Thursday, December 15, 2016

Better Off Dead

Julia's favorite album right now is Tom T. Hall's Songs of Fox Hollow.


She walks around the house holding her iPad up to her ear like a boom box, using her nose to navigate between songs like "Sneaky Snake," "How to Talk to a Little Baby Bird," and "I Wish I Had a Million Friends." It's a super cute album, very catchy - but she's been listening to it so much lately it's almost become white noise to my ears.

EXCEPT for one certain little song. "The Song of the One-Legged Chicken..."

It goes like this:

A one, two, three, one, ready play~

Do you like true stories? I do
That's why I'm singing this song
The song about the one-legged chicken, 
who lives in the straw on the floor in my barn

I remember the day she was hatched out
The vet came to see her and said, 
"That chick has just one leg, she'll never grow up. 
I think that she would be better off dead."

I said "No! Let's just let her keep growing, 
we'll just wait and see how she gets."

Before very long she was hopping 
and pecking and chasing the bugs with the rest

Now she is a beautiful chicken, 
though she has only one leg
When I go to see her each morning, 
she hops from the nest and she lays me an egg

And she cackles - booook, bok, bok, bok

Do you like true stories? Well I do, 
that's why I've sung you this song
The song about the one legged chicken 
who lives on the floor in my barn


And suddenly the white noise clears and I am hearing a true story. Not the one he is telling - about the sweet little chicken - but a different true story about a different little chick I happen to know. 

It's the song of my sweet, little Julia... 


Do you like true stories? I do
That's why I'm writing this song
The song about my sweet, little Julia,
who shows us every day that different's not wrong

I remember the day of her ultrasound
The doctor looked inside her head,
"You may want to consider aborting."
(He might as well've said "She'd be better off dead.") 

We said "NO, let's just let her keep going
We'll just wait and see how she gets."

Before very long she was breathing,
and growing, and learning along with the rest  (of us)

Now she is a perfect, sweet daughter, 
although she is not like the rest.
When I go to wake her each morning, 
she gives me a smile and I know I am blessed. 

And she giggles. Heee! He! He, he!

Do you like true stories? Well I do
That's why I wrote you this song
The song about my sweet, little Julia,
who shows us that different's not wrong


Julia Anne 9 months




Julia Anne 9 years







Wednesday, June 22, 2016

I Remember Nine

Today Julia turns nine.

Every birthday brings about its own unique set of emotions - this year I find myself as reflective as always, but not just on Julia's life, on my own.
Because I remember nine.
And not just fragmented, isolated, snap shot memories of nine. I REMEMBER nine.

I remember starting third grade at a new school.
I remember being the new girl.
I remember feeling lonely.
I remember adoring my third grade teacher, Mrs. M, and hoping she would like me back.

I remember being boy crazy,
I remember being mean to the kid in my class whom I thought was weird.
I remember loving horses.

I remember walking through the hallway one day thinking "I wish I could walk like a horse."
So then I tried.
And one of my classmates who was not yet my friend, tattled on me to the teacher I adored:
"Mrs. M!!!! Laurie is walking weird!!!!!"
I remember glaring at her thinking, "You don't get it, I just want to walk like a horse."

I remember finally making a friend.
And I remember the relief of finally making a friend.
My new friend introduced me to her best friend.
And my new friend's best friend loved horses just like me.
So they added me to their pair.
And I knew I was the third wheel but I didn't even mind, because now I belonged somewhere.
And I remember how good belonging felt.

And at recess when everyone else played on the playground, we went to the very back corner of the school's property and played horses.  Our little corner was the stable and we had to take care of our horses and ride them and make food for them - which we did. Horses love mud pies in case you didn't know.

And then one Sunday afternoon I remember my mom asked me to take a walk with her. And we sat down on a bench and took our shoes off, which I thought was kind of fun.
And my mom told me that sometimes really sad things happen.
And that my friend's best friend who was now my friend, who loved horses as much as I did, had fallen off her horse...

And I remember my first funeral.
I remember waving to the boy I had a crush on as we walked down the center aisle of the church to find a seat.
And my mom told me not to wave at boys during a funeral.

And when everyone started walking up to the front, I remember my mom saying "Sometimes it's better not to look," but I wanted to look.
And then I remember thinking my mom was right.
Her face was too pale and I couldn't see her freckles.

The next week at school, I remember her big sister came into our classroom to clean out her cubby.
I remember no one said anything to her.
And I thought we should say something to her.
But no one said anything.

