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.