be brave

There are very few people in the world who are brave like this girl. She knows no guile. She gives her all to everyone around her. She faces the unfaceable—and smiles while doing so (sometimes).

My daughter has severe autism and epilepsy. These two factors make our life very different from many other people's. There are things we have to go through that are just extra special in very non-special ways at times. Her EEG testing that is happening this week is one of them. But before I talk about that, I want to tell you another story:

Over Christmas break, we went for a little trip to the hospital for dental work. This girl can't hold still properly for x-rays neither can she hold her mouth open well enough to get her teeth worked on normally, so we just head to the hospital every couple of years for them to take care of her. It's like a day spa for her mouth where they put her to sleep until they finish. Or something like that!

So we arrive at the hospital, get checked in, and I help her get into her hospital gown. Then we wait but not for long. After just a few minutes, the oral surgeon and his understudy (can't remember what they are actually called), along with two observing students from some university in California, all crowd into the tiny room with the large hospital bed that she's on, and we begin talking about what will happen. In the course of this discussion, they each get to know my daughter a little bit because she decides that they all need knuckles and high fives, and the resident (understudy, not sure) got a mini back rub on his shoulder that she could reach. All the while, she's acting like she's at a party as the one guy is putting in an IV, for crying out loud! But that's not the best part.

The best part is when she starts telling her knock-knock jokes. Her two knock-knock jokes. Over and over and over.

They didn't understand her the first time she said it, so I translated for her, and they all gave a courteous laugh. And then . . . she says her joke again . . . and again. She mixes in one other every so often, but she definitely has her favorite. So what happens next is hilarious. These four grown men begin to take turns telling knock-knock jokes because she assigns them turns saying, "You turn" and pointing. She makes certain she gets to tell her joke after each one, but the turn-taking goes viral. One guy turns out to be an avid knock-knock joke teller from his high school days. Another has his phone out doing searches to be able to one-up my daughter and these other guys. And you know, she won the contest. I know this for sure because when we all were laughing when the punchlines came around as we were walking down the hallway to the surgery room, one of them turns to me and says something to this affect, "You know what makes it so funny? She says it like she's telling the joke for the very first time every time. That makes the joke genuinely funny—every time."

Her delivery is on point every single time. And that's true across the board. That girl is so sweet and happy and wanting to help. When she's having a hard time, she's not, but everyone has their moments. But she is quick to recover.

After they wheel her through the surgery doors, I was consulting with the dentist, and some time later, one of the observing students came out to the waiting room to tell me that she was telling her knock-knock jokes until she could no longer speak from the anesthesia putting her to sleep. That girl!

So back to the EEG.

She does not like getting poked and prodded. And really, who does?  It took over an hour to mark her head and glue the electrodes to her scalp. This proved to be a real struggle for her since she had to stay awake for it. I bribed her with the promise of a treat, and then the tech got smart, and she bribed her with a future treat too. And after that, it wasn't totally smooth sailing, but this brave girl found courage, patience, or strength, whatever it was, to work through her autism struggles and make it possible to get the job done without us feeling like she's being tortured.

While she didn't get to telling her jokes, she did find her smile again before we left the hospital.

There are things we don't like going on around us and being thrown at us, but that shouldn't keep us down. I can't always find my smile, but today, she taught me that I need to work harder at that. I need to be brave and smile sooner than later.

P.S.

Here's her most favorite (most repeated) joke:
Her: Knock-knock.
Anyone who will reply: Who's there?
Her: Boo.
AWWR: Boo who?
Her: Dont' cry. It's just a joke.

dental appointment epiphany

Standing next to her holding her hand and watching her fight back tears as the dentist sticks her with one last shot, I think to myself she won't need me to hold her hand much longer. But in the very next moment, I realized that I'm wrong . . .

How many times did my mother hold my hand after I was "too big" or "too grown up" for that kind of stuff? Holding your hand looks like letting you fall down and get yourself back up and cheering you on when you make it. It happens when you get your first job and she buys all of your brothers' school clothes from your workplace while you are at work to show she supports what you're doing. She literally holds your hand to keep you from severely injuring yourself when you're high from getting your wisdom teeth surgically removed. It looks like being at your beck and call to move you back home the moment you realize it was a terrible idea to move out with your boyfriend. It happens by ignoring the very false rumors that you are having an assumed shotgun wedding just because you don't want to wait. Holding your hand is when she crochets an entire blanket out in the hall because you want her there but not actually in the room while you go through childbirth. She holds your hand by running your epileptic daughter through the doctor office doors because you couldn't get there in time to do it yourself; it is caring for your babies while you have to go to work. Holding your hand happens while waiting for the details on the autism diagnosis, supplying treats and meals when the days are long and trying. Keeping the truth about heart disease from you because she knows you aren't ready to face it yet. And leaving you to fly on your own because it is time . . .