And weeks later at my horseback riding lesson, I remember being told I would be riding the horse today.
Her horse. The one from...
I remember being terrified and then feeling ashamed for being terrified and then telling myself I should try to be brave.  And so I tried.  But my lesson ended early that day. And my parents weren't even upset. They said it was okay to end early. They said I didn't have to ride that horse again.

And I remember I didn't ride any horses again for a long, long time.

I remember making more friends, some that would last the rest of my life.
I remember having more crushes.
I remember slumber parties and best friend necklaces and favorite books and hurt feelings and continuing to be mean to the kid I thought was weird.

And I remember thinking about her...
The girl we lost when we were nine, who decades later came back to us as a hurricane...
My new friend's best friend who loved horses just like me.

I'll always remember nine.






Tuesday, May 10, 2016

Outlier: The Data Point I'd Like Thrown Out

Next month, Julia turns nine.   

And besides being an accurate measurement of the amount of time Julia has been breathing oxygen on this planet, what it means for Julia to turn nine and what it means for a typically developing child to turn nine have absolutely nothing else in common.

Julia Anne, 8 years 11 months

I don't even know what it means for the majority of the world to be nine.
I had to look it up. 

And according to webmd, here are some things to know about typically developing nine year old humans:
  • They grow about 2.5 in. and gain about 7 lb in a year.
  • They can read and understand longer sentences up to 12 words.
  • They can add and subtract 2-digit numbers, understand fractions, and are learning how to borrow and carry values.
  • They like organization and planning, such as making plans ahead of time with friends.
  • They think independently. Most children are improving their decision-making skills.
  • They can accomplish increasingly more complex tasks and projects in school, such as book reports.
  • They recognize basic social norms and appropriate behavior.
  • They can control their anger most of the time.
  • They have caring, solid friendships.
  • They have overcome most fears that were common in earlier childhood. But they often start having more anxiety from common stressful situations, such as school performance.
  • They are curious about relationships between boys and girls. Few will admit to this interest-most will insist that they are horrified by the opposite sex.
That is quite an impressive list! Go typical nine year old's!

But it struck me as I read through this list several times that the least helpful and most misleading way I could describe Julia to someone who didn't already know her would be to start by saying she is nine years old. I would have to walk back and correct every single thing that person would be assuming about Julia based on their knowledge of a typical nine year old.

And this isn't new for us. This didn't just happen with turning 9.  Turning 8 was the same way - so was 7, 6, 5, 4, 3, 2 and 1. In fact, it was at Julia's six month check-up after answering "NO" to every single item on the developmental survey that I realized Julia 's path had already begun to diverge from her same age peers.  

I never did fill out another one of those surveys. If I was answering "no" at six months, what would I be answering at nine years?  "No x 10,000?" 

The older Julia gets the larger the divergence and therefore the less meaningful chronological age is to us. Honestly it means nothing. It is an outlier, it is irrelevant to understanding her, and I for one would vote for it to be thrown out.  

Let me be clear, I do not sit around thinking about this in my spare time. I do not care how Julia measures up to other nine year old kids. I do not care how she measures up to other two year old kids. I love her exactly the way she is -  so I don't like thinking about these age comparison issues because it forces me to measure her by what she isn't doing and that has never been our approach to parenting her.

 No, this isn't a topic I want to be thinking about. It only comes up when programs we have her participating in tell us something has to change because of her age. Just age. Nothing else. Period. That's when it becomes an issue I have to think about. That's when I suddenly have to look at my child and compare her to other 9 year old's. It's not a comparison I want to make. I want to talk about what she can do, what she is doing, where she is developing and thriving. Trust me,  I do not want to be spending my time building a case for why programs need to make an exception for Julia based on age.

But this is where we are. Again.

Every June, regardless of what else is going on with her - other people tell us her age is the thing that matters to them - and therefore a change must occur.  I get that for typically developing kids this might work - because chronological age accurately represents an entire data set of similarities these children share. But that's not the case for Julia - choosing to categorize her based on age not only seems irrelevant, it seems random, because none of her other data points match being nine. 

So if we are going to make a decision based on one singular data point (which is not how data is used effectively, but whatever...) - why not look at all of the data points we have to choose from for Julia? 

Here you go, here is 9 year old Julia in data points:

Size:
  • Julia is the weight of an average six year old (thank you cannabis oil for that).
  • Julia is the height of an average five year old.
  • Julia has the head circumference of an average 14 month old.
At her most recent neuropsych evaluation,
  • Julia's gross motor was that of an average 14 month old.
  • Julia's fine motor was that of an 5 month old.
  • Julia's receptive language was that of an average 9 month old.
  • Julia's expressive language was that of an average 3 month old.
  • Julia's overall cognitive level was that of an average 6 month old.
  • Julia's broad independence level was that of an average 11 month old.
Diagnostically
  • Julia has a chromosome abnormality.
  • Julia has epilepsy.
  • Julia is legally blind. 
  • Julia has global developmental delays.

