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Staying Home

I think I owe some of you an apology.

When our quarantines were starting around the country a few weeks ago, I heard so many complaints about staying home:

“This is awful, I can’t wait to go out!”

“I am miserable at home.”

“I can’t wait until this is over, I can’t stand being stuck at home.”

I was 100% judging those people.  Like, “What’s your deal?  If staying home is saving just one life, then stay home and quit complaining!”

Then I realized: those people (maybe you, even), they’re new to this “social distancing” gig.

Us special needs parents – we have been social distancing for years.

For us, it started when my youngest son (now 6 years old), was about 6 months old.  Any time we went out – even to the grocery store – he screamed bloody murder. 

So we started taking turns going to the grocery store – one parent went shopping while the other stayed home with the kids.

He absolutely couldn’t go into a restaurant.

So we only went through drive-thru’s.

Then it was hard to go to church, because he wouldn’t sit, and he wouldn’t be quite.

We would sit on the floor in the back corner of the church – away from everyone else – so he had room to move around and so that we wouldn’t bother anyone else. Then we stopped going to church at at all.

He didn’t understand social rules – like waiting in line to go down the slide at the park.

So we got a slide at home.  No need to “go out” to play.

Our family has been perfecting “the social distance” for 6 years now, and this is our normal…..but I remember a time when it was so, so excruciatingly hard.

All I wanted to do was go out to eat with my friends – they could all take their kids out, but mine couldn’t….so I didn’t go.

All I wanted to do was take my kid out to the grocery store – but it was too much for him….so I didn’t go.

All I wanted to do was have some adult interaction during the day….but I was home with my two toddlers who couldn’t talk, couldn’t tell me what they wanted/needed.  We were living with autism years before it became official….and those were difficult years.

So if you’re having a hard time with all of this quarantine/social distancing/staying home….I get it.  I used to be you too.  When this is your new normal, it takes some time to adjust.

In time, though, you’ll find the good in being home:

-spending precious time with your kids that you just don’t get in the busy hustle and bustle of every day life.

-a slower pace that allows you to enjoy the little things – like taking an evening walk with your family and just watching the blades of grass blow to and fro in the wind.

-alone time to truly reflect on what is important to you….I would almost bet that the most important thing to you is your family….and guess what? I think you’ll find the other stuff just isn’t as important as you once thought it was.

So when COVID-19 isn’t as big of a threat, when quarantines are lifted and stores open back up – just remember – there are special needs families that will continue that social distancing indefinitely.  Quarantine and social distancing are often a part of their lives forever.  Remember that.  Remember them.  Check in on them.  Visit them.  Pray for them. 

Maybe, just maybe, this time of social distancing will help people understand just a small piece of the special needs world and the life many of us live all the time.

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Then I Read the Letters

At church this morning, one of the teenagers came up to me and said, “Deidra, this is from the youth group,” as he handed me a gift bag.

I wasn’t really sure what it was, because I haven’t done anything with or for the youth group.

I opened it, and realized that this was a “do this at home because you’re gonna cry” gift. 

The youth group kids had written me letters.

I have been really open about this – church is often a struggle for us.  We don’t go to a really loud church, so when Colin gets loud, we stand out.  Church isn’t really a place that you want to stand out.  You want to go, sit quietly, listen, and leave.  Well, sometimes we do a lot of running.  Sometimes we jump off the alter.  Sometimes we try to play the piano. Sometimes we try to get into the waters of baptism because, “Look, how cool?! They’ve filled a bathtub for me to swim in!” Sometimes we run down the aisles yelling, “Help me!” (That last one definitely happened today because my husband and I had him cornered…it was kinda funny.)

Honestly, I *almost* didn’t go this morning.  The last few weeks, we have had to leave early because it was just too much. I thought, “Maybe we should just stay home.”  But we didn’t, we went.  Something was telling me that we needed to go.  But as usual, when Satan tries to stop me from going, I go and get a big blessing – like these lovely, encouraging letters from the youth group.

To the youth leaders who instigated this – and the youth who wrote me letters – you don’t know how much this meant to me.  In our world, sometimes it feels like we stand out a little too much, we create an unwanted scene…other times you wonder if you’re invisible because no one can really understand it.

