Tuesday, December 22, 2015

Three Movies to Explain Our Lives

I was driving to church Sunday morning contemplating important thoughts about the Christmas season - namely which holiday movies I still need to watch before Christmas on Friday.

I'm not a huge movie watcher but when the holidays come around watching certain movies feels like part of the tradition of the season. I still need to watch Elf, A Christmas Story, Christmas Vacation and White Christmas to keep the spirit of Christmas alive. I've got some work to do!

As I made my mental list of Christmas movies, another movie question popped into my head: What is my life movie list?  Which movies would I say describe or at least help describe our lives? Which movies might I recommend to someone who wanted to understand us better?

There are three.

1. Groundhog Day starring Bill Murray

Murray plays Phil Connors, an arrogant Pittsburgh TV weatherman who, during an assignment covering the annual Groundhog Day event in Punxsutawney, Pennsylvania, finds himself in a time loop, repeating the same day again and again. After indulging in hedonism and committing suicide numerous times, he begins to re-examine his life and priorities.
Why Groundhog Day?  

Well, when you have a child with significant developmental delays, time slows down.

T   i   m   e          r   e   a   l   l   y          s   l   o   w   s          d   o   w   n.

What is often accomplished by typically developing kiddos in weeks or months can be years in the making, if ever, for our kids.  Development at this pace can at times feel a little like life is on repeat - the same day over and over and over again.

But it's not a bad thing - and that's one part of the movie I love and connect with - the main character, Phil, is reliving the same day over and over again (I just read on wikipedia that it was probably 30-40 years that he stayed in this one day) but he's becoming a better person from it. What he first thought was a curse, he eventually realized was a blessing. And while I've never thought of Julia as a curse - I think the lesson Phil learned still applies - we've learned with every day how blessed we are by Julia.  And as a result of her unique pace of development, we've also learned to slow down, to focus in, to see the details that can get missed when life is zooming by at normal speed. I think we've learned to appreciate small change and recognize that small is still significant and should not be taken for granted.

My favorite part of the movie in terms of how it relates to us comes at the end when after countless repeats of the same day, waking up to the same Sonny and Cher song, Phil finally wakes up to a new day, the next day, but the song playing on the radio alarm clock is the same song it has been for all the days prior. So you could initially miss the fact that something is different except that you have heard the repeated line so many times your ears are tuned in perfectly for those repeated words and you instantly pick up on the fact that you are hearing a different part of the song.  This is how it feels sometimes when Julia does something new - you could miss it if you aren't very tuned it. You could miss it if you are looking for something bigger.  You might think this thing is the same as the before thing unless you are so familiar with the before thing that you know it forwards and backwards and inside out.  And when you know something that well, you can't help but notice when the littlest shift occurs. And it might not seem like much to someone else - someone who thinks change means switching to a new song.  But no, it's not a new song. It's not going to be a new song, and it's definitely not going to be a new album or artist or genre. It's the same song, our song, but new lines - and oh how sweet those new lines can sound!


2. 50 First Dates starring Drew Barrymore and Adam Sandler

A Hawaiian island playboy has to use his imagination to win over the girl of his dreams when he discovers she has no short-term memory. Every night he is erased from her memory so he has to make her fall in love with him all over again the next day...and the next...and the next!

Why 50 First Dates?

Julia has a very rare type of epilepsy called Electrical Status Epilepticus during Sleep (ESES) - this means that while she is sleeping her brain goes into a long continuous seizure.  This is a non-convulsive type of seizure, her body looks as though it is peacefully sleeping, but inside her brain is actively seizing.  Because this is so rare there isn't a ton known about it's full impact on the brain's functioning - but needless to say when 95% of your sleep is a seizure, there is an impact.

When we first got the diagnosis I thought of this movie 50 First Dates and how the main character, Lucy, has a form of amnesia that causes her to wake up each day thinking it is the same day.  Sort of the opposite of Groundhog Day where the actual day itself is repeating and Bill Murray's character is the only one aware of it - in this movie time is passing normally for everyone except Lucy, who wakes up every morning and is "reset" back to the same day.  I wondered if this is what it is like for Julia with her sleep seizures, she lives a full, active day with us but when she goes to sleep at night her brain cannot retain what she learned and it is lost. This is not scientific or medically grounded- it's just how I think about it, and fuels some of the questions I ask myself: How much is she able to retain? And how much is lost?  In the movie you see over time that despite the amnesia not being cured, Lucy is on a deeper level retaining new information. And I know Julia is also learning and retaining - but not in the way we do - because her brain has so much to deal with at night.

The other part of this movie that I love so much is what the rest of the characters do to support Lucy and care for her.  Lucy's dad, brother and neighbors work hard every morning to keep her from being traumatized by her amnesia. They go to great lengths to protect her from what they fear will hurt her.  And then Adam Sandler's character enters the story and he falls in love with Lucy before knowing about her condition and he quickly joins the rest of the team in doing whatever it takes to help her and be in her life, because she is so worth it. They don't question it - they don't complain that it's too much work - they just love her and so they do what she needs.

