Saturday, August 30, 2014

I'm sorry, I didn't know"

"I'm sorry, I didn't know."

Today I headed to the grocery store. I took with me one envelope of grocery money, one non-verbal three year old, and a purse full of snacks and a cup of milk. I even had a list- which lets face it is the icing on the cake.
I quickly checked things off the list and to my surprise and delight Emmaus was amazingly well behaved. No whining, no throwing her snacks or pulling her hair,  just happy to be out with mama. As I rounded the produce corner an older, well dressed, fashionable woman - mid seventies I would say inquired how old Emmaus was. I smiled and said "she is three".  The woman in an overly sweet voice kinda clicked at me- and then said "well its about time to get her out of those diapers then, don't you think?"

My heart sunk to my feet, and it took everything I could do not to cry. It has been a hard few weeks around our house. The reality of having a special needs child, and the permanency of that reality has hit me like a ton of bricks. Lately it has taken all my strength to get myself up, care for my children, and not just melt into a puddle of tears all day long.  And so today, for me to wake up, do our September budget, get to the bank, make a grocery list and get to the store was quite an accomplishment.

I quickly smiled at the woman and replied "Oh, she is developmentally delayed, and has an uncontrolled seizure disorder, so she's just not there yet." To which she looked horrified and said "I'm sorry, I didn't know."

See- that's just it. None of us know.

We all walk around assuming that we know what is happening with other people. We form opinions, and convince ourselves we know best and that our opinions are truth. But we have no idea what is happening in other peoples lives, what their backstory is, or if they have had a bad day.
Yet we judge.
We judge the woman in front of us at the grocery store using WIC checks she pulls out of her designer purse.
We judge the grumpy man at subway who gets huffy with the lady making his sandwich.
We judge how people parent, how long they breastfeed, if they don't breastfeed. We judge if they spank, or if they don't. We judge what people feed their kids, or what they restrict their kids from. We judges peoples homes, and attitudes.
And yet- we don't truly know.

Just like the woman thought she could see the whole picture- a child who looked typical. Clearly was old enough to be potty trained, and was still in a diaper- so she assumed I just hadn't done it? Or was babying her?
But she couldn't see. She didn't know.
And I couldn't even be mad. Because I have been this woman. And while I haven't been bold enough to speak my opinions- I have sure thought them.

While the permanency of having a special needs child has hit me hard. The sight it has given me I am so thankful for. I am learning to fight my opinions. To give people the benefit of the doubt. And to spread love instead of judgement.
Because- I just don't know what people are up against. I don't know who is thriving and who is barely surviving. And so why not try to love those I encounter. To speak kindness, and give people the benefit of the doubt. That they are doing the very best they can.


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Tuesday, August 26, 2014

The Second Child Mom Guilt.

I never have really dealt with mom guilt before.
You know, the guilt of- I work outside our home, don't have my child set up for every activity, let my kid..., Didn't let my kid..., The guilt of what we think we should be providing, but aren't?
Yeah- I never have really dealt with that.
Until recently.
With my first child I had all the time in the world to focus on her. And with the addition of a second child- and my first child still requiring lots of attention, I suddenly am struck with mom guilt.
The baby book is pretty bare, the photos are less common. And this happens to everyone. I know, I know. But how do I explain to my second that she is just as loved as my first?
Sweet girl-
   There are about 80% less pictures of you than your sister. You wear hand me downs, and play with tupperware more than toys. None of your first foods were organic,  and you had tons of sweets before your first birthday. I didn't attend to your every cry, and you often even as a small baby had dirt under your fingernails (I mean how the heck did that get there anyway?). And the other day I smelled your sweet barely 1 year old feet and about fell over. That never would have happened with your sister.

The first moment you were laid on my chest I knew you. I knew you were mine. And because I had parented before, I knew what to do with you. You never felt clumsy within my arms. You immediately belonged to me. Your first smiles delighted me, and your giggles made my heart swoon. You were my second, but in no way were you less celebrated by me.
Yes, I failed at writing in your baby book.
Yes, I don't remember the dates of all or milestones or even what outfit you wore home from the birth center. (Sorry I was tired, I hadn't slept in two years)
But you are cherished. You are lovely. So please forgive me for the lack of photos, or lack of blog posts dedicated to you. I am learning to forgive myself and hope you will be gracious enough to forgive me too.
I refuse to be the mom spending my days feeling guilty about my short comings. Instead I will spend that energy chasing you around. Sculpting you into an acceptable little human, teaching you please and thank you, and pretending to be the queen of your princess castle. I will don a tutu for you and rule with my wooden spatula scepter. And in the end when your baby book is still sparse, and your have about 2.5 pictures of your youth- I hope you remember our adventures. And that you are confident in how incredibly spectacular my love is for you.



