Fashion Doesn’t Take A Day Off …

So I was reading one of my new favorite fashion blogs, ONE little MOMMA, and I thought, “I NEED to be a fashion blogger!”  Seriously, she even writes on one of her pages that if people want to send her their stuff they can.  She, of course, will pre-approve whether or not she wants to write about it in her blog.  So people are basically sending her free stuff just in hopes that she will write about it to get their stuff advertised out there to the masses.  Wow.  So I have decided to stop writing about special needs and disability and start my fashion blogging.  Because #1: I know sooo much zilch about fashion, #2: What the world really needs is more fashion bloggers sarcasm, and #3: I really just want people to send me free stuff not sarcasm

Some time ago my husband was admiring my #OOTD.  That’s fashion world secret code for Outfit Of The Day.  He said, “Fashion doesn’t take a day off.”  But what he really meant was, “Will you be putting something else on before someone sees you?”  Because pretty much, I wear the same thing every day ~ Nike jogging shorts and some form of hand-me-down t-shirt that I may or may not have slept in.  In the winter I just add a sweatshirt, hand-me-down soccer pants and some UGG boots to that sweet ensemble.  Can’t you just envision the young fashionistas rushing to my website to check out my #OOTD?  All the young women of the next generation that I could be influencing!  Yeah, this right here may be the main reason God gave me boys.

One of the other awesome things I’ve found in the fashion blogging world is companies will throw fabulous blogger parties at their place of business just to get the bloggers to showcase their business. How do I get in on this?!!  I would gladly spend a long weekend at the StitchFix warehouse and get pampered by them only to come back home to tell all ten of you readers about how StitchFix did my hair, dressed me up, gave me delicious food to eat, toured the city, all while I slept in a hotel room by myself, taking a shower without interruption, without taking blood sugar all night, or getting puked on once! Sign me up!  I have heard of StitchFix in the past but recently it has become really appealing.  There was a time going to the mall and spending hours wandering from store to store searching for the perfect piece of clothing was my dream come true.  Now, I can’t think of anything worse.  Having someone else pick out a shirt for me, ship it to me and all I have to do is mindlessly put it on sounds pretty good about now.  If you’ve tuned into previous blogs you know that it’s been difficult to even get to Target. Whoops,I almost slipped into writing about special needs there for a moment.  I forgot.  I am now a fashion blogger!!  Here is me in my usual #OOTD.  Young girls, don’t all rush to get yourself an outfit just like mine.  Seriously, don’t.

Oh, and the #1 reason I will never be an actual fashion blogger: Selphies.  They make me feel like more of a moron than I already do on an everyday basis.  How do real fashion bloggers take so many pictures of themselves in the mirror and not feel like a blooming idiot?

Bible Verse I’m Loving Today:
Philippians 4:8

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.


Becoming Child-Like …

Having a child with special needs has meant coming to terms with the fact that we will always have a “child”.  Little by little we have had to make adjustments in our expectations.  You know, those things we Americans think our kids should be experiencing – team sports, youth groups, academic achievements … true friendships.  We even have to make adjustments in the expectations we have in our own lives – date night (What’s that? Oh, you mean without kids?), retirement (HA!), empty nest (We would be bored anyway).  We have made adjustments and are continually doing so, but the rest of the world, well, I think it’s still having trouble adjusting.

As our boy has become more of a man in age and size, I am learning that the world’s answer is to rid itself of those who are dependent.  I’m often asked where we will be “putting” Evan.  There are expectations from the rest of the world that just because our child has disabilities and just because he will be a certain age he will be pushed out of our home and into some sort of facility upon his birthday.  Some ‘Happy Birthday’, huh?  I know that everyone has a very different choice to make.  It’s different and extremely personal reasons for the path they need to choose for their child.  So I am not sure why there is an assumption that we will be choosing to move our son out upon a birthday or any sign of stress in our daily routine.  

Schools have no other choice but to automatically fast-track all children with disability into the one and only local special needs workplace, even though this may or may not be an appropriate place for the child.  (Thankfully, for some, there is at least this option.)  A doctor that didn’t personally know us gave us the option of putting him in a psychiatric hospital.  I wanted so badly to say, “What?!!!  Putting someone with disabilities in a psychiatric hospital is still a thing?!!!”.  Obviously, the world’s answer seems to be to rid themselves of the adult that behaves like a child.  An adult child that will always be in need of parenting is seen as a burden to the world.  

But what I am learning from my dependent son is so much better than what the world has to offer.  He is teaching me that becoming like a child is exactly what Christ has been asking of us all along.  

