Walking With Drake

One Mother's perspective on autism.


Eighteen years ago I held this beautiful lady in my arms for the first time.  Less than a year later, I held her in my arms for the last time. 

Every year since I started blogging about autism and Drake's life, I have also included Lexi and her life on her birthday.  While her life was short, she taught me more in nine months than anyone ever could.  She changed me in a way that I'll never be able to explain and losing her affected me mentally, spiritually, and physically. Even though it has been seventeen years since we said goodbye, it is still so fresh in many ways.  It feels like it happened yesterday, it feels like something that happened to someone else...and in truth it did happen to someone else.  I am not the same.  Losing a child, especially a child you've physically held in your arms, does something to you that is life altering.  It's way beyond grief or pain.  It's a constant feeling, almost like a headache that never goes away, yet some days are much better than others.  If I can still feel it after all these years, imagine someone with the freshness of loss.  

I've often said that losing a child at different stages in life is even more damaging.  I can't imagine losing a two year old Lexi, or a twenty year old Lexi.  To me, the more memories you have...the stronger the grief.  Of course this may be a way of coping for me.  The brain is a powerful thing and it will do whatever it has to do to recover. Throughout the years I've noticed that I have big gaps in my memory. I don't remember random things from my youth, things that happened in school, people, or places.  I hear this is common when you lose a child.  Your brain is trying to recover from trauma and in doing so you may lose memories that are not necessary for survival. 

People deal with child loss in various ways, and honestly anyone who assumes they are doing it wrong..I pray you never have to experience it.  For me, I pushed forward. I jumped right back into life and keep my mind and body as busy as possible.  I went back to school within months, graduated with honors from college, and began a teaching career.  I was taking up to 40 hours a week of college courses because I had to immerse myself in something that would crowd my mind. I had amazing friends who kept me busy on the weekends.  I literally never stopped going and doing for several years.  It's what I needed to survive. 

Since we've had Drake I have felt  peace that I've never felt before.  I feel like a part of her is with us again.  We almost didn't have more children, but after several years decided we could do it. I'm so glad we made that choice. Learning that Drake is autistic was not a tramuatic experience for me.  I did what I've been used to doing for seventeen years....I dove in feet first running. It's just who I am now and even after all these years, it's a coping mechanism.  Don't get me wrong, I am not grieving because Drake is autistic. It sickens me to hear people say that.  Drake is very much alive.  Drake is happy.  He is here with me.  I can touch him, smell him, see him.....I will never grieve for what I thought life should look like.  I choose to celebrate the child I have. A child that I look at sometimes and see his sister so clearly. 

This would have been Lexi's senior year of high school. Her senior prom. Her graduation. The year she decided what profession or college she wanted. Honestly, it stings a bit this year more than others.  I try to see her in the myriad of prom pictures. I'll do the same when graduation pictures pop up on Facebook.  I look at all the beautiful prom dresses and smiling faces and try to imagine what she would look like.  Lexi, becoming an adult....possibly getting married in a few years, having her own children, doing life...

If I sit and think on those things too long, it overwhelms me.  Instead I choose to imagine her in heaven.  She has been with Jesus for all these years.  She is happy.  She is whole.  Her heart is healed.  She will never feel another needle prick, she will never face another surgery.  No pain, only happiness and peace. One of the things that I prayed while I was pregnant with both Lexi and Drake is that they would know the Lord.  My prayers were answered and I am thankful. I am not angry at God for taking Lexi.  I am not angry at God for giving me an autistic child.  I am blessed that both of these children have done nothing but draw me closer to Him.  I have depended on Him to keep them safe and protect them.  He has done exactly what I asked, just in different ways. There is no bitterness in my heart, but simply thankfulness that He trusted me to care for Lexi for nine short months and is now trusting me to care for Drake.  

I decided last year that I would stop blogging about Lexi after this year.  She's 18.  She would be an adult.  I cringe to think what she would say if she knew I was blogging about her adult self. One thing I will never do is forget her.  I will continue to mention her name.  I will continue to use her story to give others hope.  I will never stop talking about her or her legacy.  She changed many people in a very short amount of time.  Her life had purpose.  She was able to accomplish things in nine short months that many people can't manage in a lifetime.  It is truly a supernatural experience to think back on the lives she changed, including mine. 