All in that next moment, I realized how my sweet daughter was facing the worst thing in her life right then but that I have so much more to hold my children's hands through. So much more to face.

more to offer

Since my mother isn't around to show appreciation in person, I like to honor her by taking time to remember as well as further understand her beautiful life.

As I slow down to consider all that my mother gave me, I realize that her example of taking time for herself was invaluable. She took time to nourish her heart, mind, and soul. Reaching out to my father, family, and friends was something I witnessed her doing continually. She would give gifts, write letters, make phone calls, organize family parties, take people in, sew, sing, and play her piano. My mother gave to all around her, and in her giving she received what she needed. She needed to see how she was making a difference in life and to feel loved in return. I know this thing about my mother because I feel the same needs. I do some of the same things without even thinking or trying. It is as if those habits and talents are embedded in me, and my heart swells in gratitude to her for being the gardener of such goodness. I have long understood that I owe her so much.

What I didn't realize was how all that she did made her a happier and, therefore, better mother. I wonder if she felt driven to do what she did in order to have more to give—or if she did it without conscious purpose. Either way, she made life good for us despite her faults and failings. She seemed to always know what to say or do to make life better even under the harshest of circumstances. She genuinely made life better for everyone around her.

To apply these thoughts to my own life, I ponder what more I might do to consciously nourish my heart, mind, and soul so as to have more to offer as a mother. I need to reach out in purposeful ways that induce happiness, that cultivate joyfulness, that create a sense of fulfillment, so I will be glad to give more than seems possible on some days. Truth be told, some days ask too much. Some days I don't know how I will make it. And on some days my heart is so broken because I can't see far enough ahead of me to know if I'm on the right track.

My goal this year to become more joyful has included cultivating friendships and love and making memories, and so far so good. In taking time to honor my mother, I can see with better understanding how a more joyful me helps me become a better mother. My heart is full of love for her and for all that I am because of her example.



Years gone by:

Mother's Day 2014
Thoughts on grief

Mother's Day 2013
A silly poem I wrote for my mother while she was alive

Mother's Day 2012
My children and I escaped to a hotel for Mother's Day weekend, and I wrote this poem after seeing them all contented and asleep.

Mother's Day 2011
A poem honoring my mother

SOLSC 2014: Leaving the Light On

Tonight, I realized something. My little guy doesn't need the hallway light on anymore.

Since the separation and divorce, he became anxious about having the lights off before falling asleep at nighttime, so for awhile (many months) I'd let him keep the bedroom light on until he was sleeping. Slowly, I negotiated less and less time with it on, switching to allowing the hall light to be left on until he was asleep instead. It has become routine for me to read to him, say prayers with him, then turn his light off and switch on the hall light if it wasn't on already. But tonight, I felt so tired. I've been working as hard as I can to do well at school, home, and trying to establish some semblance of a social life. Emotions have been running high, too, which is exhausting for me.

So, I flicked the switch off and headed upstairs without turning on the hall light, got to the top of the stairs and realized that I forgot to turn the light on but he didn't cry out. I felt so happy and proud of my tiny guy right at that moment, yet the very next moment brought a tinge of melancholy because time is going by so quickly. Before I know it, all of my children will be grown.

I can see myself as an old woman leaving on the hall light from time to time just to remember the days when my children were small. 

SOLSC 2014: Fifth Grade

I honestly thought I'd never have to do another fifth grade report ever again after I made sure to do an extra good job on my science fair project back in the day. Alas, I relived the good old days yesterday as I assisted my sweet girl with her fifth grade biography project. 

One thing to consider is that I don't believe in assisting in any major ways with school projects, so her emotionality must have really got to me. She did do all of the research herself and even did all of the writing until I got my hands on it since she was freaking out. My editor eyes just could not resist the polishing that I love so much. I think she might have been offended a bit at first because I kept adding a word here and there and deleting a word there and here. But then, she could see how her mom was making something great into something brilliant, and my mini-me decided that she could calm down and let me help her a little bit. 

