Exoskeleton

Most of the people in my personal life know that I have a syndrome known as Ehlers Danlos.  At the most basic it means that my connective tissue is defective.  Connective tissue is pretty important.  It holds joints together, it holds your teeth in, it covers your body with skin, it keeps your vertebrae in place, it's what your organs and veins are comprised of, and the brain and spinal cord are covered in it.  Your body would not be your body without it.  If you want a more detailed explanation, you can click here.  There are other issues that go along with Ehlers Danlos, including something I have called Postural Orthostatic Tachycardia Syndrome.  With POTS, your autonomic nervous system is dysregulated and so your heart rate makes some pretty significant changes when you change positions (specifically laying to sitting or standing, or even sitting to standing).  You can read all about the symptoms if you click here.

I struggle.  Every. Single. Day.  You wouldn't know it to look at me because I do my best to not let my medical issues define me, or make me something I don't want to be.  And I don't want people to feel sorry for me, or think I am weak, or that I can't do something.  It was a huge deal for me to accept that I wasn't ever going to get better.  And it was an even bigger deal when two of my children were given the same diagnoses.  Now more than ever I felt like I needed to work hard to show a balance between taking care of yourself and not letting labels define what you were capable of.  When you have a chronic and progressive illness, especially one with no cure and no definitive treatment, it's easy to focus on the negative.  I didn't want to fall prey to the darkness, and I didn't want to find myself pulling my kids from there either.  This isn't a "suck it up" and "get over it" philisophy.  It's a balancing act.  An understanding that life will be tough sometimes, but you get to choose how you handle the hard times.

I spent the better part of the last year being told that I needed to have my hip replaced.  That once I did my pain would be better.  I became hopeful that this would be the end to years of struggle.  And then the tests came back and they didn't match what the Dr thought.  He didn't know what to do and told me that I needed to find a different Dr who could help me.  So I did.  And that Dr was the first to look at me and say "There are so many good things about you, unfortunately the body you were given stinks.".  He told me that if I had had that hip replacement, I'd have a beautiful new total hip- but my ligaments would never hold it into place.  So where did that leave me?  In tears.  I felt like any chance of things getter better was gone.  I thought I had gotten to a place of acceptance, but I hadn't.  I was still grieving.  I remember telling my Rheumatologist awhile back that there were still so many things I wanted to do, that I didn't want to have to give up who I was and the life I wanted to have with my kids.  I needed to be given a chance at something close to normalcy.   

So, about two weeks ago I went to see an Orthotist to be fitted for a hip brace.  Today I picked it up.  This is my last ditch resource for relief.  If this doesn't work, there are no other options.  When I first put the brace on I was instantly aware of how bad things are.  The brace works like an exoskeleton, it keeps my leg from abducting from my pelvis, and it keeps the hip joint from subluxing (partial dislocation).  This means that when I normally walk, my leg pulls outward from my hip and the ball of the hip joint slides slightly out of place.  My knee and ankle compensates for this.  So, when the brace was first put on, my knee and ankle freaked out.  They wanted to go where they were used to going.  The best way I can help you to understand is to have you think about how you might feel after riding a horse.  Now imagine riding that horse for days, jumping off, and then being told to close your knees and walk.  Not so easy.  The brace is far from comfortable at this point, but I can tell it makes a difference.  And I'm once again hopeful that the chance for some relief is possible.

So why am I sharing this?  Well, for those who know me and see me out and about, I wanted to explain why when you see me I might have on a new accessory.  I am hoping to avoid a lot of "Oh no, what did you do?!?!" moments.  And secondly, I wanted to put it out there that not everything is always as it seems.  While I am an open book, I am typically less vocal about my medical issues. I know my limits and I've worked hard to set healthy boundaries.  But not everyone takes things in stride like I do, and not everyone who hurts finds it easy to look on the bright side.  We are all surrounded by people who have things they carry with them - whether it be a physical, mental or life struggle.  The most amazing thing you can do is to approach each person with the same grace, mercy and love that you would want from them.  There is too much in this world that fights to destroy that it's so important that you do what you can to be a builder.  What if you were the only good thing that someone came into contact with that day?  What if the interaction you have is the difference between hope, and despair?  Let your love be a brace. It will positively affect the other person, and you might just find it fixes something inside you that you didn't even know was broken.   

On the Eve of the Fourth Anniversary of Your Adoption

My precious baby girl,

On this night four years ago I wrote you a letter.  I spoke about my love for you.  I spoke about my hopes for you.  I spoke about how hard we fought for you.  For your life.  For your health.  For stability and consistency. 

I want you to know, I've not stopped fighting for you.  I've not stopped loving you.  I've not let go of any of my hopes for you.  And I would not take back choosing you for a daughter.