Today and everyday, I remember.  Happy birthday, Lexi Rae, it was an honor to be your mama. 

Seventeen years ago I gave birth to a beautiful baby girl.  It's hard to believe so much time has passed.  In many ways it seems like forever ago, yet in some ways it seems like yesterday.

That's the thing about grief.  Some days the weight is heavy, even seventeen years later...and sometimes it's like a dream, but you always remember the details.

Lexi was with us for nine months.  One week after her birth she was diagnosed with Congenital Heart Disease, having several heart defects.  It was a complete shock to us, and an absolute nightmare for two young parents who thought they had a healthy baby girl.  After several heart surgeries, tests, and procedures her body just didn't have any fight left.  On Feburary 4th, 2004 we unhooked her from all life support and I held her in my arms until her heart stopped beating on the monitors.  It's a memory that still stops my breathing at the most random times, even sixteen years later.

Every year, since I started this blog for Drake, I committed to write about her and for her on her birthday.  This will be the last blog that I dedicate solely to her.  Next year will be her 18th birthday, and while the grief will always remain....I can imagine that any 18 year old would say..."Ok, Mama...come on, I'm an adult now."

But today, I want to tell you what I miss the most.

I miss her big blue eyes.

I miss her beauty.  She was stunning.

I miss her laughter that could brighten every room.

I miss the way she was so serious and observant, much like Drake.

I miss the way she smelled.

I miss her strength.  She went through more in nine short months than most go through in a lifetime.

I miss the way her eyes would light up when I walked into a room.

I miss the way her baby wash smelled on her specifically.

I miss the way she seemed to mesmerize everyone around her, even doctors and nurses.

Honestly, I just miss her.  However, I don't miss how she suffered.  I don't miss how painful it all must have been.  I don't miss that she spent more time in the hospital than out.  I don't miss seeing fear on her face.

I know with all my heart and soul that she is in heaven now.  She is not suffering.  She is happy.  She is full of life.  She is at peace.  And that's how I survive, because I know where is she.  I know I will see her again one day.  I don't know the reason why God chose us to be her parents and to go through such as time as that, but I do know that it solidified our marriage.  It made us strong.  It made our faith like steel.  I accept it all.  Things happened while she was alive that would not have happened if God had not sent her.  She lived and died for a reason.  While it was all more than I thought a human could handle, I'm thankful that God decide to open my eyes to her purpose...and mine.

And here I am again with another blessing, Drake.  Drake who is very much autistic but so healthy, happy, and alive.  It's like winning the lottery. I can sometimes see her little face in his face, and I cannot explain what that does to my heart.

Lexi made me strong, sometimes intimidatingly so. I'm proud of that strength and determination.  It's helped me to get Drake everything he needs.  It's made me into someone who can love this child autism and all.  I appreciate every single hair on his autistic head.

I have seen, more times than I'd like to count, parents talking about grieving their autistic child.  A child that is very much alive.  A child that may have difficulties but is overall healthy.  It nauseates me. No one would utter those words if they had actually lost a child.

I don't grief that Drake is not typically developing.  I grieve for my daughter who died in my arms.  I don't grief that Drake "may not" have the life he should have.  How absurd!  If I have anything to do with it, he will have a phenomenal life and be absolutely adored by every single person he comes in contact with.

I miss Lexi, every single day. I wish she was here to be a big sister to Drake.  I wish I could sit with her at the table and talk about High School drama.  I wish a lot of things were different, but I am thankful just the same that she is at perfect peace.  She is where she is supposed to be, and I know she's safe.  I know there is no better place to be.

Happy Birthday, Lexi Rae.  Know you are loved.  Know you are missed.  Know that we will be with you soon.  I can't wait to see you, baby girl.

I was reminded of the importance of Christmas at church yesterday morning.  During the sermon I reflected on many things and how grateful I am for the life I have now. I became a Christian in May of 2000.  Before becoming a Christian I always knew the meaning of the season.  I knew the reason we celebrated Christmas and I would even say that I believed it all.  I believed in Jesus and I knew there was a God, but nothing about my life showed that I was one of His children.  Christmas has changed for me over the years.  I still love the magic of Christmas.  I love gifts and I love giving to others.  However, the real purpose of Christmas is so much more. 