So where does Julia belong? 
I have no idea. Clearly these data points are all over the charts. 

But the one thing I DO know is that I would never pick just one of these data points on the list to make a decision about her. 

Determining where a child like Julia belongs requires thoughtfulness and consideration that goes far beyond all of the data points we have available to us, let alone just one. 

We have to consider what Julia CAN do beyond what a battery of tests says about her.  Where would she have the most likely chance of fitting in given her unique way of interacting? Where will she be safe? What is best for Julia?

No single data point can answer those questions  and honestly, no amount of data can capture who someone really is.

I have to confess this is one of the most frustrating things I have experienced as the mom to a child with special needs - this tethering to a data point that is meaningless to us. The structuring of programs around chronological age which is irrelevant in our world. I know that's how the typical world functions - but Julia isn't typical. These structures were created based on what typical kids are doing at a certain age - she isn't a typical kid. She isn't doing what they are doing and yet, that age category is what people running programs use to tell us where she belongs. 

Nothing makes me feel more misunderstood than this issue - especially when it happens with staff in a "special needs" program.

Right now in our home state of Colorado, there are programs Julia would greatly benefit from based on where she is developmentally, but she cannot attend these programs because she is too old.  When she was the "right" age for these programs she could not benefit from them because of where she was developmentally. How is this a helpful way to structure special needs programs?

 How is it helpful to set up programs for kids with special needs and then hold them to a categorization that doesn't take in to account their special needs?  How is it helpful to set up a program for kids with special needs and then tell their parents "We can't make exceptions for you?" Isn't the whole program an exception? Our whole life with Julia is an exception. Please show me one area in which exceptions aren't the norm for us. Isn't the purpose of a program for kids with special needs to help us with those exceptions? To think outside the box with us about what might be best for our child given how different she is from her same age peers? 

Instead of helping us think and work outside of the box, it often feels like more boxes are just piling up inside the original box.


And yet, my child is a freaking starburst. She doesn't fit inside a box.



She is fantastically complicated (that's not bragging, that the definition of a child with special needs). She requires flexibility and creativity and resources. If you don't want to give her those things fine, we will do it on our own - just don't claim to be a program that is meant for her then. You are essentially a typical program following typical rules, leaving us in the same place we would be in without you. 

And to anyone who might be formulating a response to me suggesting I am selling Julia short by pointing out how she isn't like a nine year old, let me stop you right there. I am the last person to sell Julia short - I am in awe of this child and what she can do. My singular focus as her mom is to give her the best life possible to continue to grow into the person God made her to be. Which means I have to be realistic about what she can and cannot do right now. 

What IS selling her short is making determinations about her based on one piece of data. 

It is selling her short to think she is so simple and unaware as to not be impacted by being placed with kids whom she has nothing in common with. It is selling her short to dismiss the benefits to her that can come from making exceptions for her. That, my friends, is selling her short. And it is selling us as her parents short as well.  We will not be talked out of doing what we feel is best for our child. ever.

Okay, I think I am done.

If you  made it to the end of this rant - thank you. If you are a fellow special needs parent who feels the same way I do, my heart goes out to you, you are not alone. If you are fellow special needs parent who doesn't feel the same way as I do, that is great! I'm happy this is one issue you aren't dealing with - our journeys definitely aren't all the same.  If you are a provider working with kids with special needs and you took the time to think about what I wrote, thank you so much! It means a lot to have my perspective as a parent considered (even if you don't agree with it) rather than dismissed or instantly argued with. 

Bottom line, in my experience with Julia, age is neither a helpful nor accurate way to categorize, segregate, or make decisions about her. 

I believe we can do more good for all kids IF we are willing to see them as more than data points.







Wednesday, April 13, 2016

Can We Talk About the Swing

A couple of weeks ago Jules and I drove to our favorite park.  We have to drive a little farther for this particular park, we pass closer parks on our way, but we go to this one because of the Swing. This park has an adaptive swing Julia loves, so the extra minutes to get there are more than worth it.

As we were parking on this particular visit, I noticed someone was in the Swing, which is somewhat rare. I was excited to see it was being used! We approached and saw a little girl maybe 4 years old in the Swing being pushed by her 19 or 20 year old nanny. The little girl was having a great time, laughing and smiling. And why not? The Swing is super fun - not just for kids with special needs, it's a fun swing for all kids!