You have endured so much in your short life.  I often look at you and wonder how it is that you have survived.  I often wonder why God thought I was good enough to handle the force that is you.  I often worry that my strength could never outweigh yours.  I worry that one day the pain will overtake you and that I will loose you.  I worry that you will hate me for not protecting you when I could have... for being blind to the hurts that I unknowingly allowed.  I worry that my moments of sheer frustration, those times when I just don't know what to do...how to help you... how to save you from your own head...will cause you to see me as an enemy.  I worry that the medications we give you to help quiet the chaos will harm you and that one day you will resent me for it.  I worry that I'm missing something... that my gut is failing me...that I'm not the person who was meant to be your mom after all... that someone, somewhere, somehow... made a mistake, and that that mistake was me.     
But I want you to know, I've never stopped fighting for you.  I've not stopped loving you.  I've not let go of any of my hopes for you.  And I would not take back choosing you for a daughter.

You have an amazing sense of humor.  Your smile is infectious. I've never seen someone want so badly to understand and feel love.  Oh how so many take that for granted... being able to feel love.  How I wish that hadn't been taken from you.  How I wish that on the day we adopted you that piece that was broken so early on had been fully restored.  I know it will be, in time.  How I wish on the day we adopted you that you never would have to know hurt again.  But life doesn't work that way.    

I want you to know, I've never stopped fighting for you.  I've not stopped loving you.  I've not let go of any of my hopes for you.  And I would not take back choosing you for a daughter.

I have no doubt you were made for great things.  I know that no power of hell, or scheme of man, could ever pluck you from God's hand.

And on this night, on the eve of the fourth anniversary of your adoption into our family, I want you to know this:
   
I will never stop fighting for you.  I will never stop loving you.  I will never let go of my hopes for you.  And I would never take back choosing you for a daughter.

I love you.

Miley, Robin, and My Thoughts

I had no intention of writing a blog about Miley Cyrus and the VMA’s.  There are plenty of opinions on Facebook, Twitter and various other social media sites. And honestly I usually don't put too much thought into pop culture. But I read a comment from Robin Thicke’s mom tonight that set me off.   So, I'm going to share some thoughts on Miley Cyrus and Robin Thicke.   

Miley:

I was 20 once.  I made lots of choices in my late teens that put me into some potentially dangerous situations.  There are things I did that I can’t take back, that I can’t change, that I can’t redo.  I don’t regret my journey – it prepared me to be the wife, mom, friend and woman I am today.  I needed to rebel.  I was just lucky enough to do it before Facebook, and not in the public spotlight.  I can’t fault Miley Cyrus for testing the waters, for pushing boundaries and seeing what she can get away with.  It’s part of growing up.  But I’m not a teenager anymore.  And I’m not 20.  I’m the mom of two impressionable young girls, and one impressionable young man who love Miley Cyrus.  Not the Miley I saw on the VMA stage, but the Miley who used to grace our tv and radio with her silly antics and spunky personality.  As a family we have had to accept that everything has changed and we can’t grow with her, that she became an adult and made a choice to leave her younger fan base behind.  And that’s ok.  I get it.  I really do.  I understand not wanting be seen as the little girl who sang of reaching for the stars and country love.  To be seen, and appreciated, as a woman.  Here’s the thing though… the departure was extreme.  Maybe the Miley we see now is the Miley that was always there, being pushed down by the Hannah brand.  But I don’t think it is.  What I see when I watch her on stage, or read her tweets, or look at her Instagram pictures is someone who is speeding head first into a brick wall.  And that worries me.  It worries me because I watched her grow up.  It worries me because I recognize the journey but I don’t see any exit’s on the horizon.  It worries me because I’m a mom and as quickly as her life changed… so too could that of my girls.  If I could tell Miley one thing, it would be to respect herself.  And regardless of what society tells us, self-respect doesn’t come from dressing in near nothing and grabbing our crotches.  Self-respect comes from loving ourselves enough to understand that our behavior affects others around us, that our minds are far more amazing than anything our bodies can do and that dignity is a powerful thing.  At the end of the day I know that my opinion is just that, and I have no right to request anything of Miley.  I know that she is her own person, and I would never want her to be perfect.  I understand that her journey is just that, hers.  I just hope that the end result of her journey brings discernment, growth, and wisdom.      