To those who don't believe, the story of Christmas may seem like a fairytale of sorts. It takes faith to believe such a story. I believe it with all of my heart.  I believe Jesus came down to earth, was born a man, and experienced every temptation any of us have ever faced.  Yet, he remained perfect.  No imperfections.  No wrong-doing.  Even so, he was hated.  He was bullied.  He was scorned.  He was accused.  He was betrayed.  He was abused, beaten, and humiliated.  He did it all in the name of love.  He did it for you and for me.  He never once complained.  Read that again.  He never once complained. 

He asked only once for a different path, but only if it was His Father's will. 

“My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will.” Matthew 26:39

If I think on it much, it takes my breath away.  He did it all for me.  He did it all for you.  

When I reflect on my life and the things I have been through, it is nothing compared to what He faced.  Any pain, hurt, or wrong-doing I have experienced will never compare. I held my nine-month-old daughter in my arms and watched her heart stop beating on a hospital monitor many years ago.  Even in that, I was at peace in His decision to take her. I grieved and I hurt, but I never blamed God for what I went through.  It was part of His plan.  Perhaps he was preparing me for Drake.  Perhaps he needed me to be stronger.  Perhaps her time was simply up.  No matter the reason, I trust Him. I suppose that is why my outlook on autism and life is different than some.  I refuse to complain about things that cannot be undone.  I refuse to be a sinking ship when I have Him as my guide.  God gave me this child for a reason.  I don’t have all the answers and many days I don't know what I am doing, but I can assure you that I was given this path because it was mine to have. I'm not mad about that.  The only thing I can do is be the best mama to this little boy that I can possibly be.  And I trust Him to guide my steps.  Am I fearful sometimes?  Of course.  However, I refuse to live a defeated life.  I refuse to grieve for a living, breathing child that has a different neurology.  He is very much alive and every single step he walks as been ordered by God.  I trust in that each day. I will not live my life in despair.  I will not complain when millions and millions of people on this earth have faced far more hardship.  Instead, I will rejoice in what I have been given and accept it as it is. 

For me autism has been a gift. I'm not ashamed of that.  I am proud of Drake, autism and all.  I'm not faking it for the sake of social media or for anything else.  This is our reality.  I have accepted it and in many, many ways I appreciate the simplicity of our lives.  I am not jealous of what I don't have.  Each and every day I wake up and plan to have a good day!  It doesn't always work out, but tomorrow is a chance to try again.  I know that many families struggle with unimaginable things such as aggression, self-harm, seizures and a whole host of things that we have not experienced.  My heart breaks for them.  However, the people I admire the most are some these families.  Their determination and drive inspires me every single day.  I used to fear what some of these families deal with such as seizures and unimaginable aggression.  However, their steadfastness and hope has shown me that even those journeys can have successful outcomes.  Those are the people I seek out when I worry.  

I also seek out the One who controls it all.  I often pray, "Lord, I don't know what to do in this situation, but I need you to make it happen for Drake.  You know what would be best."  I have never once been left feeling like I didn't get an answer or the right direction.  Everything has happened with perfect timing and been just what Drake needed, when he needed it.  

This is our path.  In light of what the Lord faced, from his birth to his gruesome death, who am I to complain?  Drake brings me joy every single day.  On days that he struggles I often worry, but I know who is in control. I cannot live my life consumed with fear.  It wouldn't be fair to Drake.  We take each day and do with it what we can. I was not given this life or this journey to live each day defeated.  If I can't be a light at home, I certainly won't be a light to others.  

This child has brought me immeasurable joy.  He has been a blessing to everyone who meets him.  I think part of that has to do with how I have chosen to look at this journey.  I walk into any situation demanding acceptance of him.  I don't generally have to tell people how to treat him because they follow my lead.  They see the acceptance I have for him and they do the same.  

