Walking With Drake

One Mother's perspective on autism.
I’ve been binge watching "Call the Midwife" the last few days. Drake likes for me to sit right beside him when he isn’t feeling well. So, I’ve been watching that while he watches his videos. It’s been nice.

One particular episode had a lasting impression on me. Many children born with a disability, way back when, were institutionalized. It wasn’t necessarily that the parents didn’t want the child, it was sometimes because they felt they couldn’t care for him/her properly. In this particular case, the parents felt immense guilt because they thought perhaps they had caused their son’s Spina Bifida. The mother was suffering from depression and the father was at a loss since then it was proper for the mother to care for the child. It was all quite difficult for me to watch, yet I realize that was a different era. 

They planned to put him in a rather upscale institution where he would have been cared for quite well. However, upon inspection and talking to a couple of residents,  the father realized that his son was worth taking a gamble on. He decided that he and his wife could do this and help their son have the best possible life.  To some, gamble, may be a poor word choice but I was rather inspired by that particular word. My eyes filled with tears because sometimes that’s what we do as parents of these different abled children, we take a gamble.

We gamble against what doctors may tell us our children can and cannot do.

We gamble by placing them in the hands of therapists and teachers.

We gamble with which therapy is best or if all the therapy is too much.

We gamble when people ask us the “outcome” because many times we don’t know. We just smile and say “he/she is doing just great.”

We gamble with a society that doesn't understand autism or most disabilities.  We are constantly fighting to help others understand. 

We may even gamble with our own feelings. I can tell you that this is probably the biggest gamble, because our children need acceptance at home before they can get it anywhere else.  

Yet, we continue to gamble.  We do it for our child.  We take risks even when we are scared to death.  I would like to think that most of us gamble with a sense of hope.  I for one have never gambled hoping that my child would be "normal." But rather, I've gambled in hope that he would be the best version of Drake.  Still, it's a gamble. The unknown can be quite scary and some cannot get past that part.  They get stuck in very bad place, much like the mother did in this particular episode.  

I took a chance many years ago, fairly early on, and decided that I would accept autism with my whole heart.  Some may say, that was a huge gamble on my part. That meant learning everything I could, talking to people who are actually autistic, and never expecting Drake to be anyone but Drake.  We've had years and hours of therapy that have done nothing but better him. By better him, I mean help him to be confident in who he is as an autistic child.  I have gambled many times in the last seven years with this child and we are still winning.  I contribute our winning streak to my constant optimism and refusal to allow anyone around him who doesn't hold onto that same hope for him. Does he have deficits?  Of course.  Don't we all?  However, he has proven over and over again that he is an overcomer.  He can and will do great things.  I believe that with the whole of my heart.  Maybe that's a risky gamble, but I cannot imagine living any other way.  I owe it to Drake to always gamble with his best interest in mind.  

It's okay to take risks and step outside of our comfort zones.  Being the parent of an autistic child is not always going to be easy, but what's most important is realizing that the child you've been given is yours.  We as parents need to eventually come to a place of acceptance. We have to put comparison behind.  We have to let go of what we "thought" life would be.  Things may not be as you had envisioned, but that certainly doesn't mean life can't be great.  Remember... there may be bad days, months, or even years....but that doesn't mean you need to stop gambling that there will be wonderful days ahead. 

I cannot tell you how many times I've heard these words since I started blogging and created a Facebook page. Of course, I haven't always heard those exact words, but rather variations.

Autism isn't unicorns and rainbows.

You don't understand severe autism.

You are in denial.

You shame other mothers by being so positive.

You shouldn't judge us because we talk about the hard times.

I don't think you understand autism at all.

I'm glad your life is so glorious, but I hate what autism has done to my child.

These are only a few examples. Sad isn't it? The world we live in has become so harsh that being positive is seen as a failure of sorts. I don't understand such a way of thinking.

I completely understand that autism is not a walk in a field of daisies on a warm Spring day. Our life is not always sunshine and Care Bears. I have never claimed any of these things, nor have I ever objected when anyone stated that caring for an autistic child or adult is easy. Raising children in general is not easy.  When you add in additional needs, destructive behaviors, aggression, self-harm, seizures, and a whole host of other issues that can tag along with autism, the road can seem quite complex and even hard.