To me, this is what inclusion and acceptance looks like:

Acknowledging someone’s differences and loving them because of it and not despite those differences. 

Knowing that, just because someone doesn’t fit the mold, doesn’t mean they are less than or unworthy.

Understanding that every unique individual is God’s creation and welcoming them just as they are.

Because isn’t that what church is all about anyway?  Knowing that we all come, broken and undeserving, yet God loves us anyway?  Jesus didn’t just love the people like Him – He went out of his way to be with the people who were looked down upon in His time.

I am so thankful for a church family that sees the wonderful, silly, sweet, always-free-to-be-himself little boy that I know and love…and chase all over the church building every Sunday morning.

Youth Leaders and Youth parents – you should all be very proud of your kids.  You’re doing a great job raising some really awesome human beings.

Youth Group – thank you for being The Light for me this morning. 

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The Power of Yet

Labels. Levels. Test scores.

If your child has special needs, you’re probably pretty familiar with all of those things.

I’m here to tell you this: don’t let labels, levels, and test scores define your child.

Reading those test scores, it can be heartbreaking if you let it.  Seeing norm-referenced scores that basically tell you, “Hey, your kid is way behind their same-aged peers,” it physically hurts your heart.

…but I have advice for you.

Your child isn’t just a number.  Those scores and labels and levels – don’t let them hold you back.  Don’t see those things as a final destination – but rather – a starting point.

I think it’s all about perspective, really.

They can’t talk…yet.

They can’t sit at the table…yet.

They can’t play with their siblings…yet.

Yet.  So much power in that teeny, tiny word. 

I’m not saying that every single kid out there will talk – because some won’t – but we have to have hope.  We have to try, encourage, and hope.

With time, you learn that your child is different – and that’s okay.  So they don’t do things exactly like their same-aged peers….so what?  That doesn’t mean that they’ll never do it…they just have their own timetable.  I’ve learned that comparison truly is the thief of joy.  We all get caught up in it from time to time, but don’t stay there. 

So encourage your kids.  Help them.  Believe in them.  And remember the power of “yet.”

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A Poem

I’m thankful for you, my Little One.
The day you were born, my heart grew a ton.
I knew you were special, yes, right from the start.
You were ever so perfect, like a great work of art.

As you got bigger, things were hard for you.
You struggled with things that were different or new.
You cried a lot and that made me sad,
I didn’t know how you felt, but I guessed it was “bad.”

You couldn’t tell us what you wanted, I’m sure that was hard.
You tried to run a lot – you almost needed a guard!
Sleep was tough too –
for both me and for you.

You have autism, that was the answer.
That was the reason for your unique manner.
That diagnosis changed someone, you see,
but it wasn’t you, Little One, the one who changed was me.

You have taught me so much and changed my perspective:
I’m now more patient, understanding, protective.
I know you aren’t broken, you just need more help –
You’re sweet and you’re smart – the whole world can tell!

I know that you need a little more time
to learn how to play, to read, and to rhyme.
I’ve learned to be patient and go at your pace,
because your way is perfect, and life isn’t a race!

Through you I’ve learned that we can’t compare –
everyone is different – from our our toes to our hair.
No one is the same, no two lives alike –
That’s not reason to cry, it will all be all right.

It is my job to look out for you,
I’ll fight any battle – I promise that’s true.
I’ll make sure that you have everything you need.
I’ll support you and help you and follow your lead.

You’ve worked so hard and you’ve come so far.
You’re not a regular kid – you are my Superstar.
You learn new things and blow me away.
You’re amazing and wonderful, I just have to say.

You’ve brought me joy in so many ways,
and for that, all I can do is to give God the praise.
He knew that I needed a child like you-
one who is changing the world (from my point of view).

(c) The SLP Mom
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Gifts

My Sunday School class is doing a study on Francis Chan’s Letter to the Church.  In learning about church leadership, and we took a spiritual gifts assessment. 

I’ve taken similar tests over the years, and I always come up with the same gift: teaching.  I do enjoy teaching, so I figured that I’d get the same result again this time.  Here’s what I got today:

Exhortation…I can’t say that I’ve ever gotten that one before…to be completely honest, I had to Google what it meant. 