This is how I feel about Julia - there is no question - we just do what needs to be done to be with her and love her and make life work for her as best as possible.  It's not a martyr complex, I'm not seeking praise for it - it's just what we do because we love her. In the movie it's just what they do - I guess because they feel that repeating one day with the person you love is worth more than a lifetime of days without them - so that's what you do.


3. Awakenings starring Robin Williams and Robert De Niro
The story of a doctor's extraordinary work in the Sixties with a group of catatonic patients he finds languishing in a Bronx hospital. Speculating that their rigidity may be akin to an extreme form of Parkinsonism, he seeks permission from his skeptical superiors to treat them with L-dopa, a drug that was used to treat Parkinson's disease at the time.

Why Awakenings? 

We have been fighting epilepsy since Julia was seven months old. The first type was a devastating form called Infantile Spasms (IS). IS basically stole her from us for 18 months.  Julia was nearly in a vegetative state because of the effect this type of seizure has on the brain.  When we finally found a medicine that worked for her, we experienced our own awakening - development that had been lost started to return - it felt like she was waking up and rejoining us. Just like in the movie, we had her back!  And for a while we thought we had her back for good.  But then we started to lose her again, this time to ESES  -  this other type of Epilepsy that was once again stealing her from us a little at a time.  We fought back again and found another drug to keep her with us.  But even that has now started to wear off - the ESES is coming back.  And while we haven't lost her yet and will do everything in our power not to lose her again - losing her to epilepsy is something I think about and fear. Like in the movie - medication can sometimes only work for so long and then what?  Will our precious love be reclaimed by epilepsy?  I pray this isn't the case - but it is a real fear.