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One

Oh my sweet Shiloh-
    How you are already one I do not know. You my dear are a miracle. You are wonderful, you are funny, you are sweet and sassy.

We call you grandma baby and godzilla baby all in the same breath. You are a breeze of fresh air in our home. The way you learn, the ease in which you acquire new skills is refreshing. It is fun. You and I are a lot a like I have a feeling.


I love the sound you make when you eat. Always always always making a nomnomnom or ayah ayah ayah sound as you munch along. You are determined. Focused. And oh my do you have a temper.
Emmaus is your favorite. And when she is ignoring you or just oblivious to the world you sweetly stand next to her squat a little and crane your neck and head around to get your face in hers. And then you touch her face- or laugh in it. Which promptly starts a laughing fest between you two. I hope you always pursue Emmaus even when she is hard to connect with, because here is a secret for you- you are her favorite too.
At one year old you can sign milk, more, eat, and all done. You can wave hello and bye bye. You will go to anyone and really love touching people's noses. You can walk!! You look like a toddling tank, but you can walk. We are so proud of you and you are proud of yourself.
You love to dance, and you are obsessed with the doll house. And more specifically the baby and the dog. You understand how things work. I love watching you think, you figure things out super quickly and it amazes me.
You were completely unimpressed with your cake, and threw all the berries and frosting off your tray
Your name means peace & abundance and "oath of God".  You are those things to us. You are peace in the midst of our chaotic life. And you have made it abundantly full. Full of normal, full of tutu's and a love of baby dolls, full of giggling, and sleeping like a champ. You have made lonely empty spaces in our life full of light.
Baby Shi, I am so glad to be your mommy. And I can't wait to see the little girl you become in the next year.
I love you my dear.
Love, Mommy
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Thursday, August 21, 2014

Amnesia

When I get super stressed I have amnesia. I swear. Is this common? Anyone?

We haven't had bread all week. And yet there are so many things running through my head I can't remember to write it down. I look for bread, we are out and by the time I go to write it down I am on to something else and I forget that I needed to write it down. I hate being this overwhelmed because it turns my attention span to that of a gnat and I forget everything. Its out of control .
Today I actually wrote a to-do list with two things on it. And I only did one- cause I forgot to do the other. The reason the to-do list was so short was because I couldn't remember what I needed to do.... Seriously. Stress. Makes me go blank.
I was brushing my hair and stopped to do something else- and later went to put on make up just to realize I only had completed half my hair brushing task- I mean a 1 min task I can't complete because I am too distracted? Lord help me
I mean- my kids got fed, and I think I brushed their teeth? Maybe? I know I brushed mine while giving the LONGEST phone survey known to man about our last hospital admission.... I thought it was the neurologist calling or I wouldn't have answered- lets be honest. Oh- and I showered. that is a major WIN!

I have been researching. So many meds, so many options, so many decisions to be made. I never in all my wildest dreams thought being an adult, a parent would be so real. So hard. That the decisions we make daily would be so huge.

And I am forced to deal with the simple fact, that as of right now- nothing- NOTHING (on earth) will cure Emmaus.  Palliative- now that is a concept I despise. No cure, just treating symptoms of an illness. Praying for a breakthrough. A cure.

It has been a hard week. Lots of seizures. And a new school for Emmaus. I had no clue it would be so different from TLC and right now I am missing TLC something fierce. She immediately belonged there. And this- is different. It is big, and institutionalized, and impersonal.  I need to give it more time. I'm aware. Just right now- that in itself seems like a task.
Everything does.

Praying that tomorrow I wake up clear, and focused and ready to bust it because we are celebrating our baby Shi turning one this weekend. And I have done nothing. So sad really. I love parties, and planning. And first birthdays for fat babies.
I mean- I can't remember what I need to do- so the productivity is at a minimum.
I did work out more than once this week, and ate less candy than usual. So win, win?


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Monday, August 18, 2014

New School

And just like that... Summer is over. 


Today Emmaus started Pre-school in the  Shawnee Mission school district.
She did great! I on the other hand was a bit of a mess.
As I process through why I am finding very deep layers of nerves.
I went to a public school in kindergarden and first grade and had a pretty negative experience. So I am nervous she will not be treated kindly, and if she isn't treated well how will I know? She can't even tell me.
My best experience in school was at a christian school that echo'd the teachings I learned at home. Where it wasn't just about teaching the children, and standardized testing. But about growing a child's character, beliefs and core values.
I am also going through the typical parenting process of wanting to protect my child's innocence. And while yes, this is only pre-school I care so deeply about what she is being taught outside of our home. How she is spoken to, how the world reacts to her, and what she is learning.
Truly- it makes me up my game at home. Knowing that she is out in the world. Out of our home and less protected. Makes me want to be more patient, and more loving, more encouraging in our time together.
The onset of seizures again also give me an extra component of nerves. Again, not something I can control. But she feels more vulnerable now than two months ago.