I’ve just started reading Paul Miller’s, A Praying Life.  In it he refers often to becoming child-like in our prayer life.  He also has an adult child with special needs and so far this book is really hitting me where I live.  I used to be so jealous of people who could pray eloquently in public settings.  I get nervous, fumble my words and am lucky to get a public prayer out of my mouth without breaking out in a sweat, my hands falling asleep or almost passing out.  But lately I find myself not being jealous of the wordy prayers but learning to pray in a more child-like manor like my Evan.  He is so honest in his prayers.  He prays for his friends, his brothers and family and his favorite things that are of little monetary value.  He almost never prays for himself or a physical need he may have.  Paul Miller says in his book that our prayer life reveals our heart.  Evan’s prayers reveal a heart for others and okay, … his ‘cards bags’.  But as for becoming child-like, Evan is already there.  He is honest like a child.  He is blunt like a child.  He is emotional like a child.  My prayers reveal a heart for mostly myself.  I am not always honest, with myself or God (like I can hide things from Him!), I am often too wordy (Um, blogging speaks to that, I think), and though not always successful, I work really hard to keep my emotions in check at ALL times.  As for me becoming child-like … I’ve got a ways to go.

So on my quest to becoming more child-like, why on Earth would I want to rid my home of the real-life example God has blessed me with in Evan?  Jesus says in Mark 10:14-15 that if we don’t receive the kingdom of God like a child then we shall not enter it.  It can be kindof a confusing Bible verse — unless you know Evan.

Bible Verse I’m Loving Today:
Mark 10:14-15
“Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.15Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”

Song I’m Loving Today:

Not Understood, Doesn’t Mean He Doesn’t Understand

Evan’s favorite thing in the world is to be with other people and to talk to other people.

 This can be really difficult for his anti-social, introvert mom.  But he drags literally drags me everywhere to talk to EVERYONE.  So one of the most frustrating things about special needs and disability in our house is communication.  Or rather the lack of intelligible communication.  For the most part we understand what our Evan is trying to communicate to us.  And if others spend any amount of time with him they soon will figure out his words as well.  He has about five subjects that he loves, MarioKart, ApplesToApples, his Cards Bags (Reusable Grocery Bags), a rotating selection of Pixar Movies, and asking what others are going to do today.  His questions are almost always the same and revolve around those things.  Every so often he has some new experiences that introduce new words and we really struggle with figuring out what he is saying.  We pray some desperate prayers to God to help us be better translators.  It is so heart-breaking to look in Evan’s eyes when we don’t understand.  He says a word so clearly in his mind and we just can’t get it.  What can hurt even more is when other people say things like, “I can’t understand a things he says”, all within ear-shot or even right in front of Evan. We don’t say this to those who speak a foreign language.  So why is it acceptable to say about someone with special needs? It hurts enough when he isn’t there.  But they don’t see the look in his eyes that I do.  

Just because he isn’t understood, doesn’t mean he doesn’t understand.

Another frustrating thing is illness.  Most moms can tell when something isn’t right with their kids.  But a special needs mom KNOWS immediately when something is off.  Let the anxiety begin!  We start with the questions.  We are masters of the Yes/No questions.  Is your blood sugar low?  Is your blood sugar high?  Do you feel shaky?  Does your head hurt on the top above your eyes?  Do your ears hurt on the inside?  Do you have a cold in your nose?  Do you have to breath with your mouth open?  Does your throat hurt?  No, not on the outside, on the inside where you swallow your food down?  Do you feel like you are going to puke?  Do you feel like you have to poop?  No, not normal poop.  Poop, like peeing out of your butt (coined by my eldest), running to the potty, poop?  Yes, these are the questions I have to ask.  Start at the top of the body and move down.  I usually get an honest answer.  Sometimes he even thinks he’s funny and will make fake puke noises.

Just because he isn’t understood, doesn’t mean he doesn’t understand.

I want so badly to understand my boy completely.  It hurts to not know how to best help him sometimes.  All of the “What Ifs” can be consuming for a special needs parent.  What if someone is hurting him?  I mean secretly, really hurting him.  What if someone is bullying him on a regular basis?  What if, What if, What if.  I do draw a little bit of comfort in knowing he mostly understands me when I ask him these basic questions.

Just because he isn’t understood, doesn’t mean he doesn’t understand.

I have to trust in God’s infinite wisdom during these times.  I don’t know why he doesn’t give us and others a complete understanding of my boy’s language when he so badly wants to communicate.  I don’t know why his health can be so precarious.  I don’t know why there has to be such evil that can take advantage of the weak.  Sometimes I just don’t understand why I can’t be allowed to completely understand him …

But I do know just because I don’t understand my Creator’s ways doesn’t mean he doesn’t understand me.

Bible Verse I’m Loving Today:
Isaiah 55:8-9

8For my thoughts are not your thoughts,
neither are your ways my ways, declares theLord.
9 For as the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Song I’m Loving Today:

Ellen Seidman wrote a great post about her struggles with society’s assumptions with her son’s speech challenges.  I’m not sure if I had it in my subconscious when I wrote this, but if I did I wanted to give her credit.  You can read her post here.