Christmas to me is about hope.  Hope is something I always keep at the forefront of my mind.  On bad days, I have hope.  On good days, I have hope.  Jesus came to this earth to give us all hope. The hope and promise of a Savior.  Who am I to ever complain about the cards I've been dealt after all He has done for me?  Each trial and tribulation has made me stronger, better, and more capable to handle the next obstacle.  I choose to live my life in a way that brings hope to others.  I want people to read our story and realize that having an autistic child is okay.  Yes, life will be different, but it will also be beautiful if you allow it.  His will may not always be what I imagined, but I know it is perfect and what I  need.  For that, I am thankful. 

I hope the next year brings you all immeasurable joy, hope, and peace.  May we all carry the hope of Christmas in our hearts.  

Luke 2:1-20 New International Version (NIV) Bible Gateway

The Birth of Jesus

In those days Caesar Augustus issued a decree that a census should be taken of the entire Roman world. (This was the first census that took place while[a]Quirinius was governor of Syria.) And everyone went to their own town to register.
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. 10 But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people.11 Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. 12 This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”
13 Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
14 “Glory to God in the highest heaven,
    and on earth peace to those on whom his favor rests.”
15 When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.”
16 So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. 17 When they had seen him, they spread the word concerning what had been told them about this child, 18 and all who heard it were amazed at what the shepherds said to them. 19 But Mary treasured up all these things and pondered them in her heart. 20 The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.

Earlier this year a dear friend friend of ours was diagnosed with cancer.  I'm talking scary, put you on your knees, type of cancer.  I'm very grateful to say that he is now completely cancer free.  The reason I am sharing this is because I would like for you to think for a moment about how we as humans process information.

You see, our friend went through a very scary time.  He went through weeks of radiation and chemo.  Then, just a couple of months ago he had a very complex surgery to make sure no cancer returned.  As he was waiting for surgery he had the opportunity to speak with others who had gone through this type of surgery.  He spoke to several people to try and understand what he would be facing with the surgery and recovery process.  You may be thinking, "what is the purpose of all this?" 

You see, the people who were negative about the whole process made him fearful and apprehensive.  Yet, the people he spoke with who were positive gave him hope.  He clung to their words and tried his best not to think about those who described the whole experience in a negative way. While the recovery has been rough, he is doing well.  He is a very positive person by nature and I truly believe that positivity along with his faith has brought him through.  

While I in no way think autism can compare to cancer, I do think we can draw a comparison between the way we handle things in life.  

People, it is so important to surround yourself with people, articles, health professionals, therapists, and social media that will encourage you.  When I first suspected that Drake was autistic, I was absolutely petrified.  Why?  Because almost everything I read was negative. It was all doom and gloom.  Bad. Horrible. Your life will never be the same.  Your child will never do this and he will never do that.  The life you once knew is gone.  You need to grieve for the life you thought you would have.  You need to take care of yourself, but you won't be able to. You will be sad a lot.  You will never sleep.  You will wish for a different life.  

Doesn't all that give you the warm fuzzies?  It depresses me just writing the words. Now, could some of those things be true?  Absolutely. I have never claimed that raising an autistic child is easy.  I also cannot compare our life to the lives of others.  I know that some families have many more difficult days than we do.  In fact, some families have more bad days than good. I have never meant my message to discard the seriousness or struggles of what other families face. I don't even fault people for discussing the hard times.  The realties of autism are necessary for awareness, but I beg you to be respectful.  Your child and mine are not the same. Having said all that, let me say this.  We have hard days too.  More importantly, Drake has hard days.  He's had hard years, months, and weeks.  But one things I will never do is promote a message day after day of how hard it all is for us. Mainly because it's not all hard.  If we only have one good day a week, I hold onto that good day with all that I have. 

If I constantly focused on the hard it would take me to a very dark place.  I've been in dark places, and I don't like them much.  I don't write about being sad because I'm not sad.  Yes, I've had sad days, consumed with worry.  All parents have. One thing I will never do is bombard anyone I know with that sadness.  I try to be positive, even on days when I don't feel very positive.  I do it because that is  the kind of person I needed in the beginning.  I needed someone to say, "it's going to be okay, you can and will do this." We all need more people who are willing to hold our chin up rather than sit with us in sadness. 