Taking that time to help her made it to where half of my own homework was late and the other half was less than intelligent. But I wouldn't change anything about it. My sweet girl knows I love her because I gave her the gift of time. 

SOLSC 2014: Sick and Tired

My sweetie girl who has autism is sick. With my other children getting ill is not that big of a deal, but with her it is. She can't express how she is feeling, so a great deal of direct supervision is necessary to make sure she doesn't have a seizure, keeps on breathing, and gets better. Before now I haven't really thought about all that I have to do to take care of her when she's unwell. And the only reason I even started thinking about it is because I've been exhausted physically and mentally over the past several days. The majority of my day was spent caring for her and nodding off whenever she was resting. It reminded me of how people tell young mothers to sleep when the baby sleeps. Well, I 'm here to attest that it is good advice even when your baby is seventeen years old. I'd be totally psycho tired right now if I hadn't taken those couple of cat naps.

It's funny how we just do what is required of us and don't think about the details until there are adverse effects. I am so grateful for this girl and all the light and learning she provides that it never seems like work to help her. However, my yawning and inability to focus on anything when I do have a chance to think is proof that there is a toll being taken.

Hopefully tomorrow we will see a turning point and she will be well again! 

how to love

14.

I learned how to love from them
They loved with fierce loyalty
Loving everyone, but never caring too much
Life was their business
Knowing when to make it theirs and when not
With all their faults
They knew how to love
And love is essential for life

Learning to love from such masters
Has not been an easy task
They taught by example
With very few words
Forced to read between their lines
And have loss teach the last measure
That they loved everyone
And it was enough

A Social Experiment

The other day, I was perusing Facebook and liked a bunch of awesome statuses from my friends--stuff like running marathons, singing national anthems for baseball games, their children winning trophies, and other accomplishments. I have been pondering lately on how we simply do not have any super amazing stuff going on in my immediate family, and this got my mind going again. I can't afford to put anyone in dance or gymnastics or soccer or baseball. (And, to be honest, I don't really want our life's schedule being dictated by the all-powerful Game/Competition Scheduler.) After doing an indoor cycling class, I had thought it would be a healthy fun thing to get into cycling as a family. Then, I saw how much the bikes cost. I can't do that either. Also, I simply don't have the support necessary to do more than what we already have going on. (Divorce and college are my hobbies.)

So, I began to go down the list of things we are doing individually and as a family and concluded that we aren't over-the-top excelling at much of anything.  Well, until my daughter started up some negativity about her grades. She said to me that everyone in her class got straight A's except for her, and so she is a poor student. No way was I going to let her think that! I told her that B's are good grades too; Straight A's are nice and it feels great to get them, but A's and B's are something to be proud of.

This brings me back to Facebook and feeling my mediocrity. If I'm going to tell my daughter that A's and B's are awesome, I need to take my own advice. Hypocrisy is not acceptable. So, I decided to write a snapshot of our day and see if people would appreciate our version of fabulous. This is what I wrote:

Shameless Brag Update: My 16-year-old with Autism totally went down the slide at the park about five times, and said, "TagYouIt" to her siblings. My 13-year-old is still alive after forgetting who he was talking to when he blurted out, "Be quiet.". My 9-year-old got A's and B's on her report card. My 7-year-old is really cute and quiet.

My friends did not disappoint. I have 27 likes and counting as well as the best comments telling me how I'm a good mom for seeing the little things, they couldn't do it without me, and one friend who understands what TagYouIt means did a metaphorical cartwheel in celebration of our "accomplishments". 

This social experiment proves to me that it's all about perspective. I could have said all of those things with bitterness and sarcasm. I could have friends who look at it and think What a weirdo. (Actually, I think they already do that, but it's not because of my family being lame or lesser than.) If I want to feel like what I'm doing is important--no matter what it may be--I only need recognize it as important and worthwhile.

After all, I have found something we are doing smashingly. We are excelling at living, and that's quite an accomplishment.

 

Source: twowritingteachers.files.wordpress.com via The Purple on Pinterest

fish are friends

photo by C.

I'd like to introduce all y'all to the newest additions to our family. The fish to the left is Tiger Stripe (Tiger for short); Juicy Licious (Juicy) is the orange and white one; And the snail up in the top right corner is Flash Gordon (Flash). 

If you couldn't tell, I am the one responsible for giving them proper last names.

