The Sad Ones

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

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

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

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

My friend saw sad.

~~

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

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

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

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

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

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

Regarding the compliments, I am grateful for them and humbled by them. I know they are being given in kindness, but I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something. 
  
And the same goes for the opposite. When I am not those positive things (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed - I am those things by my own doing - with or without Julia. She is not to be blamed.

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

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

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

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

In her memoir, Lena Dunham wrote this in response to people praising her: 

 It's not brave to do something that doesn't scare you.

This is how I feel about my life with Julia. I'm not being brave, she doesn't scare me.  

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

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

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

So friends, will you promise me something?  

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

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

And that will be the truth.

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

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

1. Best decision ever!

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

3. Every day little lady, every day!

4. Even more so!

5. Yes you are!

                           

6. Julia, you are the most fun!

7. Well, obviously!

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

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

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!!!