When the nanny saw us walk up she instantly stopped pushing the girl and told her she needed to get off the Swing. The little girl was in tears.

"No, no, no," I said to the nanny. "She can keep swinging, we can wait our turn!"

The nanny looked hesitant, like maybe she should not accept my offer, but I reassured her we could wait, so she said to the little girl "You get two more minutes then we need to share."

At this point I am thrilled. This is what kids do on the playground right? They take turns. They share. They learn to wait. Such great stuff for Jules to experience!

Two minutes passed and the little girl finished her turn swinging. We thanked her for sharing with us then she ran off to play elsewhere. I put Jules in the swing and she proceeded to crack herself up each time I gave her a big push, her laugh echoing across the playground. And I felt like I was on cloud nine: Sunshine and swings and kids and sharing and laughter - all was right with the world.

After about 10 minutes I told Jules she needed to get out of the Swing and give other kids a chance to use it. There were no kids waiting for the Swing at that point but I felt like we should take a break just in case someone wanted to use it. That's a good mom move, right?

It took less than a minute for the original little girl to run back over to the now empty Swing and proclaim loudly that she wanted another turn.  I was smiling at her, thinking "Yes, of course, now it's your turn!" But this time her nanny told her no.  This swing was not for her, the nanny explained, she could do something else instead. The little girl protested, and silently I protested too, but the nanny picked her up and carried her away to another part of the park without further discussion. My heart sunk. I wanted the little girl to come back and swing on the Swing, the Swing she thought was so fun, the Swing that in my mind was not just for Jules but was also for her.

A few minutes later while Jules was still playing in the wood chips, another little girl ran to the Swing and started trying to climb in.  Her mom quickly walked over and sternly said "That one is not for you, it's for other kids, it is not a toy for you to play with."  And without looking at us the mom took hold of her daughter's hand and walked her to another part of the playground, leaving us alone with our Swing.

And my heart sunk a little deeper. I felt like shouting to the whole playground, "Friends, come back! Please, come back by us, play near us, share this fun Swing with us, and keep thinking of this whole place as being for all of us!" But I stayed quiet.

Jules took another spin in the swing. No one else came around while we were there. Then we packed up and drove home.  And my heart continued to hurt. For weeks it has continued to hurt. I felt sad and still feel sad. Sad that somehow in those tiny interactions a message was sent to those two little girls to stay away from my little girl - micro messages that are tough to spot and nearly impossible  to retract - but that over time become the ways of the world...

And here is the thing - I KNOW, I KNOW, I KNOW that both the nanny and the mom were totally trying to do what they thought was right regarding the Swing. I know they were thinking that because we were there they were supposed to let us have it. I know that. And I know their actions were coming from good intentions and I appreciate them trying to be so considerate - I really, really do. It just hit me that in their efforts to be considerate they were sending the wrong message about the person they were trying to be considerate of.  And those little girls heard that being considerate to Julia meant to move away from and separate from her. And that makes me sad.

I started to wonder, if kids are told the Swing is not for them but for others, what do they then think about the kids they see in the Swing?

If we tell kids the Swing is different and off limits are we accidentally telling them that the kids who use the Swing are different and off limits?

Every time we scoop our kids up and move them away from another person what are we telling them about that person?

I don't know.

I don't want this to come off as another, "Hey everyone out there, do this differently when you are around people with special needs." I know that gets old. I know most people are trying super hard to get it right, whatever right is. Honestly, I just saw this as an opportunity to think about our messaging to kids, because it struck me so clearly as I watched those interactions play out that what an adult meant to be a message about consideration could so easily be interpreted by a kid as a message about segregation.

So maybe if we can just try to watch this little thing, this little part of our communication, this subtle message to our kids that different is something to distance from rather than something to move towards, if we can shift from "them not you," to "all of us," maybe, just maybe we can change the ways of world.

Yes, one step towards each other at a time, we can change the world.

Tuesday, March 15, 2016

The Sad Ones

Several years ago when Julia was about two, I met up with a friend for coffee at Starbucks. We had just settled in to our seats with drinks in hand when two little ladies shuffled by us. Upon further inspection and a little eavesdropping I realized the pair was an elderly mother with her adult daughter - the daughter had Down Syndrome.  Both my friend and I observed them for a few moments before turning back to each other. I was about to comment on how precious the two of them were when my friend spoke first and somberly said, "Some days you see the sad ones." 

I'm sure my face fell.  
Sad ones? I had not expected that. 