More than any of that, I choose to be positive for Drake. Because he deserves it. He is growing up in a world that doesn't understand him.  I refuse to let him live in a home that is is heavy with grief for a child that is very much alive.  I will not allow him to feel less than in my home.  I will not talk about him or to him like he cannot understand. Nor will I write about him as if he doesn't exist and will never understand. I will always presume competence and I will expect anyone around him to do the same. Do I have issues with parents who don't practice these things.  Yes.  Yes, I do. I'm not sure if you listened to a doctor, a therapist, or if one day you just made up your mind to assume that your child "would never." 

I would suggest you find people and places that change your mind.  There is a child I know and love who in the last couple of years has  absolutely astounded everyone around him with all the things he knows. He's completely non-verbal and has had some of the most severe behavior problems I've ever heard of....yet in the midst of all that...he was listening.  He was learning.  He was watching.  He has been very present, even though he seemed so far away.  

Our kids are listening to us.  Our kids may one day read our words.  Our kids are totally dependent on us to make a way for them.  We cannot do that if we can't even do it within our four walls.  Wake up! 

Don't you dare give up on your kid.  Don't you dare doubt what they can understand.  Don't let sadness consume you so much that it affects the mental health of your child.  Do you know why there are so many bitter/angry autistic adults in this world?  Because somewhere along the way they have dealt with a person, family member, therapist, or teacher who made them feel like they aren't good enough.  A person who talked about them like they were deaf.  A person who discarded them with their words. It's wrong on so many levels. 

Growing up in a neurotypical world is going to be difficult for Drake, but I can promise you this...it won't be because of me. I will never stop promoting a message of acceptance, love, and hope for my kid and yours.  

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I think the fear of autism is something that is very real.  It seems like such a dreadful thing to have a child diagnosed with autism.  I get it. Personal friends message me all the time and want to know if vaccines cause autism...if there is something they can do to prevent it.....if there is a way to know.  I don't fault them, but I do wish I could change their mind.  Everyone wants a perfectly healthy, "normal" child.  I thought I wanted that as well.  I'll admit there was a level of fear when I realized Drake wasn't developing typically.  I started noticing differences way before he was a year old.  I thought perhaps it was paranoia.  I was expecting something to be wrong...I knew it was coming...I was anticipating it. 

Sixteen years ago I gave birth to a seemingly healthy baby girl, less than a year later she was gone thanks to Congenital Heart Disease.  So, as you can imagine, I was on high alert when Drake was born.  All the tests came back that he was healthy.  He doesn't have CHD.  He is going to be just fine, the doctors said.  

When I realized Drake was indeed autistic, around one year old, I was fearful. Fear comes from lack of understanding.  I didn't know anything about autism.  All I knew was that my baby had it.  I also knew it wasn't a death sentence.  I began to realize it was just a different way of life. 

The next year and a half I researched/read/studied any and everything I could find.  I researched the best therapies, the best doctors, the best clinics, and the best parents/advocates to understand.  I tend to be that type of person...I want to know it all, and I want to know now.  I didn't want any surprises.  I expected the worst, but hoped for the best.  

Now, some five years after Drake's diagnosis, I can confidently look back and see that I did all that I could.  I am doing all that I can.  I have him at one of the best therapy clinics, he attends an amazing school, he has a great team of therapists, paraprofessionals, teachers,  and doctors.  I quit my job and my husband became the sole breadwinner so that we could make all these things happen. Doors have been opened and closed, and each step has benefited Drake in some way.  I've learned over the last five years to trust that God is working this all out for his good. Even when I become anxious about a change, I've learned to allow it happen because it somehow always benefits Drake.  The past couple of years we have been in a good place.  Things have been mostly good.  

But lately, things have not been so good.  

Summer has always been my favorite time of year.  The days are longer, the pool is open, my husband is on vacation more, the sun is warm, and it's more time with family.  This summer has been unique in that, I'll be glad when its over.  Drake has had a tough time with anxiety, OCD, ear infections, sickness, lack of appetite, poor sleeping, and just not himself many days. Now, all of this is somewhat normal in an autism household.  Things change.  Regressions happen.  Children change and develop. Sickness is inevitable. I would even say that some things like sickness are more difficult because many times the child cannot verbalize what exactly is going on.  Yeah, it's tough and there is nothing wrong with admitting that.  It's a helpless feeling when you don't know how to make your child feel better. 