I saw this movie long before I had Julia, long before I had heard of forms of epilepsy that rob your child of their development - but the movie always stuck with me. It was like I was meant to have it in my head before all of this happened - maybe as a lesson or reminder to appreciate what we have while we have it and to celebrate every moment we are given - because in truth all our moments are indeed numbered.

~~~

So that's it. My life movie list. I hope you will consider watching these movies if you haven't seen them already, I think they are all pretty great! Or maybe watch them again with my perspective in mind if you are so inclined!  And please, share with me some of the movies you feel help explain your own life, I'd love that!

Oh, and one last but crucial thing I have to say about this list as a whole - two out of the three movies listed are comedies. That in and of itself is important in trying to explain us. Our lives are more comedy than tragedy. More joy than sadness. More laughter than tears. We spend more time enjoying the journey than fretting over it - and even in our moments of sorrow we know we have so many reasons to smile. Not a bad plot line in my humble opinion!

Julia Anne, age 8: Our little star!



Tuesday, November 3, 2015

Tiny Hope for Haiti

Dear Friends,

Confession, this is not a typical I'm Julia's Mom: brag, boast, rant or rave. In all honesty I'm stealing this platform today to share with you another part of my heart.

Some of you may already know this about me, but for those who don't, I have fallen head over heels in love with a ministry in Haiti called Footprints of the Son. I can't even remember how I first encountered them, but once I heard about the amazing work they are doing for kids with special needs in Haiti, I was hooked!!!

Toto learning sign language from his awesome teacher!
Their founder, Heather (who has become one of my heroes) and her husband Papito, run a school for children with special needs.

In Haiti kids with special needs are often turned away from local schools and have nowhere to go.

Footprints of the Son provides a place where these precious kids are wanted and valued.
A place where they belong! Where they are cared for, and fed, and get to learn!!!!

The school is also a form of respite, which is another part of Footprints of the Son's ministry, the kids go to school to get loved on and the parents get the opportunity to rest or go to work in order to continue caring for their family - it's such a beautiful and needed partnership.

Footprints comes along side these precious families who would otherwise not be getting any type of support.


In addition to school and respite, Footprints of the Son also provides outreach support to families in the community. With the outreach program they help with things like food, medical needs, and medical supplies.

The work they are doing is astonishingly beautiful. Beautiful and miraculous and important and inspiring - and you can probably understand why I fell in love!

Papito conducting an intake for a new child in the outreach program!

So in the past few months I've had this idea running in the back of my mind that I might start a non-profit here in Colorado in order to offer more support to Footprints of the Son. I've been mulling over the options, reading articles about starting a non-profit and trying to think of the best way to roll this idea out - at some point, down the road, in the future, when the timing feels right...

But, all that changed last week when I spoke to Heather and she informed me that as of January, Footprints is losing a significant portion of their monthly operating budget previously funded by another organization. One third of their monthly operating budget - gone. And they have two months to prepare.

Suddenly all of my thoughts and worries about how to perfectly roll out my idea for a new non-profit became really unimportant, because there is no longer any time for that - they need our help now!! This budget loss could impact their ability to keep serving the kids and families who need them so much.

So, here is my big roll out friends: I'm starting a non-profit called the Tiny Hope Foundation and we are going to try to help Footprints of the Son with the immediate budget deficit they are facing.


We aren't set up yet, we are just getting our thoughts organized, we don't even have email (and by we, I mean me, it's just me at this point) - but the need is now, so despite not being organized, we (me) are asking for your help!!!!

If you have a heart for Haiti, or kids with special needs, or missions work, or are looking for a worthy cause to support this holiday season.. If anything in all of my rambling has tugged on your heart, here is what you can do to help:

1. Donate to the Tiny Hope for Haiti Gofundme Campaign
(Please note: We are using Gofundme because we are not yet set up as a non-profit and do not have tax exempt status, so this is the best, immediate option.)
Please help us raise at least $6,000 before the end of the year to create a three month budget cushion so that Footprints can cover their monthly costs come January without disruption to the care they are providing. This will also allow for some time while we all work together to get additional longer term funding plans in place.

2. Share - please share this post or the Tiny Hope for Hait GoFundMe link with your friends and family. Maybe this isn't exactly your thing but you know of other people who would eat this up - please share with them. Footprints of the Son is a very tiny ministry and I am just one person with a tiny blog - but I know with your help and the power of the internet we can spread the word and grow their support!

3. Pray- of course please pray, always pray! Heather is so much better about this than I am, she would have this at the top of the list and I have it third... So in addition to praying for the kids and the funding needs to be met, maybe you can also pray that I become a little more like Heather!

4. Follow Tiny Hope and Footprints of the Son on Facebook. This will allow you to stay updated and connected with us regarding this campaign and also to learn more about other ideas for fundraising and support we are working on!!!  I'll be sharing more information about several additional ways you can help in the coming weeks and months! (Sponsoring individual kids, giving food blessings, sewing dresses, sewing bibs, donating clothes and medical supplies, attending fun fundraisers, visiting Haiti...) Super exciting stuff!


Thank you so much my dear friends for reading this and for considering it a blessing to be able to help!  My heart is just bursting with anticipation over the beauty and blessings that will come from this great need!

With so much love and gratitude,
Laurie

Tiny Hope for Haiti

#tinyhopeforhaiti #tinyhopefoundation #footprintsoftheson

I met Heather earlier this year! We did a quick wheelchair hand off during her layover.  I'm the one who looks starstruck!


Monday, October 5, 2015

What I See

When you look at this picture you most likely see three little girls on a tire swing and I don't disagree.





But if I let myself look a little longer, specifically at my daughter in the middle, I see more. 

Here is what I see:

I see a little girl who used to be completely blind, looking at something.

I see a little girl who for most of her life would not touch anything, holding the rope and allowing her hands to scrunch up against the fists of her friends.

I see a little girl who used to throw herself backwards whenever she was in the upright position, sitting ON A TIRE SWING, leaning in towards her buddies, being a part of the moment with them.

I see a little girl who used to become overstimulated and overwhelmed with every new experience, spending the day at a farm she's never been to, on a swing she's never sat on, doing an activity she's never done before, staying calm and having fun.

I see a little girl whose neuropsych testing earlier this year described her as having the cognitive ability of an 8 month old, continuing to hold on to that rope because she is smart enough to know she will fall off if she lets go.