However, as simple as it may seem, this is the life you and I have been given.  It is up to us to make the best of it.  I choose to make the best of it every single day.  Ya'll, we have really crappy days.  Some days I do not like autism.  I don't love the fact that it causes Drake to have trouble communicating his needs.  I do not love that it prevents him from doing some things that I think he would love.  But, one thing I don't do is dwell on any of that. I focus on what he CAN do and what he WILL do.  I believe in him and he knows it.  Autism is as much a part of him as breathing.  It is the essence of his personality. I cannot imagine him being any other way.  He is who God intended for him to be.  This is the child I was given.  And honestly, I never once wished for a different version.

My hopes, dreams, and prayers for him are not lost.  I don't look at him with a sense of dread and despair.  I look at him and see so much potential, hope, love, and I cannot wait to see what his future will hold.  This is his life.  His dreams are his.  When autism was introduced to our lives I didn't feel that all my dreams of a perfect child were shattered.  What I did realize was that our path would be different, not less, just different. I made it my mission to get him the help that he needed to be all that he could be.  I want Drake to be the absolute best version of himself. I want to make sure he has all the tools, skills, and confidence to do anything he wants to do.  That is my job as his parent.

I have absolutely no idea what his future holds.  Heck, I don't know what tomorrow holds.  We may be faced with new challenges or we may hit a huge milestone.  The beauty of it all is each day is a new day.  I cannot sit around and dwell on the what ifs of life.  I don't despair over the life we have been dealt, and I am very smug to anyone who treats us as though our life is less.

I don't feel like I'm missing out on life.  THIS is my life. From the moment Drake was diagnosed I had a new purpose, and I gave it my all.  I still do, every single day.

You see, life is all about perspective.  It's about finding joy in any way you can.  Yesterday was not the best day for Drake.  He had kind of rough day at school.  But last night, before bed, he came over to me on the couch and snuggled up beside me.  He covered his legs with the blanket I was using, put his hand on my face and without saying a word I knew he was happy.

My goal in the last seven years has been his happiness.  We have spent countless hours on the road going to appointments, therapies, and school.  Through it all, my main objective has been his happiness above everything else.  While I know that learning skills is important, my focus has always been making sure he is happy.  I have removed him from several situations, people, and places that do not make him happy. I will continue to do that as long as I'm alive.

So you see, when someone insinuates that I am "too positive" about autism, it offends me greatly.  I suppose most people want me to talk about every single challenge we face.  They want me to bare Drake's soul for the world to see.  They want me to explain all the difficulties he has so they can empathize with me and all my hardships in raising an autistic child. They want me to be real, and by real I mean they want me to show weakness.  People, you're in the wrong place.  I will never speak of Drake as if he is incompetent.  I truly believe that one day Drake will read the words I've written about him.  Do you know what he will never read?  He will never read that my dreams were lost.  He will never read that I was embarrassed.  He will never read that my life was ruined.  He will never, ever read that he was anything more than an absolute joy.

He won't read those things because I refuse to put every weakness or difficultly on display for the world to see. I certainly wouldn't want people to do that to me.  Can you imagine if someone started a Facebook page about your life and told every weakness and difficultly you had? Doing it to children is no different. And yes, I will absolutely speak out against anyone who shames their own children on social media.  I will speak out against it because I don't want my son to one day read the words of some mommy-martyr and wonder if I ever felt that way about him.  Please don't misunderstand me.  There is nothing wrong with telling your story.  But if you cannot speak about your children in a respectful way, then it may be best not to speak about them at all.  Autistics are human beings, ALL of them.  They deserve to be spoken about respectfully, no matter their severity level.  You can call me judgmental, a parent-shamer, or any other ugly thing.  I do not care.  What I do care about is the message that many parents choose to put out into the world.  Many times it is a message that shames their children, and in doing so...shames mine.  I will not stand for it.  I will not accept it.

I want a positive world for kids and adults diagnosed with autism.  I want them to be proud of who they are.  The message of autism awareness shouldn't be a crying mother who is in constant despair because her child is different. That is not autism awareness. Awareness is about helping people understand that differences need to be accepted. We cannot expect society to accept our kids when we continually vomit out a message of despair and shattered dreams. Acceptance starts and home, always.

Let me start this blog off with a bang.  If you're one of those folks who hates Autism, this probably won't be the best read for ya.  Then again, I invite you to open your mind up and let go of some of that bitterness.