But, because I have level of PTSD from losing a child, my mind goes into overdrive.  I think the worst possible thing.  

Brain tumors


Any other horrible, incurable disease you can think of (insert here).

You see, autism doesn't scare me in the least.  Losing this child does. I don't think I could do it again. It keeps me awake at night...wondering, watching, waiting.  

Drake is the most magical, happy, entertaining, funny, easy-going, go-with-the-flow, little guy you will ever meet. The thought of losing any of that absolutely petrifies me. 

I'm not worried about him being non-verbal. I don't worry about his unusual stimming, his repetitive habits that drive me bonkers, his limited diet, his strict adherence to routine, or his hyperactivity.    I'm not worried about any other thing that autism may throw at me.  But I do worry about losing him...autism and all. 

So you see, when other "advocates" talk about their hardships and how much they hate autism it gets to me.  When they moan and complain about any and everything they can think of....it turns my stomach. Perhaps I'm being a bit judgmental.  Quite honestly, I have a right to be. If I can so easily be judged for keeping a positive attitude 99% of them time, then you can better believe I will judge you for complaining that your kid won't sit for more than three minutes. My thought, "be thankful you have a child, period."  As I have said many times, there is nothing wrong with saying things are hard.  There is nothing wrong with talking about the hard things (respectfully).  But when the 'hard' becomes your mantra I think it's time to stop what you're doing and be thankful for your living, breathing, autistic, beautiful child. 

Just be thankful.  Be thankful for every single moment. I know that all of this will pass with Drake. Things are better than they were, it's just a matter of continuing to work to figure out what is bothering him. We have a couple of doctors appointments coming up to try to get his ears back in tip top shape and an appointment with other doctors to get the anxiety in check. That doesn't mean I will be any less paranoid and crazy, but at least I'll know I'm doing all I can do to help him.  

I will never be afraid of autism.  For me, I cannot imagine Drake being any other way.  I love his quirks, his personality, his attitude, and his appreciation for the simplest of things.  Everything about this child has made my life better.  I was given a second chance to be a mama and I will never be bitter and think autism ruined that. On the contrary, autism made our lives better.  You are welcome to disagree with me, but don't you dare tell me I'm not being realistic.  Autism doesn't scare me in the least, but parents who think autism has ruined THEIR life...they scare me.  They should scare you too. 

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I'm slightly afraid that I am going to be stoned to death for writing this, but it needs to be said. Let me begin by saying that I think we all have the tendency to be toxic in one way or another.  By nature, human beings are selfish.  We want what we want, when we want it.  Most of us can control it, or tame it in one way or another.  For some of us, it's something we have to fight daily. We must decide every single day to be selfless.  For parents, in most cases, that comes naturally.  When we are given these tiny humans to raise, we suddenly become selfless in many ways.  Most of the time that selflessness comes naturally.  We don't wake up every single morning and say, "ok, today I'm going to make myself parent these kids."  "I'm going to make myself fix them breakfast, etc."  When you have children your needs go on the back burner until their needs are met.  It's natural for most people.  Others suffer from mental health issues that prevent that natural change.  Some had their own toxic parents that either made them better or bitter.  There are so many circumstances that can make or break you as a parent, I understand all that.

What I don't understand is being toxic on purpose.  You see, social media has created a whole new sub-group of selfish/toxic people.  I'm not even sure these people are as toxic in real life as they come across on social media.  Social media empowers people to do or say anything their heart desires.  It is a juxtaposition of a blessing and a curse. I've seen it time and again.  People I know personally who will jump on a thread and say all manner of things.  When I read it, I feel like I don't even know who that person is.  In most cases, it's highly unlikely that they would be bold enough to say those same things face-to-face.  In fact, I have been guilty of this myself.  Social media makes us bold.  It's much easier to type words and hit that return key than to say something so brazen in person.  What I think we easily forget is that your written words are forever.  Any text message, email, inbox, social media thread, blog, or posting on FB has the potential to stay with you forever.  Think about that for a moment.  Screenshots are forever people.  What you say and do on the internet has the potential to affect you or stay with you for the rest of your life.  People have lost jobs over things they have said on social media.  Do you know who else will be affected by your words?  Your children.  Your autistic children. Your developmentally delayed child.  Your "hard" child.  Your ADHD child.  Your child who is non-verbal.  Your deaf, blind, or any other impairment child. And yes, even your typical child.