Like I said I may have cried. However- except for a few nervous whines as she got on the bus- she was a champ. She calmed down once she got in her seat on the bus. She watched us out the window as the bus drove away and didn't cry. She was happy getting to her classroom and her teacher said she did well all morning.

The day was quick. Last year at TLC she went from 8-430. And this is 8:15-11. And she is right down the street instead of 30 minutes away- however it seems like so much of a bigger deal. Crazy.

I will leave you with my page of nerves and a ridiculously cute couple of pictures!


This is my very favorite.
Well- Happy School Year!
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Tuesday, August 12, 2014

Never give up

I am a disaster. I am emotional. I am sad. And I feel the hope we have clung to for the last two years falling through my hands like grains of sand.
I maybe just ran up the hill to my house faster than I have run since I was in high school. Booked it. Because I am angry. And sad and I was gonna make that hill pay for that anger.
Yeah- it didn't really help. And on top of my anger and sadness I wanted to vomit. FAIL.  But on the plus side my sis-in-law and I shaved a solid 4 minutes off our route tonight.

Tonight I am looking at my life and wondering how this can be it? Wondering why these hard things have happened to me. To my girl.
We went in for a video EEG due to some suspicious seizure activity from Emmaus. I thought we would have to stay the whole 3 nights to catch something. That we would leave saying a med adjustment would do. Or better yet- that perhaps she wasn't seizing at all.
Instead in less than 24 hours they had plenty of data. She had several seizures we had seen. And even more we had not. In fact the neurologist running the EEG said the tuber that initiated the seizures was firing (aka seizing) about every 5 minutes. Thus she is seizing almost continually. We don't see them that often obviously because it isn't spreading to other parts of her brain causing the staring/blinking/giggling we have been seeing. Yeah- thats only happening 6-8 times/ day.

I got my hopes up. In the season following surgery where she had zero seizures I got to hoping that seizure freedom would be her norm. I started to feel safe in the everyday.
The walking up the steps by herself. The sitting in the bathtub while I grab a towel. The playing in the living room while I cook in the kitchen. You know, things typical non-seizing 3 year olds have freedom to do.  I stopped telling everyone she has seizures. The longer we went without one the more safe I felt.
And while losing the hope we have clung to so fiercely really hurts. It is better than never hoping at all.
So tonight while I feel so defeated, tired and lost. I know this.
God is good.
Even when he lead his people into the wilderness He provided them with everything they needed to survive. And he eventually lead them to the promised land.
I believe the same is true for us.

Tonight I am very thankful for the community we live with. Because I truly feel too weak to walk. To think and to deal. And so I know the people that surround us will help carry the weight for a while. So we can grieve, regroup and stand back up.
And the peace of knowing that is amazing.


And this girl. She is fierce. She is strong. She is my hero. 
Slowly, gently, she is teaching me to never give up.
So I won't.



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Wednesday, August 6, 2014

A generous heart

Sometimes the most simple acts of generosity blow me away.

I long to be generous. Not a little generous. But- give up something I really love- because I know you would love it too- generous.
I think that part of the reason I am such a huge Dave Ramsey fanatic is because when you don't owe others money, your money is freely yours to generously give.

As a family we have been given so much.
I can't even begin to list (nor will I try for fear of forgetting something) the gifts we have been given. The generosity especially in times of need that we have been shown.
And the faithfulness not only from the Lord but from our community too.

Tonight we had a fundraiser at Chick-fil-a to raise funds for the TS walk.  And man did our community show up.  It was incredible to see friends old and new. Friends I met for the first time tonight- but that are friends none the less. People came from all over the KC area to support Emmaus.  To support us.

And while people gave donations even above their time and dinner prices the sweetest most generous gift of the night came from a little girl that had never even met Emmaus.

I am sure she knows a little about Emmaus- as this event was for her. But she wanted to give Emmaus a little disney princess doll. And we all know how precious anything princess is to a 3 year old girl.
Reflecting on this generous act- I find it a little interesting that the age group most typically considered a little selfish, not eager to share and somewhat self focused (a child) so honestly and easily gave a precious gift to another. In fact- it wasn't just another, but another child she had never met.

And then I think of myself- And wonder, how I can be more like this sweet girl?  How do I reach out and give good gifts to those around me? Not my seconds, or my left overs- but things I love.
As adults I believe we are far too focused on our comfort, on what we have earned or what is owed to us. On having the very best, on looking a certain way to those around us. And so we miss the point.

So this little princess?
 It speaks volumes to me. It takes me out of my comfort zone. It rearranges my heart and my attitude. And it challenges me to become more child-like in my generosity.













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