You see, I've been on this journey with my son for almost five years.  Drake recently turned seven, and he was diagnosed with autism just a few months before he was three. You may think..."wait, that math doesn't add up."  That's because I knew way before his diagnosis that he was autistic.  I'm one of those paranoid mamas and my instinct is almost superpower level in strength.  Folks, I was a literal basket case the first time I ever Googled anything about autism.  Why?  Because I didn't understand it.  So, from the time Drake was around ten months old, until he was eventually diagnosed with Autism around 2 1/2 years old, I was literally a nutcase. In fact, I should probably have a PHD on my wall based on all the research I did those two years.

I didn't tell a soul for several months of my suspicions, not even my husband.  I wanted to make sure I had all my facts straight.  I wanted to understand things myself before I presented the idea to anyone else.  I was scared out of my mind.  I read all the articles about people curing their kids with these magical biomedical treatments and special diets.  I read stories of children who suddenly didn't have autism anymore.  I read about the horror of some therapies. But, one day I stopped reading and had a plan of sorts.  Drake needed a diagnosis and Drake needed therapy, those two things I knew for sure.  I also knew that Drake was always going to be autistic. Always.  There is no magic pill.  There is no special food that will change him.  He is autistic and always will be.  It wasn't very hard to accept.  It was a fact and I accepted it as such.

Those first few months after diagnosis were life-changing in many ways.  I realized I could no longer hold a job and get him the kind of help that he needed.  I realized that everything about my life before was not going to be the same.  Instead of signing up for T-ball, we were signing up for Speech, Occupational, and ABA therapies. It didn't bother me, it just became my mission.  I'm not a baseball or soccer mom...I'm an autism mama.  I eat, sleep, and breath all things autism.  I wanted to know anything and everything about it because it is such a huge part of my son.  I wasn't sad about it, I was determined.  Determined to make sure he received the best care, the right doctors, the best therapists, and more than anything acceptance.

So you see, when people send me videos, articles and thoughts about how to cure my child...I am offended.  Drake doesn't have cancer.  He is not dying.  He is not sick.  Drake is autistic.  His brain works differently, and my friends that doesn't mean he is diseased.

I've found a way to take this bull by the horns and win.  And that way is through acceptance of my son. You see, joy doesn't need a cure and when I look at Drake I see joy.  He is happy being who he is.  You cannot have any joy or peace if you can't accept your child for who they are. I don't care how many supplements you pump into your kid, or how many oils you rub on their body...if that child is truly autistic they will ALWAYS be autistic.  If some medication, supplement, or therapy helps your child then HOORAY!  I'm happy for you and I'm sure your child feels better in their body.

I'm not a cave man.  I understand that some people diagnosed with autism need lots of help.  I understand that autism affects my child differently than it affects a lot of children.  Your child may be higher functioning than mine or mine may be higher functioning than yours.  You know what though?  They are both still autistic.  I'm not envious because my friend's child is higher functioning, their child is not mine.  God gave me this child.
I am in full agreement that some may need special diets or  all sorts of medications and supplements to balance their body  In fact, Drake takes several supplements.  They make him feel better.  They make him feel more at ease.  What they don't do is take away his autism.  I have zero desire to make Drake non-autistic.  If someone showed up at my door tonight and said, "If you give your son this pill, he will no longer be autistic."  I couldn't do it. I don't know what kind of child I would get in his place.  I don't know who he would be.  Maybe that makes me a moron, I don't know.  I just don't look at autism and see it as demonic.
Autism has not stolen my child from me.  Do we have hard days?  Absolutely.  I would love to take away Drake's frustrations, anxieties, and struggles.  But, not all of that is autism.  Some of those things come from co-morbid conditions such as Apraxia of Speech and anxiety disorder.  If someone offered me a magic pill for Apraxia of Speech I would be all over it.  Drake wants to talk.  He wants to verbally express himself.  You may say, "well, whats the difference...if you would cure one, why not the other?"  Because autism makes him who he is. His personality, his quirkiness, his humor, the way he observes things, his honesty, literal thinking,  the way he thinks, sees, and feels are all traits that I love about him and autism. I am not bitter about autism and what it has "done" to my child.  It's who he is, it's part of him.  Taking away autism would take away the Drake that I and so many others love.

