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)

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!!!!

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

Dear Julia, You Are Not the Problem

Dear Julia,

I read a post last night when I was trying to fall asleep written for parents like me, parents of extra special kids like you - and what I read really bothered me because it seemed to be saying that life is really really hard for people like me because of kiddos like you. I read it twice and then a third time to make sure I hadn't read it wrong or missed the point (I do that sometimes), but again and again and again what I heard most of all was the author saying how hard life is because of kids like you. 

And, well, that didn't sit too well with me babe, so I had to speak up - because while the author may have been speaking for himself, he absolutely, 100% does NOT speak for me. 

Yes, life can be stinkin' hard - but Jules, I pray you hear this one thing from me if nothing else - the hard in life is NEVER because of you.

You, my love, are never the problem. 

Neither are you the battle. 

You never cause me to feel embarrassed, defeated or done. Other parts of life do that for sure, probably a little too much lately, but never you. You are not my hard part, you are not a problem I endure.

Like most people, there are things in my life that sometimes make it hard for me to want to face the day... Some days my problems come in the form of work stuff: Meetings, deadlines, reports I don't want to write, and paperwork I'd rather not review.

Sometimes it's relationship stuff: A fight with your dad I don't want to apologize for, a misunderstanding with a friend that turned into a 6 month standoff, hurt feelings and unspoken resentments threatening to boil over in every direction. 

Sometimes it's the stuff in my own head that's been there for as long as I can remember: Insecurities, unfulfilled dreams, 5 extra pounds, repeated mistakes and the mocking voice on replay reminding me: "Still not good enough, still not good enough."  

And on many days, like this morning for example, the battle is with the stuff impacting you. The problems you have to deal with are also my problems. Seizures I can't make stop. Needs I can't meet because I can't understand what it is you need. Systems meant to help that actually feel more like a burden. Fears I'm missing something that might make life better for you, criticism and misunderstanding and hurtful actions from people who don't understand our lives. 

Those are my problems. Those are my hard things.  Those are the "unending battle" things, the "I feel defeated and embarrassed" things, the "I'm kind of at the end of my rope things."

You, Julia Anne, are none of those things. 

You are not my hardest thing. 

Not by a long shot. Not by the longest shot to the farthest galaxy.

And let's be honest, this is not because every single moment with you is blissful and easy and a walk in the park - no, this is because you and the hard things that sometimes happen with you are NOT the same thing.

Seizures are hard, but you are not seizures.

Tantrums are hard, but you are not a tantrum. 

Lack of communication is hard, but you are not refusing to communicate.

Judgement from others is hard, but you are not the one judging.

You, my precious daughter, are not the hard things. In fact, when I look at you the hard things get easier.

So while it is very true that life can be hard, and life can be lonely, and life can feel defeating at times and we all need to hear that we aren't alone and it's OK to feel down...  It is also true that everyone can feel these things, not just parents like me with kiddos like you. Being human is hard. Being alive means we have problems. No one person is the cause of our problems and you, Julia, are not the cause of mine. 

You, sweet girl, are a reason to figure out the hard things and deal with my problems. You are a driving force to be a better me.  You are the source of so much of my happiness and the reason for most of my pride. You've added to my life purpose, wonder and meaning. 

You are my good thing. 
My very best thing.

And if anyone ever claims to speak on my behalf and states otherwise, it is a lie.

Love, 

Your grateful mom

 

How Not to Ask About My Child's Progress

Today we had an appointment with Julia's eye doctor whom we haven't seen in over a year.

I was excited to update her on all the positive changes and developments that have occurred since we last saw her.  It really has been such a great year for Jules.

"What's changed?" she asked and I began to tell her that since we switched medication a year ago the biggest positive side effect has been in Julia's sensory tolerance - she can handle so much more sensory input than before - she seems more comfortable in her own skin and that has opened up a ton of new opportunities for her!

The conversation went on:

Doctor: So tell me about her fine motor development.

Me: (with a big smile on my face) Well, she is touching so many more things than she used to, she will pick up small things with her fingers and she will let her hands touch a variety of textures that used to really bother her.

Doctor: Is she cutting?

Me: Cutting??    (I'm thinking to myself what is cutting?  I work in the mental health field so all I could think of was self-harming. Is she asking if Julia is self-harming?)

Doctor: Yes, cutting. Is she holding scissors and cutting paper on her own?

Me: Ummmm no. No, she's not doing anything like that. (Now I'm thinking to myself what in the world?? Where did cutting paper come from? Did you not hear anything I was just saying to you about what she is doing? Self-harming was a more realistic question than holding scissors and cutting paper.)   

Doctor: Oh, well is she holding markers or crayons and coloring?

(At this point I'm pretty sure my smiley face which had recently turned to a confused face now became a defeated face and my feelings of excitement started feeling more like embarrassment, had I oversold Julia's progress?)

Me: No, she's not holding markers and coloring, she doesn't really do anything like that. I guess when I said she was doing great I just meant for her - not, I guess, what you are thinking of.

(I felt like crying.)

Doctor: Oh I know that, I just needed to get a sense of what you meant by 'doing better.'

Me:  Nod my head. (But I was thinking there are about a hundred other ways to find out what I meant by 'doing better' that wouldn't involve making my positive update feel more like a disappointment.)

~~~

I realize this is not a huge deal, so for those of you already formulating your critique of me and my over-sensitivity, I'll save you the time - I get it, it is not the end of the world that Julia's doctor asked me questions in this way. It's just a little thing - but still a little thing that kind of stung. And sometimes we need to talk about little things. I left that appointment thinking there really does need to be a certain level of awareness and sensitivity when working with kids who have developmental delays and their parents. Their achievements and accomplishments look SO different than typical development, they can seem tiny in comparison to regular milestones, they can get lost in the land of normal - but for the kids and those of us who love them they are monumental, ginormous, incredible, amazing!!!! And so when asking about our kid's progress, I believe there are simple ways to do it that allows the provider to get the information he or she needs without making the parent or kid feel like they are a disappointment or their achievements aren't a big deal.

Instead of asking:
Is she doing _____?

Ask:
What kinds of things is she doing?
or
What new things is she doing?
or
What does she like to do/play with/touch these days?

Questions can be specific to a body part (hands, fingers, eyes, etc...) or a therapeutic skill set (OT, PT, SLP) - but should NOT be specific to an actual activity or task (cutting, drawing, running, talking...). And open ended questions are almost always preferable to closed / yes or no questions. When you ask open ended questions we as parents get to compliment and brag on our child's accomplishments rather than giving attention to tasks currently beyond their ability. And even more importantly, if the child understands the conversation going on around them, questions asked in this way give him or her the opportunity to hear people talking about what he or she IS doing, not about what he or she is NOT doing.  I know which conversation I would prefer to hear.

It's a little thing, I know, but it does make a difference, and if there is one thing I've learned from being Julia's mom it's that little things matter quite a lot.

I'm so stinking proud of Julia and her amazing accomplishments - let's talk about those things!!!

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!

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!