Exhortation: The gift of exhortation is the divine strength or ability to strengthen, comfort or urge others to action through the written or spoken word and Biblical truth. 

I have to say, I think this hit the nail on the head.  Reading through the descriptions of my “Top 5,” these really speak to me and my place in life right now.  I started this page in order to share our story and encourage others in their own autism journeys.  I truly enjoy reaching out to others who are going through the same things I’ve experienced, whether that is infertility or special needs parenting.

If I’m being completely transparent, I have considered shutting down my page and not writing anymore.  I often let the negative comments – being called an “ableist” and a “martyr mom”- I let it get to me.  I wonder why I share, why I’m so outspoken, and why I keep doing it in the face of such a negative, hateful world.

Then I took this test this morning and realized:

I do this because God can use my words for a purpose bigger than my own understanding.  

Then the pastor spoke this morning on trials.  We go through things in life – sometimes things that we cannot understand – but we know that God has a bigger purpose in it.  Our faith is showcased during the hard times.  I’ve always said this, and I’m now realizing that it’s a gift I have:  I can look at a bad situation and see that there is a greater good in it. I can see the little details – the smallest connections – and know that God had His hand in it.  I can see how God works out everything for the good.  

I can find the purpose in the pain.

I know that God is glorified when we turn to Him in our darkest times.

I understand that I can use my story to reach others.  

I see that I am encouraged by others who share their stories, so I, too, can be an encouragement to others.  

I guess I’m sharing this to say – I’m human.  I get down sometimes, and I think about quitting…but then I realize that writing – and connecting – with others is truly a gift….and I can’t waste that.  

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He’s Happy

I’ve been thinking a lot lately about how different our lives are today than they were two years ago.

Things are happier now.  Easier.  In fact, I almost forget just how difficult it was two years ago.  Then something happens and I’m reminded of just how far we have come in this autism journey.

So what changed from then to now, you ask?

ABA.

If you’ve followed our story for any length of time, you’ll know that I could go on and on about all the wonderful things that ABA has given to Colin and to our whole family.

I’ve been accused of being an “ableist.”  An ableist is someone who thinks that people who have disabilities are somehow less than and need to be fixed.  I’ve also been accused of being a “martyr mom,” meaning that Colin’s autism is all about me, my feelings, and how I am affected by it. 

I don’t think I’m either of those things, but because my son is in ABA, many think I’m trying to change him.  To make him fit a certain mold that society would want him to fit in…but that isn’t true at all.

I just want to help him be the best he can be.  I want him to be happy…and you know what?  ABA has helped him be happy. 

If you had met Colin two years ago, you would have thought that he was an angry kid.  Always screaming.  Upset.  Crying…because he was frustrated.

Once he got his AAC device – and had a way to communicate – he changed.  He is the happiest kid (98% of the time…he’s still human, after all!).  ABA has taught him how to learn, and he’s so much happier for it.

So you see, I’m not trying to change him.  I’m not trying to make him someone he isn’t.  I don’t want him to be a different person.  I just want him to be happy. 

My husband and I had the privilege of hearing Dr. Temple Grandin speak this week.  We spoke with her for a minute about Colin.  She said, “If you’re seeing progress, then you’re doing the right thing.”  She spoke about giving autistic people opportunities to do things.  Expose them to new things, let them try and do things for themselves.  You’ll never what they’re capable of until you try. 

Exposure and opportunity lead to growth.

And that’s really all we want for our son.  We want him to have every chance to be successful in this life.  When you learn a bit differently, it takes more effort and time to learn, so dedication is needed.  And I don’t mean just dedication from Colin – I mean from our whole family.  Because he needs us – and we have to do everything we can to help him. 

We aren’t trying to change him to meet the world’s standards, but we know that the world isn’t going to change for him.  So we have to help him navigate this life.  We are so proud of him and are so very thankful for the happiness that we now see in him. 

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When the Tears are Happy Ones

When your child has special needs, there are a lot of hard things that come with that.  One of those “hard things” is seeing their difficulties spelled out in a report.  Seeing standardized scores is literally looking at a visual representation of your child’s struggles.