I don't remember what I said in response, I probably just tried to move us quickly on to safer ground. But the moment stuck with me. We had just witnessed the very same scene but saw two very different stories. 

I saw happiness and family.  I saw something I prayed for in my own story -which is many more years with my daughter.  

My friend saw sad.


~~


I have this fear that people think our story is sad. 


I fear that no matter how many times I profess the opposite, some people will continue to think my words are nothing more than a positive spin on a negative story.  


I fear that no matter how many different ways I try to explain that Julia is a blessing, people will assume I am simply making the best of a bad situation. 


I fear the assumption will remain for some that we are putting on a brave face to hide our disappointment. That we are somewhere between saints and martyrs for loving our child. That we are admirable for continuing to put our best foot forward given the hand we've been dealt, but the bottom line remains our story is sad and we are the sad ones.


And while I know I will never change every person's mind on this, the fear of being so grossly misunderstood drives me to keep trying. Julia deserves that. 


So once again, for the record, we are not sad about Julia. We are not enduring her, we are not tolerating her, we are not suffering as a result of her. We love her and we like her. And it hurts when loving her is seen by some as heroic - it hurts because nothing could be farther from the truth. It does not take heroism to love our child - and I wonder what I am doing wrong in telling our story that some would still think this is the case.

Regarding the compliments, I am grateful for them and humbled by them. I know they are being given in kindness, but I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something. 

  
And the same goes for the opposite. When I am not those positive things (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed - I am those things by my own doing - with or without Julia. She is not to be blamed.

If I am positive it is not an act of overcoming Julia, if I am negative it is not to be blamed on Julia. 


If you see any good in me, it is by the grace of God. 
And when you see the bad, the fault is my own.  

A lot of people are happy in seemingly hard situations and miserable in seemingly great situations - I think we have to stop assuming we understand situations based on appearances and let people tell us how their story goes - and then believe them.

My story with Julia is a good one. My situation makes me happy. She is my best gift. She is not the hard part of my life, she is not where I have to be brave or dig deep. 


In her memoir, Lena Dunham wrote this in response to people praising her: 
 It's not brave to do something that doesn't scare you.
This is how I feel about my life with Julia. I'm not being brave, she doesn't scare me.  

What scares me is thinking about life without her, that is when I have to be brave.  


A little girl with epilepsy died suddenly two days ago. She had been doing well recently, she wasn't even in a really bad place with seizures. But she died. Unexpectedly. At the age of 13, while sleeping in her daddy's arms, because of epilepsy.  

This scares me. 

And this is the sad story. 
But not ours. Not yet. Not while we are still together.

So friends, will you promise me something?  


Will you promise me you will try to fight the thought that we are a sad story.  Will you trust that the story I am telling you is the true version? That Julia is a blessing, without qualifiers. And every moment we get with her only makes this story better. 

And if, God willing, we are given many more years together, and we get to be little old ladies, leaning on one another as we shuffle side by side through Starbucks - will you promise to think to yourself when you see us go by, "Some days you get to see the really happy ones." 


And that will be the truth.





Saturday, February 20, 2016

If you came here looking for porn...

Hi there!

It recently (as in about 2 hrs ago) came to my attention that due to an uncanny similarity in names, you may have come to my site looking for something other than stories about life with my daughter, Julia. 

And while I am indeed Julia's mom, I am not Julia Ann's mom (actually to be honest, I am Julia Anne's mom, but it's Anne with an E, so still different) - and so, if you came here looking for porn, you've probably already figured it out, I am not the mom you are looking for.

But hey, since you are here why don't you stay for a second - I have something I want to say to you. Yes you! Reader who came here looking for porn but is reading my words instead - I have something to tell you!

You matter.
You matter a lot.
You are incredibly valuable.
Your life has purpose and meaning even if it doesn't feel like it right now. 
You still matter.

I don't know what you are going through. I don't know what you have done or what has been done to you. I'm sorry for the pain it caused, but nothing that has happened could change the fact that you matter.

I am not judging you for choices. I get what it's like to want to distract and numb when life hurts. I do. I happen to be in the camp of people who believe that we are all doing the best we can with what we've got. So I think you are doing the best you can - even if what you are doing is looking for porn. 

But you didn't find porn this time did you? You found me instead...

You found me telling you that you matter. That you are more than your pain, you are more than your past. You are more than the people who have hurt you, you are more than the decisions you have made. 

You matter. 

