical disability...Have compassion, teach your children to be kind to these kids and not be scared of them, and not just the kids who have more "obvious" differences.  Ask the parent how they are and if they dissolve into tears, let them.  Don't assume, don't compete, and don't compare.  Being a parent is hard.  ANY parent can appreciate that.  Let us all listen more, judge less, and love more.  It makes everything else so much easier for everyone.

 

Oh.  And let's all be happy just for the sake of being happy. 

 

 

 



Confessions: Part 2

*I totally wore jeans three days in a row this week.  I rewarded myself by wearing sweats all day today!

*My husband is confused when I tell him that by the end of the day I am done.  Like, done done.  He isn't totally sure what this means.  And I no longer have the strength to explain it to him.  Again.  But I love him anyway.

*I've been a little....closed and unpleasant? Yes, that. There has been a whole lot building up underneath for a long time.  People and situations who have been making me cringe over and over for a few years now have finally pushed me over the edge.  The result?  I'm cutting the fat.  Cutting it right out of my life.  Cause I just don't have the time or space in my brain to deal with them anymore.  And I don't like being that way.

*I don't do competitions.  In almost any capacity.  Don't ask me please.  It makes me extremely uncomfortable.

*I'm developing some definition in my thigh muscles and I'm pretty darn excited about it.

*I could really go for a good romantic comedy.  There hasn't been one of those in at least forever.  And I could really use a few hours alone, in a dark theater, with a bag of popcorn, and just zone out.  You know?  Just for a little bit.

*I miss my mom.  And my sisters.  A whole lot.

*Most aspects of our business right now are making me want to vomit.  Repeatedly.

Confessions: Part 1

*  I am still a hot mess.  You know, I've really tried.  I've really, really tried the last few weeks to get my crap together.  To put myself together, to get things in order, to make myself more presentable at all times.   But guess what?  Life, my kids, and everything else got in the way.  So.  I'm still in my yoga pants.  Right now.  And the last three days.

* Tonight two options presented themselves.  Folding laundry or painting my nails.  I chose painting my nails.  Naturally.

* I've had a bag of Carmel Apple Milky Ways in my car all week.  They are simultaneously the most disgusting and strangely delicious little things ever.  I don't know what to do about that.  So they are still in my car.  And I'm still eating them.

*One of my favorite things about Liv being in pre-school right now?  Built in nap time for me.  Its a habit that needs breaking, which I have every intention of doing once Cole is sleeping better.  And not teething. And I'm feeling better.  And maybe next week.  Or next month.

* My husband loves Grey's Anatomy as much as I do. 

* Cole's pediatrician picked him up at his well child visit yesterday and immediately declared, "Ohhh, you have a giant baby!"  I do.  I have a giant baby.  And I'm beginning to think giant babies are way more endearing. 

* I am a chronic over-sharer.  I'm convinced of it.  I speak too much, too open, and too often.  I think people need to be open and honest with each other.  But I think maybe I take it too far.  But I can't shut it off.

* I read the Wizard of Oz to Olivia and Cole.  She was smitten.  I then showed her the movie.  She fell in love.  I cannot tell you how much it pleases me that she loves old movies and musicals. 

* There has been a numerous events over the last few weeks that have affirmed to me that I absolutely, no question married the right person.  I am not perfect, neither is he.  But he is perfect for me.  Holy smokes, God knew what he was doing by putting him in my life. (I knew this a long time ago, but I'm just being reminded in a big way.)

* I have big plans for tomorrow.  I'm pretty sure maybe only a third of them will happen.  I'm also pretty sure I'm okay with it.