I see a little girl whose prognosis as an infant was "vegetative state" if her hundreds of seizures a day did not stop, alert and engaged, interacting and participating in a play date.

I see a little girl who has been repeatedly deemed by her health insurance company to have "no restorative potential," bursting with potential, overflowing with possibilities, perfect exactly the way she is, filling her own unique spot in this world, and in absolutely no need of restoring to anything for anyone.

I see a little girl whose doctors warned before her birth "may not be salvageable," alive and joyful; making the world a better place simply by being who she was made to be.  

And I see two precious little buddies, unaware of everything I am seeing, simply loving on their friend, no questions asked. 

Three fabulous girls? You are absolutely right. I see that too.




Friday, August 7, 2015

To My Fellow Pro-Lifers, Please stop using this argument!

There is an argument often used among my fellow pro-lifers that makes my skin crawl every time I hear it.

The argument follows these 4 general steps:

  1. An abortion was wanted or recommended, for whatever reason.
  2. It didn't happen, for whatever reason.
  3. And the child ended up being: fine, healthy, wonderful, perfect, a superstar, (insert list of specific impressive achievements here)!!!!!!!!
  4. So therefore I am pro life.
Wait what?????

So it's a good decision if the baby turns out "fine"? 
It's a good decision if the child ends up having an impressive resume? 

That is what you are saying here when you use this argument: It's a good decision if the doctor ends up being wrong, it's a good decision if the baby is smart, healthy, attractive and successful, and it's a good decision when the baby becomes someone our culture thinks is great. You are saying with this argument that those are the reasons to be pro-life.

You point to the positive attributes and outcomes of a non-aborted baby and say "Ha - take that, save the babies because some of them might end up being smart or famous."  That's a terrible pro-life argument. It's actually not even a pro-life argument - it's a pro-outcome argument.  And what about the cases where this outcome doesn't occur? Where does that leave you?  If the baby does have disabilities are you then saying the abortion would have been a good choice?  If 20 years later the baby is a drug addict living on the streets would you lament that decision not to abort?


This argument makes it seem as though the jury is out on whether or not the decision to keep the baby was a good one until we find out what kind of person the baby becomes. That's not pro-life. And talk about pressure on this life: "Okay baby, I was going to abort you, an abortion was recommended to me - but I didn't do it, so now you better prove me right."

Hell no!

If you are pro-life and if you claim to value every life, then the decision not to abort is a good one regardless of what happens next in the baby's life.

Regardless of the baby living for 10 minutes after birth or 10 decades.
Regardless of the baby being perfectly healthy or having disabilities.
Regardless of the baby going on to live a charmed life in the eyes of our culture or a challenged one.

When we use this type of example, the pro-life argument moves from being about the belief that a pre-born baby is a life in need of protection to a justification that the life is worth saving based on what the life later becomes. And that's not pro-life!

If you believe, like I do, that a pre-born baby is a life worth protecting then that is all that matters - it doesn't matter what that person ends up doing or becoming after birth - that life is still worth protecting and no further justification is needed.

So please stop using this argument!!! Every life is inherently valuable, every life matters - that's all you have to say.




Thursday, July 16, 2015

Making A Wish: Backyard Oasis Part 1

On Sunday morning Julia had two seizures. One in the lobby of our church, the second at home. During the second one she stopped breathing briefly and turned blue.  We spent the rest of the day watching her closely and worrying over what was going on.

On Monday morning Julia woke up and had another seizure. I held her in my arms and prayed for the THC oil we gave her to kick in and stop the seizure. I prayed she would keep breathing. We spent the next 4 hours at the doctors office in an exhausting and emotional attempt to get her blood and urine in order to run some labs. Three seizures in 24 hours is a lot for her, something must be going on we thought.  The labs didn't show us anything. So we returned home, exhausted and worried, with the plan to just keep watching her.

It just so happened that on Monday afternoon at 3:00 we had scheduled to have the first consultation for Julia's Make-A-Wish: A Backyard Oasis!  We were tired from the events of the previous 24 hours but still excited to meet with the landscaping company coordinating Julia's wish.

We really haven't known what to expect...In the weeks leading up to this consultation we definitely talked about some things we hoped they would do in our backyard for Jules, but we were very cautious, not wanting to expect or assume too much.  We bought this house last fall and the backyard was the one area where nothing had been updated or addressed - it's an old house and the backyard is basically a weed lot.  We know there is a ton to do back there to make it a fun, safe place for Julia to play and us to enjoy with family and friends - so we just hoped the Wish would be a starting point. And we figured we would need to be ready to do a bunch more work to really fully enjoy it.

So we went into the consultation excited to hear what the company was willing to do for Julia's Wish - but we were keeping our hopes tame.

3:00 on Monday came and I actually had to do a phone call for work -so my parents came over to help Wes with Julia while I was on my call and just be here with us for the consultation.  I could see out my office window into our backyard Wes, my dad and the landscaping guy talking and I was so anxious to hear what they were saying. They spoke for awhile and I could see the guy taking measurements but he was gone by the time I was done with my call. I ran out into our living room to ask Wes and my parents how it went and they all three had huge smiles on their faces.

"Laurie, you aren't going to believe it, it's going to be so amazing!!!"

"Really????What did he say? What did he say?????"

"It's going to be awesome. He said 'We are going to take care of all of this. We are going to bring the mountains and the streams to you.'"

At that point I just started crying. I couldn't believe it. After our rough days, after seizures that just shatter any sense of security you try to build, after questioning what we might have done to cause Julia to get out of whack, and thinking we should just stay home, never leave, and try to keep her safe, to have him say 'We will bring the mountains and streams to you,' felt like he understood us. Like he understood how much this means for us to have a place we can enjoy and feel safe together as a family, a place where our friends can come to us. It just felt like a completely overwhelming perfect gift.

Wes and my dad said it felt the guy patiently listened to our simple ideas "Maybe some grass? Maybe a tree?" and was like "Uh-huh, those are sweet ideas. How about you just leave this to the experts? We've got this."

All I can say is that our experience with Make-A-Wish has already been so wonderful. Their goal to give people hope is happening in our lives. Make-A-Wish and BR&D Landscaping are truly, truly giving us hope and something to look forward. This has been such a boost in the midst of some hard days.

I am so humbled we are on the receiving end of something so amazing. And SO EXCITED!!!!! More to come!

Future site for the mountains and streams



#makeawish #makeawishcolorado #wishfulthinking #bornwithapossibility

Tuesday, July 14, 2015