When Colin received his official autism diagnosis, just reading those numbers physically hurt my heart.  I knew he was behind.  I knew he was struggling…but to see it on paper made it real.  Official.

Two years ago, Colin was diagnosed with Level 3 Autism Spectrum Disorder.  According to the DSM-5, this is the most severe form of autism and requires very substantial support.  

I’ll never forget the exact wording:

autism spectrum disorder, requiring very substantial supports for deficits in social communication and substantial support in restricted, repetitive behaviors, with accompanying language impairment – no speech.

His prognosis was described as: Fair with intervention.  Without intervention poor. 

If that isn’t heartbreaking, then I don’t know what it is.

…but he did get intensive intervention when he started ABA about a year and half ago.  We had his six month review yesterday – and I always look forward to those meetings.  I see his progress every day, but I love getting to see his progress on paper.

This kid is amazing.  To see his progress just floors me.  To know where he was two years ago…I never would have expected this much growth in such little time.

It’s not that I didn’t believe in him, because I did.

It’s not that I didn’t hope, because I did.

I just had no idea what to expect.  I didn’t know just how far ABA would take him, but let me tell you, my expectations have been met, exceeded, and truly blown out of the water.

As I looked at his most recent testing results, I cried.  (I know you expected no less).

I cried because I was so daggone proud of this little boy.  You’re always proud of your kids, but when you know that your kid has to work ten times harder than everyone else, his victories are just a little sweeter.  
I cried because I was relieved.  Two years ago, I was terrified.   Looking back at his first assessment results brought back all of those memories.  My mind was flooded with those thoughts and feelings I had in his younger years.  Would he ever learn?  Could he learn?  I honestly didn’t know. As a concerned mama, I was drowning.  I felt like I was failing my son – I knew he needed more than I was giving him, and that’s a heavy load to bear.  It sometimes feels like those “hard years” are a distant memory.  I almost have to stop and remind myself, “Oh yeah, he used to do that…or he didn’t do that.”  He is a different kid today. 
I cried because he is defying the odds.  Autism can be scary and hard, but he is excelling and thriving.  His prognosis was fair with intervention, but I am here to tell you that he is surpassing that prediction.

I cried because I am so thankful for his ABA team.  Their hard work and dedication to his success and happiness is truly an answer to my prayers.  As his BCaBA said, “This is a life changed on paper.”  I couldn’t have said it better myself. Team Colin, you’re changing his life.  I really hope you know how much it means to our family.  Your work has set him on a new path – a journey to becoming the best possible version of himself.  In my eyes, he is a success story, and you all have been a ginormous part of that.  Without your help, he would be in a completely different place today.  You are honorary members of our family (like it or not!).

I cried because his life has been changed.  Two years ago, there were so many things he didn’t do.  So many questions and concerns and worries.  So much frustration…and lots of screaming and crying.  Today, you’d never know that he used to struggle like that.  Not that it is all rainbows and unicorns, but it is a night-and-day difference.  

I cried because I remember the days that I prayed for this. I prayed for him to communicate.  I just wanted to connect with him.  I wanted him to be happy.  I wanted him to play with his brother.  I wanted to help him, but just didn’t know what it was that he needed.  ABA has been the answer to my prayers.  After years of begging God to help him, He led us to the most amazing ABA clinic.  Our journey to these most wonderful people was not just coincidence, but divinely planned, I’m sure of it.

I cried, because I know just how blessed, fortunate, and lucky we are to have this intervention for Colin.  He is one of the few kids in our state who has access to this life-changing intervention. Fewer than 10% of the autism population here has access to ABA, and that fact isn’t lost on me.  My heart breaks to think of how many children could have the same successes if only given the opportunity. 

I know that many people believe that ABA is controversial, but good ABA? It is life-changing.  We aren’t trying to make Colin “not autistic.”  He will always have autism.  No, we are trying to help him.  Support him.  Set him up for success. Prepare him for life.  We are meeting him exactly where he is and will continue to encourage and push him to even greater feats.

Colin, you are one amazing, awesome kid. You are going to change the world, Stink.

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Do You Ever Wonder What It’s Like to Have a Nonverbal Child?

Do you ever wonder what it’s like to have a nonverbal child?

If you’re a parent, think about your child.