These little guys were not expensive, nor are they extravagant sorts of creatures; however, the measure of joy they have brought into our home has been priceless. We all just needed something fun and different, and this mom [pats back] saw our old fish bowl in the craft room and decided to fill it with friends. When I told the children about my idea, you would have thought I offered them a vacation to Disneyland or something. The trip to the pet store was Giddy Excitement personified. Coming up with their names was an afternoon of fun, and ever since, feeding, watching, and talking about our new aquatic friends has been one of the happiest distractions we've had in months. 

Now, let's all hope they don't die... 

Source: twowritingteachers.wordpress.com via The Purple on Pinterest

Thirty Days of Gratitude: My Children

Every mother I have ever met or can even dream of loves her children. We wish for every good thing for them. They drive us bonkers on a weekly, if not daily, basis. We see them for who they can become. They love us back in such uniquely touching ways.

All of this said, I am moved as I think of the road my children and I have had to travel the past several years. It has been sad, confusing, strengthening, and heartening--a hot mess of love and tears. Yet, they keep going. They keep on looking to me for love, answers, support. They keep me going. My heart is burgeoning with adoration, respect, and awe as I am merely scratching the surface of recognizing their worth as individuals. I do not know where I would be at this moment if I didn't have them.

I dedicate Home by Phillip Phillips to my precious children.



It is a great privilege to be their mother, and I hope they will always know where to find home.

For more information on how to participate in Thirty Days of Gratitude, click here.

Heartbreak Hotel: Lunchroom Edition

I was volunteering at the high school yesterday for my teaching stuff and got to walk in on the last of lunch time with my daughter who has Autism. She was sitting alone. Most of her life skills classmates were standing along a nearby wall hanging out and talking, but she wasn't. She was just sitting there--alone--people-watching. Part of this situation can be attributed to the fact that she doesn't know how to insert herself into conversations/groups. She always waits for an invitation. The other part is something I just don't know how to discuss without stepping on people's feelings; however, her solitary existence struck my heart as I approached the table, and I must say something.  

I was unprepared for the deluge of emotion that overcame me. Questions and tears. Disappointment. Wishing for so much more for this precious child of mine. I don't understand why no one would want to sit with her. She is sweet and kind. To be more specific, she truly knows no guile--only purely honest simplicity of heart and being.  She can't talk much but if you just sit by her she'll tell you how pretty or cool your shirt is, give you a mini back rub, and work so hard to say something--anything. Why wouldn't someone who knows her from classes or church think to befriend her? Why wouldn't those individuals have an empathetic response? Would they like being alone at lunch time?

I think it begins at home. Why don't more people talk to their children about inclusion of those with disabilities? Do they not see my daughter and others like her as children of God too? Why is it so difficult when it really could be simple? She is simple. She doesn't ask for anything whatsoever. All that would be required is whatever they would give.

A lot of what I have heard is that people feel uncomfortable because they don't know what to say to someone who can't respond typically or that they are afraid of the autistic behaviors--such as personal space boundaries, etc. Let's be honest: sometimes it is awkward; sometimes it is weird. But who cares? EVERYONE has done awkward, strange things within their lifetime. It's just all piled together for years on end with Autism. All that really needs to happen is for people to recognize a disabled person's humanity and compassion and empathy would come. I just know it.

And you know what else? It really doesn't take that much effort to bring your group of friends over to sit with someone who doesn't comprehend much of what you're saying, laughs at all your jokes (even if they aren't very funny), and, to top it all off, you never have any risk of them gossiping about you behind your back because she doesn't know how. I would say that's a steal of a friend. A real bargain. A treasure beyond price.

This mother's heart cannot comprehend this at all.

related link:

Wanted: Awareness, Respect, Acceptance

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If I had super powers...

Being the Purple Whisperer is another one of my specialties.

Well, I have often said that I do have super powers. I don't mean the ones no one can ever really have, but the ones that count--

I can find almost anything.
Lose a shoe, sock, pretty much anything that needs both parts of a pair to be useable, and I can find it.

Need some strange, random item for a school project?
If I don't have it, I have the improvisational skills of a magician.

I also get these intuitive prompts to make or buy just the right dinner or treat-- making all the difference in a hectic, stressful or sad day.

If you don't believe that these are super powers, all you need do is ask my children because they call me Supermom. all the time.

candy machines

What Grown Ups See

Sometimes I wonder why it's so easy to say no when quarters are begged from me for candy machines. Then, I took these photographs and it makes a little more sense to me now.

Looking down, I see all the candy and how teeth will rot and how much dental work costs.