And so because I believe we are all doing the best we can with what we've got, I now want you to do the best you can with what I just told you. Before you move on to find what you were looking for in the first place, will you pause a second? Will you think about what I just said? Will you consider it? Will you consider that you do matter? Will you question for one second why a search for something far more popular than this little blog led you here instead? Could it be because I'm right? Because you really do matter and you not only needed to hear it, you deserve to hear it? Could it be there is more to your story than hiding and distracting and numbing?

I think maybe a part of you knows it's true, but it's hard to feel it. It's painful to let it sink in. That is okay, it really is. Feel it as much as you can right now, and go do the best you can with what you now have. 

Because you matter, friend. 
No matter what, you matter. 
And you are welcome here anytime.

-Laurie, Julia's Mom

Thursday, February 18, 2016

Julia and Coco: Nearly 8 Times Julia Channeled Her Inner Coco Chanel



So Julia is a fashionista and Coco Chanel was an advocate... who knew? 



1. Best decision ever!





2. Jules, you've opened my eyes to the beauty and necessity of differences.



3. Every day little lady, every day!




4. Even more so!




5. Yes you are!

                           



6. Julia, you are the most fun!



























7. Well, obviously!



























8. So this one isn't actually a Coco quote, hence the "Nearly 8 Times" title, but it is often attributed to her and I love it, and I feel like it's something Coco would have said...you know, since I knew her so well.


























Bonus Photo:   It's really quite easy Coco, what's not to understand?

Wednesday, February 10, 2016

Slumber Parties and Promises

Every Wednesday night Julia spends the night at my parents' house.

It's true - every single week - on Wednesday night - my mom hosts Julia for a sleepover.

I think she does this because she and my dad like having Jules around. She also does it to give us a little break in the middle of the week.  And back when Julia wasn't sleeping  much it was a way to ensure we got at least one really good night of sleep every seven days.  These are the reasons she might give if you asked her why...

I'm not sure though if she remembers that every time she does this, every single week when Julia spends the night at her house, she is also keeping a promise she made to me 8 years ago after Julia was born.

~~

Most of my pregnancy and the early months of Julia's life were entirely focused on the questions of survival and diagnosis. Will she live? What are we dealing with here?

Life beyond that wasn't in my realm of consideration, I could no longer picture what happens next...

The first time I remember grieving for the future I once envisioned caught me completely by surprise - I guess that's how grief works.

A Pottery Barn Kids catalog arrived in the mail one day when Julia was still a baby - we had no money at the time, but I remember wishfully flipping through the pages thinking about all of the beautiful things I wished to buy for Julia one day, when my eyes landed on a white trundle bed with two smiling little girls sitting on it.

And I crumbled.

Will Julia ever need a bed like this?
What does it mean if she never needs a bed like this?
Will she ever have a slumber party?
What if she never has a slumber party?
What if she never has a slumber party because she doesn't have friends?
What does that mean if she doesn't have friends?
What does any of this mean?
How does this work?
She survived - but now how do we live? How do we do this life?

Somehow I packed us up and we made our way to my mom's house where I fell into her arms and cried and cried and cried and cried and told her about the trundle bed and my fears.

She just held me.
She mercifully did not try to answer my impossible questions.
She thankfully did not try to reassure me that my fears were wrong, nor did she try to convince me everything would be alright. She just held me and let me cry and gave me time to feel what I needed to feel.

And then she said to me the one thing she could say with certainty, "I will have slumber parties with Julia."

And I knew she would.  I knew my amazing, devoted, self-less mom - who always puts her words into action, would have slumber parties with my girl. No matter what came next - no matter how the rest of life worked out - I knew without any doubt my mom would make good on her promise.

~~

So every Wednesday morning as we pack Julia's bag and I say to her, "You are going to Mimi's house today and you get to spend the night tonight!" what I'm really saying to both of us is, "Mimi loves us and she keeps her promise."

Jules and Mimi (and Macaroni the Doodle)


Wednesday, February 3, 2016

Bathroom Remodel or My Best Christmas Present Ever!


Hello friends!

I am once again hijacking my own blog to do something a little different - I am writing my very first home makeover blog about our new main floor bathroom!!!! And I'm super excited about it - so prepare yourselves for a many, many exclamation points!!!!!!!!


Before and After modeling courtesy of our Golden-Doodle Macaroni

Quick background:

We moved into our house a little over a year ago - it's a 1950's ranch that had been flipped prior to us buying it. Some of the flip was good, some not so good. The only bathroom on the  main floor fell into the not so good category. The original tub remained and had been glazed, and the finishes were not well done (the tile was bumpy and not cut straight), but the main issue was just that it was super small. The tub served as a convenient, but not optional, foot rest when you sat on the toilet. The space between the tiny vanity and the tub was about 18 inches. Twice Julia walked in, bumped into the vanity and fell into the tub- thankfully both times I caught her by the ankles before she crashed, so it was kind of funny -  but also really scary.I worried about how this room would work for us as she gets bigger.  So all that to say, I really hated this bathroom.  Really. Hated. It.