Because I am so "aware" of autism, I see lots of toxic parenting going on in the autism community.  These parents are not hard to spot.  They are often self-centered, disrespectful of their children's privacy, emotionally reactive, manipulative, envious,  critical, blaming, competitive, and draining. I didn't make this up.  You can Google toxic parenting and get the same thing.  Now, don't get me wrong...you don't need to be the parent of an autistic child to be toxic. But, because I am in fact the parent of an autistic child, I am somewhat immersed in the sea of parents who have children with various needs. Some of these parents handle things better than I ever will, some have burdens to bear that I would never want, some have their own health issues that make things more difficult, and some need to seriously look in the mirror and realize how toxic their parenting really is.

I hate autism

This is so hard (said so often that is becomes a mantra).

I wish my child did this or that like Karen's kid. 

People need to understand that our lives are horrible. 

I feel like a prisoner.

I am so sad.

Now, I want you to think for just a moment on those words.  What if your child read them?  How would that make them feel?  I'm not saying the feelings aren't valid, they absolutely are.  I just don't understand why you would proclaim it so loudly for the world to see.  What does it prove?  Is it being helpful or harmful? 

This is so hard.  This is so hard.  This is so hard. This is so hard.  This is so hard.

I am so sick of seeing those words over and over and over! Yes, it can be hard.  No, there is nothing wrong with saying it's a hard day.  But seriously people, some folks spit out those words so often that I feel like I'm on Drake's iPad watching it on repeat.  It's driving me nuts.

And who is it helping if you say it is hard?  Let me guess, "people can relate."  Hogwash. What about your kid?  Do you look at them day after day and say those words?  Do you?  I hope when they look at you they see nothing but a parent who is trying everything they can to help.  I hope they see more smiles than frowns.  I hope they see HOPE.

Parenting a child is hard, and many times parenting a child with addional needs is much harder. I cannot deny that.  There is nothing easy about watching your child struggle, in whatever way that may be.  Some parents deal with intense meltdowns, aggression, self-injury, aggression towards siblings, children who have seizures, children who elope, children who are extremely defiant, and children who are never comfortable or at ease.  All of these are harder than anything I have dealt with on my journey with Drake.  I don't presume to know what that life is like, all I can do is learn about that side of autism through others...and I do.  Some of my closest friends in this community deal with all of those things, and more.  The kicker is, they deal with it all with grace.  They don't disrespect their child by talking about private details on social media.  They don't stand up at a loud speaker and proclaim how much they despise autism, even though I'm sure they do some days.  Do you know why they don't do those things?   Because they understand the importance of keeping their child's most desperate days private.  I've said this before and I'll say it again.  How would you feel if someone constantly described your bad days?  Not only that, they did it for the world to see.

What is more important?  Your popularity and how many people can say, "me too" or your child's dignity?  There are ways of telling your story without making your kid look like a spectacle.  Facebook isn't a circus show.  I refuse to put my kid on display for the world to gawk at at say..."Oh, I'm so sorry, me too." It's wrong.  It will always be wrong. What I will do is show you the confidence my kid has.  I'll show you his expressive face.  I'll tell you about milestones.  I'll ask you to celebrate with me. I'll even tell you about some rough times, but only if I can do it and laugh.  Why do I do this?  Because I believe with ALL of my heart that one day he will read what I have written.  He will not be ashamed of autism.  He will not hang his head and wonder if he ruined my life.  He will not read about me being sad, because I'm not. Not only him, I don't want any autistic person to read my words and feel like autism made our lives miserable.  They get enough misery from society.  Drake is my child.  No, he isn't what I expected...but he is what I have and I can't imagine this world without him and his autism in it.  Toxic parenting is a dangerous for anyone, but for autistic children the ramifications can be even more damaging.  Our children deserve to be talked about respectfully, especially from their parents. I hope you will join me.

