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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Tuesday, August 5, 2014

Thoughts about the last year

It has been a hard year. A good year. A really fun year. As I reflect on the fact that this time last year I was extremely pregnant and A WEEK overdue I cannot quite fathom how far we have come in a year.
This year I had two daughters learn to walk.
I watched as my big girl became a big sister.
I watched them both meet so many milestones.
And I've watch them become equals.
It is a bitter sweet journey to watch Shiloh so rapidly turn from baby to toddler. And to watch the mental gap between between the girls close.

It has been a hard year in our marriage. Adjusting from one to two has been harder that we both expected. Busy schedules, about a million life changes, and two girls to take care of. It has whipped our butts.  However- with all struggle and pain comes growth and strength.

We have learned to simplify. We have begun to keep a calendar so we can rest well.  We say no to things we can miss to make room for that which we cannot. We have learned to be strict in having rhythms of work and rest.
I go to work and joke with my managers that "I am an excellent nurse, but I only do the bare minimum when it comes to non-patient care (like I am not on committees, and I don't volunteer for anything extra) because truly- I am there just to make money for my family.
The days at home are long. But they are good. They are so good. Full of A big girl that is the most snuggly yet most whiney creature I have ever encountered. And her little sis- A spunky, dramatic, independent, joyful little one.

This year has been so different than I expected. I have been so incredibly challenged, and blessed by these children. And by my husband who has so patiently and consistently been an incredible support  to me and wonderful father to our girls.
It has been a year of growth for all four of us.

This life we live is so very messy. It is hard and way more real than I was prepared for. It is uncomfortable. And yet the joy and beauty that stems from those roots is immense. Incredible.

And I am thankful for it.



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Wednesday, July 23, 2014

The babies at the berry patch.

Summer. 
The time to make memories. 
To toss aside the routine and craziness the school schedule provides.
To embrace the calm. The open spaces. And the freedom. 
I truly had my heart set on taking the girls to the blueberry patch. I don't quite know why. 
I don't remember going to any type of fruit picking when I was little. 
And honestly I don't love blueberries. 
But it just seemed like a fun things to do. A fun memory to make. 
Luckily I had a girlfriend who was up for a last minute adventure. We spent the morning packing sippy cups, diaper wipes and lathering the babies up with sun screen. 
We loaded up in my van, listened to high voiced stories, and Emmaus' never ending plea's for "More Music" from the back seat. All while fitting in some much needed mommy conversation. 

The blueberry picking began. 
My girls probably ate as many as we bought. 


 Shiloh like to pick them, however her speciality was finding ones on the ground and eating them. 
I let her. Of course. 
Brushing the dirt off her face periodically.

 And Emmaus-  in her typical Emmaus fashion she sat in the middle of the row drinking her cup, enjoying her own company. Refused to pick any blueberries actually off the bushes (which was part of my thinking- that it would be an excellent fine motor activity for her).   She shoveled blueberries into her mouth by the fist full- until I took the bucket away. And then had a bit of a meltdown. So she rode on my back while we picked berries. (Side note- wearing Emmaus has saved my life. And pretty instantly calms her. Something about her sensory issues and being tightly held/worn by me. MAGIC)

We ended our trip with incredible thunder top blueberry muffins. Imagine still warm blueberry muffins with cinnamon on top. So yum.
 Blueberry faces all around. 

I think this was the first of many trips to the berry patch.


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Friday, July 11, 2014

And thats a wrap. First year of preschool is complete!

I do not claim to be an expert at raising a child with special needs. In fact, I fail. A lot.
I often find myself at a loss at how to help her. I do not possess supernatural patience. We probably watch too much "Daniel Tiger". And it is quite possible that I let her watch 4754839498 Adele Music videos and covers today- because she kept saying & signing "more music" and then said "Adele" when I asked her if she wanted Adele. (The girl is obsessed with Adele. Could be worse I suppose- but I am a bit sick of Adele)  -In case you missed it- that is two words people....in a row. Practically a sentence. Bam. My kid speaks.
So my point...  I am not a natural at this special needs parenting thing and I probably wouldn't have chosen this road if I had been given a choice. (I would have missed out majorly)
So I find myself in awe of people who chose to work with Special needs kids.
We had the opportunity to send Emmaus to an incredible developmental preschool this last year.
Full of people who chose to build their careers around children with special needs.
Teachers. Therapists. Administrators.
It is truly incredible and honestly blows my mind.
I was terrified to send Emmaus to school. Would they like her? Would they be kind to her? Would they make her feel safe and loved?
Every aspect of the school was incredible. Her therapies were in house. Her teacher & para amazing! She ever had the reception girl wrapped around her finger- they would visit and she would ring the bell.
I basically loved all of it- minus the price tag and the ridiculous drive during rush hour down town twice a day.
Yesterday was our last day. (she will receive preschool services in our school district starting in Aug)
I maybe cried a lot. Like ugly cried.
I cried in the morning when she refused to take a picture by herself. You know- I just wanted a good last day of school pic- and I even got mad when she threw a fit about it. FAIL.
I cried after I dropped her off, thinking of how much she has changed and all she has accomplished in the year.
First day of School Aug 2013 
(She wasn't even walking yet!!- And did her bangs seriously look like that?)
I cried when I picked her up, and when I read all the sweet things her teachers and therapists wrote about her.
BAH. And now I have to do this every single year for the next 15?
I hope we are always so lucky to have wonderful teachers and experiences.

 Emmaus with her wonderful teacher! They had such a great bond from the beginning! We are very lucky to have had such an incredible teacher for her first year!

Last day of school July 2014 
 No but seriously- this is more realistic to how the morning went. 
 The drama...



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