Shortly after we moved in we consulted with my husband's Uncle Al, who is a contractor, to get his opinion on our options for this awful room.  He suggested that when we were ready to do a remodel we could take down a wall and borrow about 36 inches from the adjoining bedroom.  We loved that idea and started day dreaming about a time down the road when we would be able to do a full gut, expansion, and remodel. To say I obsessed about this would probably not be an exaggeration - I have a tendency to fixate a little when it comes to home decorating possibilities... Wes loves this about me!

So fast forward to this past Christmas.  We were still in the day dreaming phase in regards to the bathroom when I received a call from Uncle Al telling me he had drawn my name for the family gift exchange and he was going remodel the bathroom for me as my gift!!!!! WHAAAAAT??????  I couldn't believe it - he was going way, way over the suggested $50 limit. He reassured me it would be his pleasure to do this for us and so on January 5th the project began!

We had lots of fun picking out appliances, fixtures and finishes - for all of my hours watching HGTV, I had never actually experienced going through a remodel before. It was so much fun and we absolutely LOVE the final result.  It's DREAMY!!!!  And most importantly it's now so much safer and more accessible for Julia -  which is truly an amazing blessing for us! Oh and also, I can now move on to obsessing about other things - yay!

So without further ado, I'll let the pictures tell the rest of the story!


Before:

Macaroni, demonstrating how cramped the old bathroom was!


The old bathroom.
                                          
Original cast iron tub.
Tiny vanity, boring finishes... blah!


AFTER!!!!

Macaroni's haircut along with the newly expanded bathroom means he has plenty of room now to relax!


Yay!!! The wall was bumped back creating an extra foot and a half of space!
                                         

Lot's of room for Julia to walk in and not tip into the tub!

The walls are a white beveled subway tile.
The paint is a brownish-black called Pepper from Behr.

We love the rough, concrete look of the floor tiles in contrast with the white wall tiles.
                                        
                                                 
The new tub is great for a little girl who loves to create tsunami waves!


We love how the tile turned out!
 I was planning to go with a darker grout but the tile guy talked me into white and I think he was right!

Thank you for blessing us Uncle Al and Aunt Jan!!!!
We love our new awesome bathroom!!!!!!
                                       
                                              

A few more pictures for people who like to see the in-between:


Gutting!
The wall came down!

The new bump out!
Julia's room is adjacent so we added a lot of insulation.
New tub is in!
I got to do the paint!
I LOVE the color - Pepper - my new favorite!!!

The old floor had to be leveled.



New floor down!


Tiled walls up!


I am so very grateful for this amazing gift - best Christmas gift ever!!!!



Thursday, January 28, 2016

Medical Marijuana: A Year in Review

One year ago I shared a blog about Julia starting medical marijuana and wrote this line:
If all goes as planned, Julia will start medical marijuana on Monday.

Julia the Flower Girl
Well, all did go as planned and if all continues to go as planned Julia will hit her one year anniversary of taking medical marijuana on Monday.

What a year it has been!

So many things have happened...
We have gained new friends as a result of choosing this path.
Our story has been widely shared.
We have been praised and we have been critiqued.
We have been called trail blazers and we have been called child abusers.
We have become advocates, we have seen laws pass, we have felt attitudes shift and we have watched some of our medical refugee friend's return to their home states!

In 12 short months we have witnessed progress!

But on a more personal level, the main question people have about this past year is:
Has it worked for Jules?

And the answer is yes! Thank the Lord, yes! It has worked, it IS working!!!

Julia and her new buddy Macaroni


And here is what I mean by working:

First:  Medical marijuana (some call it CBD oil, Julia's exact oil is called Haleigh's Hope and has both CBD and THC in it), has provided Julia with seizure control!

This is the main point - right? To keep those *bleeping* seizures away. And so for this main, most important purpose, it has absolutely worked!

We had a few bumps in the road, especially early on as we worked to find the correct dosage. One of the side effects of this medicine has been an increase in appetite, so Julia gained weight faster this year than she ever has before. There were a couple of times when we got behind in her dosing due to not realizing how much weight she had gained. When this happened she did have a few seizures, but once we adjusted the dosage we gained back seizure control. We also still see seizures when she is sick or getting sick, (that happened earlier this week in fact) - but seizures when she is sick is to be somewhat expected. Overall though, when the dose is right and she isn't sick, we are not seeing seizures - amazing!