21 Ways Special Needs Moms are Killing It at Motherhood

Thanks to an informative and hard hitting article recently released by Elite Daily, we all now know that young, cool, millennial moms are killing it at motherhood.   Phew, I'm so relieved!

I was inspired by the responses this article generated from "regular" moms like my friend Stephanie Sprenger who are also killing it at motherhood in their own unique way.  I decided to jump on this "killing it" bandwagon and write a response of my own, giving a little shout out to my particular brand of motherhood: The Special Needs Mom.

So, with a little help from my friends, here are 21 Ways (we know there are about a billion more) Special Needs Moms are KILLING IT at motherhood on a daily basis:


We've learned to keep our cool even in the most intense of situations:


 How is she still standing???



"Make it Work" has become our life motto, because adaptation is the name of this game:


Anything is possible with duct tape and zip lock bags! Make it work!


Obeying  the "suggested age range" is for weaker minded women:


A seven year old in a pack-n-play - why the heck not?


We've taken fashionable accessorizing to a whole new level:


Vogue has nothing on you!




We can pack for a trip to the hospital with our eyes closed (which might actually be a good idea given we probably aren't getting any sleep at home and for sure won't be getting any in the hospital):


It's all about the toys people!


We spend more time trying to make the doctor's office seem fun than millennial moms spend in tattoo parlors:


Wheels on the Bus for the 100th time? But of course!




And we've become experts at turning incredibly complicated medical information into reader friendly Facebook updates to keep friends and family in the loop:


So basically, here is latest...

When we say our kids are attached at the hip we sometimes literally mean it: 


No really, he is actually attached to her hip. Go buddy!!

We can add matchmaker to our long resumes because we rock at picking out perfect best friends for our sweet babes:


BFF's!

Our awesome kids are outside the box, so we are constantly thinking outside the box:


Therapy Goat


Therapy Penguin


Therapy Alligator - why not?

Our homes look like one big therapy session and we are actually kind of proud of that:


What CAN'T you do with a pool noodle?


There is nothing we won't try if it means giving our child a chance to  experience something they might love; no mountain we won't climb, no ocean we won't cross:


Anything for you, anything!


Life has taught us there are so many things we cannot control, so when we find something we CAN control, (like a healthy, delicious diet) we control the HECK out of it:




Goddess of Puree!


We are killing it in so many ways - like raising the world's most compassionate siblings:


Special needs siblings rock.


And never taking anything for granted: nothing, nothing, nothing, never, ever, ever:



Every tiny moment is monumental.


We know all too well how fragile this life is. Every single second, every single breath is a gift:

You make brave look beautiful.


In between therapy sessions, doctors appointments, more therapy sessions, homework from therapy sessions, IEP's, cooking those amazing diets, fighting with insurance companies, finding the paperwork necessary to start the fight with the insurance company in the first place, researching new diagnoses, researching treatment options for new diagnoses, and scouring Pinterest for new home therapy ideas, we still know how make time for ourselves and live it up a little:


A nap was part of the date night, I promise!

Part of what makes all this killing it possible is we have partners who are also killing it:

I picked a good one - he is cute AND he cooks!


And we have an amazing village full of other special needs mom's who are killing it too (it's most likely a virtual village, but that is just fine, we've worked hard to find each other and virtual villages are still villages!):


And sometimes when the stars align we actually get to meet in person! Imagine that.


One of the beautiful things about the villages we've cultivated is the way we love each other fiercely in the hardest of times:

Memorial Quilt for our precious Jay


We haven't just accepted this unexpected life we've been given, we've embraced it, big time!!! And we look pretty darn beautiful doing it, if we may say so ourselves!


#SNmomkillingit



What did we miss? Share your "killing it" pictures with us online using the hashtag #SNmomkillingit



















Wednesday, July 1, 2015

What the Medical Marijuana Debate is Really About

The debate goes on - yes or no to medical marijuana?

 As a parent who is currently giving my child medical marijuana for epilepsy it's hard for me to understand the resistance. The answer seems so obvious to me, why wouldn't we try this???

Julia Anne, age 8, medical marijuana for 6 months
But yesterday after reading responses to another mom's blog on this topic, I started thinking that maybe the resistance is because people misunderstand our cause and misunderstand what this whole debate is really about. That is the only way I can make sense of the people who are looking in from the outside shaking their heads and poo-pooing this treatment option for reasons that seem either irrelevant or ridiculous to us parents. The only way these comments make sense is that these people are entirely missing the point.

And the point is this - this debate isn't even about marijuana - it's about our kids! And it's about epilepsy! Desperate parents looking for additional treatment options for our precious kids suffering through epilepsy. Period.

If you think those of us who are speaking out and fighting this marijuana fight are doing it because we love marijuana so much, you are wrong. WE LOVE OUR KIDS! And therefore we love anything that helps our kids. And right now marijuana is helping my kid. If it were kangaroo dung that was shown to stop seizures then you can go ahead and consider me a lover of kangaroo dung.

There are some who have suggested that we marijuana parents aren't being honest about whether or not marijuana is really working for our kids, that we are enhancing reports on it's effectiveness and lying about seizure control. I find this to be so insulting. And again the only way I can make sense of someone saying something like this is that they fundamentally do not understand what it is like to have a child with epilepsy. They do not understand that this whole movement is about saving our kids from a devastating and deadly condition and that marijuana just happens to be one option that is showing some promise in helping our kids.

I know people who have moved across the country to Colorado and are camping- yes, camping - in order to try this treatment option for their child. Do you really think they would chose to camp over being in their own home if it wasn't helping? I know families who are living separately with one parent in their home state working while the other parent is here living in temporary housing with their child because medical marijuana is the only thing that has reduced her seizures. You think people would do that out of loyalty to a treatment option?  No, they do this for the love of their child. You don't make this type of sacrifice for a lie.

When or if marijuana stops helping Julia, my allegiance is to Julia, not marijuana. I won't stick with something that doesn't work because I so badly want her on marijuana -that doesn't make any sense. What I so badly want is for her: 1. Not to die from a seizure. And 2. Not to be miserable from the side effects of the drugs we give her to stop the seizures.

So if marijuana isn't working or stops working we will move on to the next thing that might help her. But we will also keep fighting for every other family to have the chance to find out if it might work for their child.