One thingI have learned on this journey is to listen to other autistics.  I've spoken to many and almost 100% of them have told me that they are proud to be autistic.  Yes, some of them have other medical conditions that hinder them greatly, but it's not autism they complain about.  And I'll  tell you this, you "cure people" hurt them with your words.  Your words make them feel unappreciated, unaccepted, unloved, and unnecessary.  That's a hard pill to swallow isn't it?  But, it's the truth.

Those of you who want "normal" kids rather than the ones you were blessed with are damaging to the autism community.  Not only that, you are working so hard to fix your kid that you're missing out on some amazing opportunities.

You're missing out on:

Watching the trees in the wind.

Listening intently to the birds.

Being at peace in the forest where there is little noise.

Finding joy in a colorful piece of ribbon.

Noticing the texture of something new.

The way water feels on your skin.

Hearing rain underwater.

Being able to completely ignore people without a care in the world.

Very little interest in the material world.

The simple life.

Loving and being loyal to a select few.

Joy that is indescribable.

All of those things above are things I've learned from Drake.  He is very in tune with his senses and often awes me with things he loves.  More than anything else, I've learned to stop comparing Drake to other kids and just enjoy who he is as a human being.  Yes, I have worries that are far more intense than what normal parents face, but I also have immense peace in knowing that Drake is happy.  I'm thankful that I've always kept that as a top priority when speaking to people about Drake. "I want him to be happy."  That is how I begin any conversation with a new therapist, his IEP team, or a doctor.  His happiness is what drives me. Again, joy doesn't need a cure.  I've chosen to see the joy in this life with Drake.

If you are struggling with acceptance, know this...your kid feels it.  If you want your child cured, even if you haven't voiced it to them, they know.  These children and adults are not rocks.  They understand what you are saying, feeling, and how you portray them in the community.  If you want joy on this journey you must accept them.  They will grow by leaps and bounds once they know that you believe in them  AS an autistic person.

I invite you to accept autistic people.  Help them be all they can be by encouraging them and  helping them along the way.  If I had to guess, they will help you far more than you will ever help them.

This is the question I get asked most often about Drake.

The simple answer is, I don't know.  Along with autism, Drake also has an Apraxia of speech diagnosis.  Apraxia is much more complicated than many people realize.  While therapy is available, it's still somewhat of a mystery.  In short, there is no way to know for sure if the muscles of the mouth and the brain will learn to cooperate effectively. Sometimes they do, sometimes they don't. I will say that Drake has a severe case of Apraxia.  On top of that, Drake is an absolute perfectionist and doesn't want to do much of anything unless he can do it 110%.

Drake was diagnosed with autism at 2 1/2 years old.  At the time, lack of communication was the biggest red flag.  There were also other red flags such as: lack of eye contact, appearing deaf, little interest in toys, odd fascinations, and various aversions.  As someone who knew very little about autism, I was most concerned about his lack of verbal communication. In the last few years, I've learned so much, therefore, my feelings have changed quite a bit.

If you look at the research, statistics, and listen to most healthcare professionals...most of those things will tell you that our time is running out.  The window of opportunity for speech development is rather low at this point.  Drake will be seven years old in another month.  According to "science' the likelihood of him ever being able to communicate is almost at zero.  But you see, I don't rely much on  what "they" say.  I choose to hold onto hope. I'm one of those, "your will be done, Lord."   On the flip side, I'm not in denial about it either.  He may never be able to verbally communicate, and I can say with confidence that I'm okay with that.

Cue the 'gasps.'

Maybe I'm crazy, but it just isn't at the top of my list of priorities anymore.  You see, even if Drake does find his voice, he will always struggle with verbal communication.  At this point of the journey, I have given him as many tools and ways to communicate that I possibly can.  He has always been persistent when it comes to getting what he wants.  He may lead by hand, he points (that didn't come until about a year ago), he knows a few basic signs, and he has an AAC communication device.  All of these things help him to communicate his needs.  Sure, none of these things are as "easy" as verbal communication, but it sure makes it easier for him.  Plus, in this age of technology, he will one day be able to type/text, etc. I'm content with that.

Do I wish I could hear him say "mama?"  Of course I do, and I have a couple of times.  Drake has spoken several words randomly over the course of the last few years.  Mama, Daddy, iPad, Hug, No, Yeah, Yum, and more.  The words are all there. In fact, his receptive language is literally astounding.  He has always been a listener and a thinker.....I think it would be scary if we actually knew all that he has to say.   The thing is, he will be able to tell me one day.  It may not be verbally, but because of technology...one day he will be able to tell me whatever he wants.  It's exciting to think about it.