Think back to their first words.  Those long-awaited “Mamas” and “Dadas.”

Within a few months, they’re using dozens of words.  Naming their favorite people, snacks, and toys.  Participating in social games and saying “bye-bye” when people leave.

The next thing you know, they’re putting words together.

Then come the questions:

What’s that?

Why?

Mommy!  Mommy?  Mommy?!  (“Mommy” is then multiplied by 4,000 times each day.)

Suddenly you have this little toddler who talks all day long. Questions.  Requests.  Comments.  More questions and more “Mommy’s.”

You get to hear about their favorite books and favorite tv shows.  You know about their favorite colors and favorite toys.  You have tea parties, and you know all about their stuffed animals and their thoughts too.  (Because toddlers have this gift of communicating with and interpreting for their toys, in case you didn’t know.)  You hear all about their day.  You hear them say, “I love you.”

Then they start school.  You get to hear about what they are learning and who they played with at recess.  You get to hear about their lunch and whether they liked it or not.   You get to know their thoughts and help talk through difficult things with them, like death and bullies.  You get to talk with them about the exciting things too, like new friends and fun games.  You hear about the latest trends and fads and music and….well, everything.

Now, imagine you never got to hear any of that.

No first words.

No “Mama” or “Dada.”

No “Mommy” 4,000 times a day.

No “I love you.”

You don’t get to know their favorite color or hear about their day.  You don’t get to know what they’re thinking. You know they have questions, but they can’t ask them.

Imagine a world where you lost all of that with your child.  How much would you want to know about them?  Wouldn’t you wonder about…well, everything?  That’s what it’s like having a nonverbal child.

For many parents, this is their reality.  Many never even get to hear their child’s voice.  They know their child has things to say, but they can’t talk….so their thoughts and feelings and words stay in their own minds. 

Now imagine being the child who cannot speak.  How frustrated would you feel?  How much would you wish to communicate if given the chance?

October is AAC Awareness month, and I want people to know just how life-changing AAC can be.

Pictured: iPad with PRC’s LAMP Words for Life

Augmentative Alternative Communication (AAC) can give a voice to those who cannot speak.  Being nonverbal doesn’t mean that you have nothing to say – it just means that you need another means by which to express it.

My son’s use of an AAC device has changed his life.  Communication is so powerful, and it opens up the world to us all.  Yes, AAC has given him the ability to communicate with us, but do you know what else?  It has given us the opportunity to get to know our son in a way that we couldn’t before.

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Who Will Love Him When I’m Gone?

I had a conversation with my mom last night.  It was something that I think about every single day, but rarely say aloud.  It was a topic that – for my sanity and survival purposes – I have to push to the back of mind.  It is always there, but for now, I can’t let it dominate my thoughts or else I’d drive myself crazy with worry:

Who is going to take care of Colin when we are all gone?
If your child is typical, you plan to raise them for about 18 years.  You don’t cut ties with them by any means, but they will go on to live their own lives.  They can take care of themselves, be independent, and not really need you like they did as a small child.
My son has autism, so I don’t really know what his future holds.  We expect to be taking care of him our whole lives.  I will take care of him as long as I can.  
But what happens when I die?
He’s five.  What parent of a five year old is worrying about what will happen to their child when they die?  A parent to a child with special needs, that’s who. 
Our children need us.  To help them, protect them, keep them safe.  To make sure they’re fed.  To assure that their most basic needs are taken care of.  You wonder who will step up and do all of these things for your child, but the real question is this:  
who else will love him as much as we do?  
My mom said, “He has Finley.  Finn will take care of him.”
I think about this so often.  It is so huge to ask a sibling to care for their brother or sister when you’re unable to do it yourself.  You hope and pray that they want to, but to ask such a thing?  That is big.  
Then, we went to church this morning.  As we were walking through the parking lot, Colin took a quick little step ahead of me…Finley immediately grabbed his arm, without me even asking him to.  He held onto his arm the whole way.
When we got inside, Colin took off running up the stairs…Finley was right behind him. 
When we got up to the sanctuary, Colin started to crawl under the pew. After the prayer, I see Finley down there too…he said, “I was just trying to get Colin.”
During children’s music, Colin was sitting in the back corner seat, alone.  Finley turned around, saw him, and immediately got up and went to sit with him.
I tell him all the time, and it’s true: he is the best big brother in the wide world.  Colin has no idea how blessed he is to have such a big brother.  
People see Colin and they know that he has autism.  What they can’t see is how much his autism affects his brother.  Finley has always been an old soul, and I think it’s because God knew that he would have a great responsibility as Colin’s brother.  One days like this, I look at Finley and know – I don’t really have to worry about who will love Colin when we are gone…because his big brother already loves him that much too.  
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October is Pregnancy and Infant Loss Awareness Month