Second: Because medical marijuana worked for seizure control, Julia was able to wean off of all other medications.

Julia took her last dose of Keppra back in March, so for 11 months now she has only been taking medical marijuana. This in and of itself is incredible because she had been on Keppra and a cocktail of 13 other pharmaceuticals since she was a tiny baby.

Getting Julia off of Keppra was part of the reason we chose this journey - we were concerned about what years of taking pharmaceuticals was doing to her little system, we suspected Keppra specifically was causing her to experience extreme agitation, rages and an overall sense of discomfort in her own skin.  We wanted to see what she was like if she was not on that medication - and now we have!

Third: Julia has had an incredible, incredible year developmentally!

My opinion is that this developmental jump is the result of being off of Keppra more than being directly caused by marijuana.  So, just to connect the dots, being on marijuana allowed her to get off Keppra which has then allowed her to flourish developmentally because she is no longer as agitated, distressed and distracted by the side effects of Keppra.

Again, this is not scientific, this is just my best guess about these changes - Julia is non-verbal and cannot tell me exactly how she feels, but through observation - mine, my husband's, family members and other people who know her well - we all agree she is a changed little lady. She is and always has been our fabulous little Jules, but we just feel like she is MORE Julia now, more her true self.  A calmer Julia, a happier Julia, a Julia who can tolerate new situations and different stimuli so much more than she used to be able to. A Julia who simply yet miraculously seems more comfortable in her own skin.

And as a result of feeling better, Julia did a ton of new things this year: she wore sunglasses! She went on play dates and actually had fun. She held on to the rope of a tire swing. She let me clean her ears with a Q-tip and trim her nails with clippers without either of us crying. She started drinking out of a new kind of cup after using a baby bottle for 8 years. She repeatedly found the letter "J" on her toy laptop - "J for Julia!"  She let us give her hugs and kisses more often than before. She lets me hold her hand, and she touches soft things which used to seem unbearable. She pets her puppy, Macaroni. She learned how to make her horse "trot" in therapy. She made up her own funny game with my dad where she carries a pillow to him and he says, "Oh thank you Julia, you brought me a pillow, I needed a pillow," and then she promptly throws the pillow as far away from him as she can and starts cracking up... She is quite the tease!!!

She started making noises again this year with her sweet little voice and even initiates a little conversation with us of "Hmm, Hmm, Hmm, Ha-Ha-Ha!"

And this winter for the first time ever, she played in the snow because she was finally able to tolerate wearing a hat and mittens!!!  My heart could barely hold all of my happiness.

Hat, sunglasses and mittens. Boom!
It's been a crazy, wonderful, blessed year - we have hardly been able to keep up with and keep track of all the good things happening for our girl. I've been both saddened to fully realize and amazed to observe how much change can come as the result of not being constantly distracted and distressed by sensory stress and overload.  She really had been dealing with a lot of negative side effects from those other drug, and now that she is feeling better because of marijuana, so many worlds have opened up to her in just one year.

So has it worked? Yes! It has worked for Julia, for now.

Will it work forever? Probably not.

I don't say that to be a downer, it is just reality. Staying away forever is not typically the way seizures work for kids like Julia.  Seizures, for kids like Julia, keep finding a way back. I've said this before and I'll say it again - in the battle against epilepsy you have to have a deep bench.

As much as we all would love a miracle drug that will keep these seizures away forever, it's more realistic that in Julia's lifetime we will need multiple miracle drugs - one after another after another - to keep fighting off these relentless seizures and give our girl a chance.

So the reason we share our story is not simply to promote marijuana - although of course that is a big part of it - but no, we share our story in order to advocate for MORE TREATMENT OPTIONS and access to all treatment options!!!! We believe everyone in this fight against epilepsy should have access to marijuana.  We also hope and pray for more treatments to be discovered. We hope researchers keep researching, we hope pharmaceutical companies keep testing and developing new drugs, we hope tech companies continue improving technology related to seizures, and we hope media outlets increase sharing stories like ours to raise more awareness about epilepsy.

Our fight is not for marijuana, our fight is for the life of our child.

My prayer as we continue to share our story to anyone who will listen is that minds will keep opening, attitudes will keep changing - and people will learn to be more frightened by the word SEIZURE than they are by the word MARIJUANA. And that will lead to lives being saved.


Julia and Scooter 

                        #marijuanaismedicine #parentsforpot #haleighshope #bornwithapossibility