In many ways, I've learned that verbal communication is overrated.  Drake has taught me so much on this journey, but the number one thing is to listen with more than your ears. He has taught me to be more observant, more patient, and shown me a level of love that I didn't know existed.

When I tell him I love him, many times he will put his face next to mine and nuzzle.  If I ask him if he loves me too, he will reply with a nod and sign, "mama." Ya'll, it gets me every time.  I don't need to hear the sound of his voice to know he loves me....I can feel it.

My hopes and dreams for Drake are so far beyond verbal communication.  What I want more than anything is for him to be happy, gain independence, and continue to be confident in who he is.  None of those things require him being able to verbally communicate.  I'm not giving up hope that he may one day find his voice, but I'm also not going to despair if he doesn't.  One of my goals in this parenting gig is to make sure this kid knows that he is amazing, loved, and capable of anything.  I never want him to think he has failed or isn't good enough because he can't verbally communicate.

So when someone says, "do you think he will ever talk," they may hear a sigh from me...especially if he is in the same room.  I understand their concern, but I am also frustrated because being able to blab out a bunch of words doesn't make you a more complete human being. I wish that people would look at Drake and see more than a deficit.  I wish they understood that he is smart, funny, happy, and content being who he is. To me, those things are far more important than words coming out of a mouth.

Will he ever talk?  Only God knows that for sure.  My job is to love him and encourage what he CAN do and leave the rest to the one who knows.

Every year since Drake began private preschool at age 3, I have created a social story for any teachers or staff who may be working with Drake.  

Last year's  Kindergarten social story was quite extensive because I was a total basket case and beginning public school with a non-verbal child is absolutely terrifying.  However, if I could have hand picked a school, teachers, and staff to work with my child...I would have picked all those people.  

This year, Drake will be surrounded by many of the same teachers and support staff.  However, he will be joining the regular education children throughout his school day for lunch, recess, and electives such as art and music.  Of course, he will have Koda with him and his 1:1 support. I am all about inclusion, but I don't believe it should be rushed or forced.  As Drake is ready, he will be spending more and more time in the regular education classroom.  But, not until he is ready.  I think that is the beauty of this school.  They do what is best for each child and know exactly what inclusion should look like.  We are blessed to have educators and staff who really get it.

I am quite proud that I don't feel the need to write a ten page novel to the teachers and staff this year.  I'm sure they are thrilled as well. 

Dear teachers and staff, 

We are looking forward to another great year!  I am once again trusting you to take care of Drake and make sure he is protected, loved, and challenged educationally.  As most of you know, Drake is non-verbal.  However, this certainly doesn’t mean he doesn’t understand language, emotions, or has an inability to learn.  He has amazing non-verbal communication skills and also has his AAC device (please always give him access to his words).  Last year, I took Drake to school having no idea what the year would bring.  I can confidently say that it was everything I wanted for Drake, and more.  Mainly because each person who worked with Drake had his best interest in mind.  Thank you, thank you all.  
I have included some information about Drake below, information that many of you know already. Koda is also an important part of Drake’s day. She is a constant in his life, helps tremendously with anxiety, and has helped him socially.  If anyone needs training, has questions, please let me know. Feel free to share with anyone who may be new on his team this year.  
Most importantly, please keep me informed on how Drake is doing…both good and bad. Remember, Drake cannot tell me how his day has gone. I need to know if things are okay, for my sanity. I have no way of knowing if someone was mean to him, if he made a new friend, if he mastered a goal, or if he ate all his lunch….unless you tell me.  I will keep a communication notebook in his bookbag, just like last year. Please communicate with me there, by phone, text, or email.  

Here’s to a great 2018-2019 school year.  You all are appreciated and loved so much already! 

Last weekend we spent some time with two of our dearest friends.  These two friends are really the only people we socialize with that don't have a personal connection to autism, but they accept Drake and love him fiercely.  It's rare that we get to hang out with them without Drake.  But, last weekend we had the babysitter come over for a few hours and we went over to their house to just chill for awhile.  It was nice to just talk, laugh, and enjoy a carefree day.

During the course of our visit we talked about many different things.  They have always been so good about showing interest in what is happening in Drake's life.  During one of the conversations I talked about Drake and I swimming in the pool a few days earlier.  It started to rain while we were in the pool and we stayed because...well, why not.  Drake has always been fascinated by rain and wind. At one point it began raining really hard and I noticed that Drake kept going under the water.  I decided to go under myself...and the sound was magical.  It was sensory heaven.  When I finished the story my friend looked at me and said...