Lexi Rae would be sixteen years old today.  I can't wrap my head around that age. What would she be like? Would her sky blue eyes still pierce anyone who looked at her?  What kind of car would she want as her first car?  Would she have a boyfriend?  Would she be sassy like most teenagers?

Grief is a very taboo subject.  Especially when it involves the death of a child.  People tend to shy away from thinking, much less talking, about child loss.  It's not that people don't care, but it's just too hard to comprehend.

Sixteen years ago today, I gave birth to a beautiful eight pound baby girl.  Less than a year later just a couple months shy of her first birthday, she was gone.

You can read more about her life/death here: Heaven Has A Teenager.

I decided when I started this blog to talk about autism and Drake that once a year I would also dedicate my blog to Lexi Rae. This is my fourth blog dedicated to her.  After all, her life was important.  And for me it still is important.  You see, her life and losing her changed me.  While I did manage to put one foot in front of another and move forward, the loss of her broke me in many ways.  I'd even say it hardened me.  It was such a traumatic experience for us as a family and rather than let it break me, I allowed it to harden me a bit as a way to survive and move forward.

Allen and I were in our late twenties when we had  her.  We did a lot of growing up in less than a year. We functioned as one person for many months, and the bond we developed during that time was unbreakable, and still is.  Caring for a sick child will either make or break a marriage, and I'm thankful that it solidified ours.  There were days when I didn't know if I could continue on with the level of sleep deprivation I was facing.  Lexi was not a happy baby.  She was sick or in the hospital most of her life and she rarely slept.  It was hard.  The absolute hardest thing I have ever done or ever will do.  I don't think many people realize what losing a child can do to someone.  I also suffered a very early miscarriage before her, and while that hurt me...it didn't change me the way Lexi did.  I held her in my arms until her heart stopped beating, and folks....that is something that will stick with me until my heart stops. You see, child loss never goes away.  The memories have faded over the  years, but sometimes, if I allow myself to go there, I can still smell and feel her. It's mind-numbing and something I've learned to block.  Those are the kind of memories that will literally put me on my knees if I allowed them to fully surface.  There is no moving on from child loss.  You just somehow learn to exist with it.  You are trapped in a juxtaposition of love and grief. You go through the motions of breathing, laughing, eating, working, and existing. Everyday you somehow do things that need to be done, but yet you're still in that moment.  The moment when you lost your child.

I've had countless people tell me over the years that I am the strongest person they know. I am not ashamed to say that I am strong. It takes a strength to make your way through grief, to grab hold of life and let it pull you forward. The hardest thing I have ever done is watch my child die in my arms, and living every day since that moment has only been by God's grace and mercy.  Believe that. If not for my faith and knowing that Lexi is completely healed and safe in the arms of my Father, I would not hold my head high and continue on.  I have kept going all these years because He has given me the strength to do so.  It was never a goodbye for me, but rather a see-you-soon.

It wasn't until years later that I realized I may want another child.  It was scary to think about.  It had been almost seven years since she died and I didn't want to suddenly be fifty years old with regrets.  Drake gave me back a joy that I didn't know was possible.  I cannot imagine this world without him in it.  Yes, he is autistic. No, our lives are not typical.  But hardly a day goes by that I don't look at him and see her precious face.  Only this time it's happy.  Drake is healthy.  Drake is full of life.  Drake, who doesn't say a word yet, fills my heart and mind with such peace.  In my mind, I didn't expect to give birth to an autistic child...but God gave me a gift when he gave me Drake.  Yes, he has challenges...but the pure joy and love of life he has far outweighs any difficulties he may face.

So it is possible to come out on the other side of child loss and feel joy again.  For me, that joy came in the form of another child.  Our story, is just one story of child loss.  One of the worst things you can do is stop mentioning the name of the child that died.  Stop treating the subject as off limits.  Do you honestly think these parents have forgotten?   They think about it every single day....sometimes every single minute according to the circumstances.  They haven't forgotten.  They will never forget.  Speak that child's name often.  Don't you realize that speaking about that child keeps their memories alive?

Today, I have a sixteen year old in heaven.  I can't imagine a birthday party more grand than the one she is having.  I love you, Lexi.  Happy birthday, I'll see you soon.

"When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you."  Isaiah 43:2 

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