Seizures are tricky folks, and perhaps that is another thing non-supporters don't understand, seizures keep finding a way back. Especially for the population I am talking about here. I'm not talking about a child who had one seizure as a baby because of a fever. I'm talking about kids who have been suffering from seizures daily for their entire lives. For these kids, their seizures are relentless and they keep coming back.  Therefore we HAVE to keep trying to find new ways to fight them off. In this battle against epilepsy the seizures keep coming back and we keep working to fight them off. There isn't a cure, there is only treatment after treatment - and so we need a long list of treatment options. We need a deep bench. I believe that everyone in this battle should have the right to add marijuana to their list of options - again, not because we love marijuana but because we love our kids.

The only reason we are talking about marijuana with the general public is not to change your minds . about it, I honestly don't care if I change your mind about marijuana - feel the way you feel about it. No, the reason we are going public with our stories is because we have to try to change your mind about allowing it to be an option for families like ours. I do not think your dislike or doubt or need for more evidence should to have the power stop families like ours from being able to try and save our child. We want the ability to try. That's all we are asking for.

Haleigh's Hope: 23:1 CBD to THC


For those of you claiming you need more research to be convinced, we don't have time for the years and years of research you require in order to give us your blessing on this issue.  And what will years and years of more research do for us anyway if you really think about it? It will give us a big fat inconclusive maybe. "Maybe this drug will work for your very complicated child." Which is exactly what we have now with every other drug out there to treat epilepsy - we have a "maybe."  Maybe Keppra will work, maybe Topomax will work, maybe Sabril will work, maybe Banzel will work, maybe Valium will work, maybe Lexapro, will work, maybe the keto diet will work, and on and on and on - these options have years of research behind them and guess what we still get... a maybe.

So why would you require us to sit around twiddling our thumbs, watching our children seize, their lives at risk with every single seizure, just for the research to confirm what we already know - everything is a maybe.

So please, when you hear this argument and read our stories don't make it about your personal feelings regarding marijuana - make it about these kids, make it about access to treatment,  make it about the right to try, make it about parents trying to save their kid's lives. And if you are brave, maybe for a moment make it about you or someone you love being in our shoes. Wouldn't you want people to give you the right to try?

You don't have to love it, you don't have to agree with it - but please do not block it.



Sunday, June 28, 2015

Why Eight is Especially Great

The birthday cowgirl!
Today we threw a Cowgirl Birthday Party to celebrate Julia's 8th birthday!  Yee-haw!

I feel like we've been going non-stop for about three days getting ready for this party - not to mention the four weeks of Pinterest pinning and planning I've been obsessing over. All the work paid off I believe because it was a fabulous day spent with friends and family celebrating our amazing Julia!!

Every birthday is worth celebrating in my book - every birthday is a gift we rejoice over and an opportunity to reflect on how thankful we are to have Julia here. But there is a very specific reason I wanted to celebrate big time for number eight. Beyond marking another year with our precious Jules, beyond celebrating all she has achieved and accomplished and overcome, eight has a special meaning in our story. Eight is significant.

The significance of Julia turning eight is traced back to a moment when Julia was just 9 weeks old and we met with a genetics counselor at Children's Hospital to discuss the findings of her chromosome testing. 

"She has a chromosomal abnormality," the counselor explained to us, "An unbalanced translocation of chromosomes 5 and 6. There are no other documented cases like hers, so Julia will just have to show us what this means for her.  But we have found one case with some similarities, a little girl in Wyoming who developed epilepsy as an infant and leukemia at age 7." 

So, there you go. Two lines in a medical text book - epilepsy and leukemia.  That was the extent of the prognosis they could give us for our precious 9 week old baby girl. That was all the detail available to equip us as we faced the rest of our lives. 

I left that appointment and tried to tell myself Julia was not the little girl in the book, that their differences were as significant as their similarities and the information in this medical text book did not sentence Julia to follow her same path. I tried to tell myself this, but then Julia developed epilepsy as an infant and it became a little harder to believe that "Leukemia at seven" would not be our story as well.

We've done our best in the past eight years to live life fully - growing and developing and at many times blossoming right along side our girl. Learning from her about how to take life one moment at a time and to love each moment for what it is, not what it could or should have been. We've let go of expectations and focused on celebrating the lives we've been given. Julia has taught us this. Julia lives without fear. And I think we have done a pretty good job at this living and loving thing - and we've worked very hard not to let fear cloud our joy. 

But if I am totally honest, "Leukemia at seven" never left my memory. It lingered in the back of my mind, poking my peace and fanning unwanted fears, especially as seven grew near. I would google leukemia symptoms anytime Julia seemed a little off. I'd read up on all the warning signs, especially the rare ones. I'd ask doctors to run tests - just to make sure I didn't miss it's arrival.  One doctor asked me "Why the concern about Leukemia?"  I looked at her as if the answer was so obvious, "Because it was in the book!" As if she knew which book I was talking about. You, know, THE book. The book that told me this could happen to Julia - it's in that book - so can you just do that blood test please?


And now, here we are, and eight has arrived! And it feels significant, like we've made it to something big or past something big. And even though I know that nothing has actually changed over night, that Julia hasn't magically become safer than she was when she was seven, it still feels big. Nothing changed for Julia, but something changed for me - my narrative has shifted, some burdens have lifted -  and that makes this one day pretty darn powerful. That makes this one day worth a big celebration!

Yay for eight! 

Eight is great!

Yee-haw!!!!
















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Friday, June 26, 2015

Guest Post: Macey's 3rd Day

June is always a contemplative month for me. Julia's birthday and the due dates of our other two girls, Joy and Pearl, all fall within June, and I always find myself reflecting on the significance of small moments and single days that fundamentally shift the course of our lives.

Days that make us and break us and make us again.

I imagine that at the end of our lives if we are given the time to reflect, our reflections will consist of a handful of days which built the framework for the rest of our lives to exist within.

It was during this time of reflection that I was reminded me of a beautiful essay my dear friend Arlene wrote several years ago about her daughter Macey and one of these significant days. I asked Arlene if I could share her essay here and she graciously said yes.

I'm so honored to share my dear friend's writing. I met Arlene Thomas 10 years ago in grad school, where we were both studying to become marriage and family therapists. She is one of my dearest friends and someone I have looked to often over the years as a model of how to live beautifully with pain.

This is for all of you who can appreciate the restorative power of one single day. Thank you Arlene, you are one of my heroes and I love you!