"Sometimes I envy ya'll so much."

It kind of caught me off guard and I turned my head kind of like a dog would when they are trying to figure out what you're saying.  I replied, "really?" She said, "yes, I really do."  Keep in mind, she didn't say those words with malicious intent. I believe she was being completely honest, but with complete admiration and respect.

From there the conversation changed, but I can't get those words out of my mind.  I have analyzed them over and over. You see, most of the time special needs parents are the ones who have an envy problem.  We envy what we think should have been or perhaps even what will be. We envy the "normal" comings and goings of life.  We envy the way people in the world take almost everything for granted.  We envy what we perceive as the easy life. Honestly, I don't envy  much anymore.  I had my moments in the beginning though, lots of them.  Because I've chosen to be a glass half full type of gal, I suppose it has helped me to see the beauty in the drastically different life we live.

So, for her to say that she envies our life...well....saying it shocked me is an understatement.

Since that day I've tried to figure out what exactly she envies.  Here are a few things I've come up with.

1.  Our simple life.  Everything about our life is simple, very little is ever complicated.   As a family, we all love just being at home together. We don't care about the comings and goings of life much anymore.  If we have to choose between going out to eat or cooking a meal, we choose to cook a meal. For this reason we turn down lots of plans.  We say "no' a lot. Has Drake made us this way?  Quite honestly, yes.  And we like it.  In many ways I believe this is why Drake is so chill most of the time.  We don't force him to do things for our benefit.  If I think he can handle it, we give it a try.  If not, you get a firm "no."

2.  Drake has zero interest in materialistic things. Hearing rain under the water is much more exciting than the latest lego set. He loves nature, wind, rain, shiny things, hugs, tickles, string, water, his dog, and only certain people.  He never asks for anything at the store. If he does and you tell him..."we have that at home," that is good enough for him. No complaints.  He never sees a toy on TV and demands it.  If we all woke up on Christmas morning and there was nothing under the tree for him, he would grab his iPad and go sit in the chair without a care in the world.  That's kind of awesome, isn't it?

3. Drake never asks to do anything outside of things we do at home. He isn't interested in sports (thank you Jesus, I don't have to sit in the burning hot sun while he tries to hit a baseball).  He doesn't complain if we don't let him do this or that..unless it has the word iPad attached to it.  He may ask to go see his grandparents, go to church,  or go swimming.   We take him places and we try to expose him to as much as possible, but at the end of the day....home is where his heart is.  Don't get me wrong, he likes to go lots of places, but there is always a smile when we pull back into the driveway.

4. Our life is easy.  Now...before ya'll start throwing daggers, let me explain.  Autism is hard.  Everyone who lives it, knows that.  Some days I count down the minutes until bedtime because I've had about all the autism I can take.  But, most days are just easy. We keep things simple. We have a routine and we stick to it like glue. Every day is kind of the same.  There may be a day or two a week that things are different, but for the most part we stick to a strict schedule because it makes Drake's life easy, and therefore ours.  Drake has an intense therapy schedule that would blow most people's mind.   Five days a week we are on the road 2-3 hours a day for the last four years.  I know that doesn't sound easy at all, but it's easy for us because it's what Drake needs.  He wouldn't be where he is today without it.  This leads me back to #1 above....because our life is so busy during the week, we love more than anything to simply be at home on the weekends and decompress.

5. I've thought long and hard about how to word this one.  I think it would be easy to envy our life when you think about how scary the world is today.  There is a pretty huge likelihood that Drake will never be addicted to drugs, enjoy the taste of alchol, steal (intentionally), or any of the other horrid things that his typically developing peers may be tempted by.  Being blessed with literal thinking helps in many ways. Drake doesn't see skin color, he doesn't know what hatred is, he doesn't know about wars and famine and death, he just lives and loves. The fears that parents of typically developing kids have will most likely never be my fears.  On the other hand, I have fears and worries they cannot imagine.