But looking from the child's perspective, I can see how unattainable this bit of candy might seem. Most of what they see is metal and a big label with big red numbers on it that might as well say Mom will probably say no, but ask anyway.

With this paradigm shift, I might need to reevaluate my response. Who wants to be such a downer?

What Kids See

Just Talk About It

The first thought that comes to me when recalling my abuse:

I would not have been abused for as many years if I would have known that the blackmailing jerk really had nothing on me because my mom really did want to protect me and I was not the one doing bad things to people.

I encourage all parents and caregivers to talk about how to be safe from abusers with the children you love and protect. Talk to them about what they should do if anyone ever tries to or does hurt them. And be sure to spell out that it doesn't matter who it is because sometimes it is a family member or trusted friend that does the abusing. As a matter of fact, I believe abusers typically fit that description. Not always, but enough to make me shudder at the thought.

A PUBLIC SERVICE ANNOUNCEMENT brought to you with love and hope for a good society by me, The Purple Lady.

Honesty and the Forgotten Tradition

Monkey #2 came to me and said, Mom, we forgot to go caroling this year. I looked at him and, for a moment, wished I could let him believe that statement.

I have taken my children caroling during every Christmas season for around twelve years now. I took them by myself most of that time. I took them when it was freezing outside. We went even if everyone promised they hated singing. We went even though I knew I would be singing a solo with a few back up singers in sections. We went because I know how much fun it is to feel the Holy Spirit as you sing praises on someone's doorstep and how it brings everyone the gift of music during Christmas time. You don't need money to go caroling, just a faithful heart and the courage to sing.

But, life as I know it has been crumbling around me for a very long time. I have had to learn survival tactics, such as recognizing when you just shouldn't do something--no matter how fun or fabulous it might have been--because you will be frazzled the whole time and then, it isn't really fun or fabulous anyway. So it is just better to cut your losses. That seems to be my new theme for life: Cut your losses and Keep your sanity.

The Santa Conspiracy

At my house growing up, Santa Claus always wrapped our gifts in the most beautiful paper--different from the rest; with the largest, most shiny bows on top; and the tags were always written in the most perfect handwriting possible. He (she, my mother) stuffed the stockings with treats, gadgets, and thoughtful little gifts. And Santa ALWAYS left a 2 lb. box of Nuts 'n' Chews from See's Candies, my mom and dad's favorite kind. I think that is why I prefer the soft centers--I got burned out on all that chewy stuff!

The sad part about all this lovely preparation is that my Santa bubble was burst, on purpose, when I was around five years old. I do not like to (nor ever really do) talk about these two people, but without some explanation you will not understand--

I had two older half siblings who found joy in torturing and abusing me. This year, that Santa's origin was revealed to me, is the first memory of their abuses that has been seared upon my heart.  If I think too hard on it, I can still feel the wound. It's probably because it opens up the door for recollection of all the more heinous crimes. Although, stealing the magic of a child's Christmas is quite the crime...

My Journey With Autism

My Journey With Autism...Thus Far

after the diagnosis
against all expectations
within a few years I inched
toward comprehension of this unknown thing
by means of reading and studying anything I can get my hands on
except I cry sometimes
along with celebrating the milestones
in spite of those milestones not being in "proper" order
into high school she goes
out of my protective sight
beyond my control
around kind people most of the time
unlike anything she has done before
amid doubts on my part
for all children like her
onto the bus she goes
instead of having her stay home
since I know it will help her-- and bless everyone who sees her

Commentary on Beauty

The other day, a friend's little girl spouted off 

everyone likes me huh, mommy, 'cause I'm beautiful

She was so adorable saying this. I am sure many of you out there have heard something similar from little girls in your life and you women have thought it of yourself possibly.

The Importance of Examples

Oftimes I wonder about what sort of example I am setting for my children. I wonder about what example I show my friends and colleagues. I wonder what example I displayed as a youth in junior high and high school for my siblings and friends to behold.

Kid Dates

I was thinking to myself that I haven't really shared any ideas for parenting in awhile and it might help me to remember how to get back into my groove to discuss stuff that really works for my family.  I usually get some of the best ideas (practical and successful) from other people, too. So, instead of taking ideas today, I will be "other people" and contribute. Hopefully someone will find it as useful for their family as I have done.

One thing that makes a difference in my children's lives is special, set aside one-on-one time. We call them Mom Dates, but I choose to call them kid dates here in order to encourage the fathers out there to make those one-on-one opportunities happen as well. Your children will love you even more for it!