My birthday was this week, and every year, Facebook shows me one of my most favorite pictures ever: 

I was 28. (and still looking young, I might add.  Oh, children who didn’t sleep for 5 years, how you’ve aged me!)

Finley was 7 months old.

I was 18 weeks pregnant with Colin.

(My husband-slash-photographer was 29…I always have to remind him that he is – and always will be – older than me.)

I remember this phase of my life.  I was showing already (second baby problems!), and many strangers had a lot to say:

“Wow.  You’re gonna have your hands full.”

“Pretty close together, don’t ya think?”

“You do know what’s causing that, don’t you?”

“Oh man, two boys?! Will you try again for a girl?”

What those people didn’t know was this:

I had suffered from infertility.

I was told that I wouldn’t be able to have babies.

We had to do fertility treatments.

Our first pregnancy was ectopic and required emergency surgery.  I had seen and heard my baby’s heartbeat before I went into surgery to terminate the pregnancy because my life was in danger.

Our IVF cycle gave us three perfect embryos.

We lost two of them.

Those were hard times for me.  Everyone had advice during our times of infertility and loss, too:

“You’re trying too hard. It will happen when you stop thinking about it.”

“You should just adopt. My neighbor’s sister’s friend’s cousin’s hairdresser adopted and got pregnant the next month.”

Then when we lost our first baby:

“It’s for the best. There was something wrong with that baby, that’s why that happened.”

“It just wasn’t meant to be.”

So to those strangers who had advice and comments for me, here’s what I want you to know:

When someone goes through infertility, it is real…and it’s real hard.  Medical issues are just that – they aren’t things easily resolved by “just adopting.” (Which, Come on, there is no “just” to adoption.  It is a big deal.)  Unless you’ve lived it, you couldn’t possibly understand, so there is probably very little you can say to “help.”

But you know what you could say?

“I’m sorry.  That must be hard.”

When someone loses a baby, no matter how far along into a pregnancy, it is awful.  They’re going to be sad, angry, frustrated, bitter….that’s normal.  Writing it off as, “not meant to be…” well, that hurts.  That was their baby.  Their loved baby.  Their missed baby.  Just know that. They’re going to be sensitive to others’ pregnancy announcements.  Know that too.  They aren’t bad people, but they are hurting.

People looked at me with a seven month old and almost five months pregnant and thought I was nuts.  Well, in all honestly, Colin was not planned at all.  I was infertile, remember?!  Yet God has a sense of humor and here he is.

Here’s the other thing that people didn’t understand:  I felt so blessed to have my perfect little baby boy.  For the longest time, I thought I’d never have a baby, so when he FINALLY came along, I was over the moon. 

Then to find out that he would in fact get to have a sibling?!  Wow.  That was awesome.  I’ll admit, I was a little scared and worried because Mr. Finley was a horrible sleeper (and Colin turned out to be even worse than his big brother).  I was exhausted and wondered how I would do this with two babies.  I knew it was going to be hard, but all the good things in life are. 

I still look at those boys now -big 6 and 5 year olds – and I’m so thankful for them.  Infertility changes you.  Infertility shaped me more than anything ever had until that point in my life. There is something about being told you’ll never have children – to then have the two most beautiful and perfect little boys ever, well, it just makes you appreciate them that much more. 

Finley & Colin

I am very open about our fertility struggles because it can feel so isolating.  I want to let others know that it’s okay – you are not alone.  I love that saying, “share you story because it will one day be a part of someone else’s survival guide.”  I wholeheartedly believe that – we need each other for the hard stuff. 

I am 1 in 8

I am 1 in 4