After writing these thoughts down, I can understand how our life would look less complicated in many ways.  While we have many worries, they are not the worries of the world. Living this life is truly like being in a different galaxy.  People on the outside don't always understand us, but those who do can see the beauty in it all.  It can be hard, isolating, complicated, infuriating, but also peaceful, simple, beautiful, untarnished, and freeing. But then, I'm one of those weirdos who thinks autism is cool.  I'm fascinated by the way Drake sees and hears the world.  I love the way he communicates non-verbally better than most people verbally.  I love his snarky little expressions and the way he demands attention.  I love his curiosity and his brilliant mind (a mind that I would love to live inside just once). I look at him and I'm amazed most days. If I am envied for any of that I am proud.  Autism can be hard, but loving Drake and the life he has helped us live is easy.

I can't believe you are 15 years old today.

Where has the time gone?  I'm sure it would have gone by even faster if you were actually here on Earth with us.

Drake is already 6....I cannot believe we've had him for six years.  I also find it hard to breath sometimes when I think what a blessing you would be to him.

I always dreamed of having two children.  I guess it's part of growing up as an only child.  I wanted a brother or sister, and almost had one.  She would be eleven years younger than me if mama had not miscarried midway through the pregnancy.

It's hard to think about death until it happens to you.  Sadly, it's also hard to appreciate what you have until your world is turned upside down.  I wonder sometimes if I would embrace Drake's autism if life wouldn't have taken you away from us.  I know an autism diagnosis is difficult and some children struggle far more than Drake ever has or ever will....but I can still see all the good things about autism.  I would like to think I would feel the same way regardless of child loss, but I often wonder.

I think sometimes losing someone precious to you, has a way of changing your entire outlook on life. Losing a child even more so.  Through the years I've learned to see the good in almost any situation.  I've learned to forgive quicker...and I've learned to walk away when necessary.  I have no time for the regular annoyances of life. Things don't get under my skin like they did years ago, because I have survived something no one should ever have to survive. It also makes me a bit judgmental because some of the things people complain about often make me cringe.  You don't complain as much when you've buried your child. Nothing can really compare to that, you know?

Burying a baby is the worst. I suppose that's why I'm so big on hope.  I've survived one of the worst things possible and God gave me another child...a child I never thought I wanted.  A child diagnosed with autism.  I love him fiercely.  He healed a place inside of me that was void. He gave me the hope I needed.

I still miss you, Lexi.  Every single day.  You would think  after 14 years that I may be able to go a few days.  Nope.  Laying in bed at night being unable to sleep is the worst.  Thats when the memories like to visit.  It can happen during the day as well, but I'm normally so busy that I'm able to redirect my thoughts.  Our time with you was so hard.  The constant, mind-numbing worry, and fear was literally indescribable.  You were so fragile.  You were so sick and  unhappy most of the time, yet when you smiled it lit up the whole room.  You, like Drake, were very observant and a deep thinker.  Thinking back, I should have known you wouldn't survive. Your will to live was not there.  This was not your home, and you knew it.  *Those of you who do not know the story of Lexi can read it here.*

When Drake was born, I knew immediately that he was healthy.  Because of you, my instincts are pretty intense...and the first time I held him  I felt complete peace.  I knew without a doubt that he was strong, healthy, and ready to do this thing called life.

Drake being autistic has made life a bit more challenging.  Things are different for your Daddy and I now.  We don't have the freedoms we once had, sacrifices needed to be made, we don't always get to do the things we want to do, and there doesn't seem to be enough hours in the day....but we are also so happy.  Drake has a way of making anyone happy.  He is so full of life.  He can charm the pants off of anyone, and it sometimes makes me chuckle to think about how much that would probably annoy you as an older sister.  He has come so far in six years with therapy, love, determination, and so many awesome people who love him.  I know you would be as proud as we are.  He is truly a light in our life. Our life may be different, but I feel like...in some small way...having Drake with us gives us a little piece of you.  I see you so many times in his facial expressions.  It literally takes my breath away.

Lexi, I miss you.  I hope you know that your Daddy and I love you.  It's hard being here, while you're there....but I have no doubt that I will see you again one day.  I know you are happy now.  I know  you are at peace, and that makes me smile.  Since you've been gone, so many people who loved you are in Heaven with you now.  It makes me tear up to think of the reunions I'm missing.

Happy birthday sweetie.  One more year and you'll be sweet sixteen.....I really hope there are cars in heaven. <3

I have written a blog for Lexi or about Lexi every year on her birthday since starting this blog for Drake.  I hope you'll joining me in remembering and celebrating this beautiful child who was my first love. 

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