~~~

            On the third day of my daughter Macey’s life, I was reborn.  For many new mothers, the third day of their baby’s life might pass in a blur.  Those first days blend into one another under the fog of sleeplessness and awe.  For me, Macey’s third day stands out as one which fostered a renewed sense of hope.  It was a day I was scared to dream about yet anxiously awaited.  With so many days full of enormous emotional meaning, it is difficult to pinpoint the most important day of my life.  But in many ways, the third day of Macey’s life was a day of rebirth for me. 

Macey was not our first child.   Her big brother, Micah, was born two years prior.  When my husband, Ben, and I got married we had a master plan for our lives.  We knew we wanted kids, two to be exact.  We both wanted to complete graduate school and be married for five years before starting a family.  After we checked these milestones off our list of things to do, we expected to get pregnant in a timely manner and live happily ever after. 

Right on target, I finished graduate school, and we celebrated our fifth anniversary while I was pregnant with Micah.  We imagined the countless ways he would be integrated into our family.  I thought about what outfits he would wear when I took him on his first outings. I envisioned taking him to his first baseball game.  I dreamed about family gatherings where we could show off our beautiful little man.  After a smooth pregnancy and birth, we welcomed a healthy little boy into our family.  We were elated with our son and were so excited about carrying out our new roles as parents. 

Tragically all the hopes we had for our future with Micah were shattered in an instant.  Micah passed away unexpectedly in his sleep the morning he turned three days old.  We later found that he had died as a result of Sudden Infant Death Syndrome, a mysterious phenomenon that remains a medical mystery.    

As the initial shock wore off, the pain I felt in losing Micah seemed to touch every aspect of my life.  Eventually, all the clothes we had bought, washed, and sorted for him had to be packed up along with his completely furnished and decorated room.  Unused supplies were either returned or stored. 

During this time, I also slowly began to recognize the innumerable ways in which Micah’s life had impacted mine.  In this, I began to see how much Micah had taught me about unconditional love.  Although he was no longer physically with us, our love for him only continued to grow, showing me how powerful love can be.  Having given my love to Micah so freely, my heart was broken beyond description.  After his death, I was unsure if I would emotionally ever be able have another child or to love another as much as I loved him.  However, the time Ben and I were able to share with Micah made me realize how terrifying it can be to love so deeply and yet how much we wanted the chance to have another baby and be parents in the “normal” sense of the word. 

Six months after losing Micah, we started “trying” again.  With this decision, we knew there was the possibility of experiencing great joy and a renewed sense of hope, but there was also the chance for tremendous hurt.  A few months later, we were cautiously elated to learn we were pregnant again.  Although at first I was afraid of connecting with this new baby, I also felt like Micah’s little sister or brother deserved that same unconditional love we gave him.  I also wanted to appreciate every second I had with our new baby, realizing each moment was a gift.

Nearing the end of the first trimester, we went in for a regularly scheduled doctor’s appointment.  After weighing in, having my blood pressure taken, and getting measurements of my uterus, everything looked great.  However, minutes later our doctor was unable to find a heartbeat.  At that moment, it felt like our hearts stopped beating as well.  We had lost another baby.  Through testing, we were able to find out that we had a little girl, who we decided to name Morgan.  My mending heart was once again crushed. 

            Despite all the grief we endured, our desire to have a baby continued to grow.

           Three months after losing Morgan, I was pregnant again, this time with Macey.  From the beginning, I was both wrought with fear and overjoyed with every moment we had with her.  Every time I threw up, every bout of heartburn, every pound I gained reminded me this was exactly where I wanted to be. Every heartbeat I heard and every kick I felt was life affirming. 

          During Macey’s pregnancy, I literally took life one day at a time.   I never knew how to answer those who asked how I was going to decorate the nursery, what method of childbirth I was planning, or where I had registered for gifts.  Those aspects of pregnancy and parenting seemed so inconsequential in light of the truth I knew: I wasn’t promised a future with this baby.  What I did have was the present and that is what I focused on.  

As days turned into weeks and weeks turned into months, I was forced to start planning for my baby’s future.  I had to pre-register with the hospital for my delivery.  I had to research insurance plans.  I had to choose her future pediatrician.  With every plan I made, I feared having to go back to undo each of them if we lost her. 

One week before I delivered, we hadn’t even bought any supplies or clothes for our little girl.  We finally decided to buy only the absolute essentials.  It amazed me how buying a five pack of onesies felt like a new level of commitment to believing in Macey’s future.

The day I gave birth I had such mixed emotions.  Between missing Micah, wondering what it would have been like to have Morgan, and anxiously anticipating the birth of Macey, I couldn’t help but wonder if my faith in hope could be renewed.  When at last I saw and held Macey for the first time, I was in awe.  She was here.  She was healthy.  She was beautiful.  There was relief in finally being able to see her, along with continued fears that at any moment something could go wrong.  There was a nagging realization that we would never truly feel like we were out of the woods. 

Knowing that many of our friends and family never got the chance to see Micah, there was a sense of urgency in our desire to have those closest to us meet Macey.  I started to memorize all of her features and yearned to get to know her as much as possible.  Every hour seemed like a lifetime of opportunity to spend with her.  My husband’s family had come into town for the birth and planned on staying through the following week.  The only way Ben and I were going to get any reprieve from our fear was through knowing that someone would be holding and watching Macey around the clock. 

Somehow we made it through Macey’s first two days of life.  But there was also a sense of foreboding as her third day came near.  At the time, it was too scary to acknowledge our fears out loud, but we all felt the day’s brooding approach.  Knowing that I desperately needed to get some sleep, Ben’s parents offered to stay up with Macey during the night shift that would lead into the ominous third day.  That night, as I tried to force myself to sleep, I kept my mind occupied with anything other than the fear that loomed just below the surface.  Somewhere in between distracting myself with thoughts of paint colors for our bathroom and what I wanted to eat the next day, I was able to fall asleep.  Amazingly, I slept soundly until Ben’s mom woke me up for Macey’s next feeding.  I looked at the clock and it was 4 am.  It was the next day.  It was Macey’s third day.  She made it through the night!  We made it! 

That morning, as I joyously fed Macey, I thought of Micah and the heartbreak which began on what should have been his third day.  I thought of the lessons on life, love, and gratitude that were instilled in us through his short life.  I looked down at my beautiful little girl, Micah’s little sister, and recognized seeds of restoration.  Restoration in acknowledging my own capability to be a parent.  Restoration in my hopes for the future.  Restoration in my ability to acknowledge my fear and pain while at the same time allowing those experiences to guide me to recognize the gift of life.   



My dear friend, I love you so!