On to Robin:

It really shouldn’t have come as any surprise that a guy who produced such a raunchy song and created a music video fully clothed while surrounded by nude women allowed himself to be groped and twerked by a scantily clad young woman on stage.  What is surprising is the amount of flak Miley Cyrus has received versus him.  His mom was reported as being upset that Miley rubbed her bottom on her son, that it was not appropriate.  At no point in time did she reprimand her son.  This wasn’t a shock to Robin.  He knew exactly what was going to happen.  He knew that Miley would strip down and molest him.  And he was perfectly ok with it.  And apparently society was ok with him letting it happen.  Even his mom and wife were ok with him letting it happen.  But it’s Miley that is a whore.  Seriously?  He’s an almost 40 year old man. He’s married and a father.  His behavior was incredibly disrespectful to both his wife and child.  This is one of those times that our culture again feeds the misogynistic beast.  Robin Thicke is teaching young men that it’s ok to use women, that they are nothing more than accessories to the male ego.  And he’s teaching young women that they are only desirable if they are naked or dancing around him.   And our culture is eating it up.  We talk about feminism, and women finally being powerful and strong, and respected, and then we send songs like Blurred Lines (which admittedly has a catchy tune) up to the top of the charts, and then chastise the female part of an inappropriate duo.  It’s not ok.  But Robin will tell society that “you know you want it”, and society will sit and lap it up.     

I’m frustrated.  Neither the antics of Miley nor the behavior of Robin is anything new.  The reactions are no different than they were years ago when Madonna sang about being a virgin, Janet Jackson “lost” her top or DMX rapped about rape.  In a culture where free speech and artistic expression are honored (and it’s important that they are), what line can be drawn?  At what point does accountability come in?  Why do we have different rules for artists, athletes and politicians?  At what point do we have the right to demand that men are held to the same standards that women are?  Does anyone even want the status-qua to change… or is it just easier to let it go and move on with life as is?  

I Didn't Give My Son Autism

Someone sent me a blog yesterday.  It was from a website where women who consider themselves thinkers write about their personal journey with Autism.  I want to start by saying I have absolutely no problem with people of like minds getting together to share their struggles.  And anyone who knows me will tell you I am incredibly opened minded and I am willing (and usually do) look at all topics from varying points of view.  But this blog, and this website, frustrated me.

First off, I will take to task any parenting group that asserts that if you do not agree with them on all counts, that you are somehow a Negative Nellie who is unwilling (you could also switch unwilling out for uneducated or unenlightened) to see the truth.  I will take to task any parenting group that states in their "Rules" that if you don't agree with them that you need to leave and take your "negative juju" elsewhere.  And I will most certainly take to task any parenting group that pushes their beliefs in such a way that causes someone who is struggling to be made to feel unwarranted guilt, or that they somehow failed their child.     

Let me be clear.  You are welcome to have your beliefs, just as I have mine.  But do not use those beliefs as weapons.  Do not use shame, guilt, or fear.  Do not play on emotions.  And do not attack the core of who a mother is and her role in the life and molding of her child.

I want to say this too.  I am a thinker.  I am educated.  I am well rounded.  I have walked around the block many many times.  I have been to hell and back.  That doesn't make me an expert.  It just means I've lived.

I'm not going to link back to the blog, because I don't want to give it any more attention.  But I will give a synopsis of what the author posted.  This mom has a child with Autism.  And it is her belief that her choices during pregnancy and in the early stages of child rearing, gave her child Autism.  She references getting ultrasounds.  She references drinking soda while pregnant.  She references having a c-section.  She references giving her child Tylenol.  And yes, she references vaccines.  She asserts that all of these things (and a few others) created an invariable s**tstorm called Autism.

Here is what I think.  Could she have given her son Autism?  Sure.  If she carries the gene.

Now I will share this.

 My first child:
I took anti-nausea medication and drank alcohol during the first two weeks of my pregnancy because I was on a cruise ship and had no idea I was pregnant.  While pregnant I ate a quart of sherbert every night in a hot tub of water.  I ate tuna, because at that point it was still an ok food.  I was given a shot to speed up the development of my son's lungs so he could survive if born early.  I had pitocin.  I had an epidural.  I actually had a double epidural because the first one fell out.  My son was fed a bottle while in the hospital.  He was jaundice, and I let them put him in an incubator under lights, even after we had already been allowed to take him home.  I stopped breastfeeding after a few months.  He was allowed to cry it out after about 5 months of age.  My son got all of his vaccines, and when we found out a few years later that one of them didn't take, he got a broader spectrum version.  He got the flu shot, every year.  He was given flouride.  I even gave him processed foods.  He is Autistic.  But not because of the choices I made.  All of the choices I made for him were made in good faith, and with an understanding that I was doing the best for my son given the information and knowledge I had at the time.

My second child:
I got pregnant 4 months postpartum. She was high risk, and I had many many ultrasounds.  I even had level 3 ultrasounds.  I ate a ton of MSG laden Chinese food, mainly crab rangoons, almost every day.  I drank cookie and cream milkshakes like they were water.  I took hot baths.  I endured a lot of stress, including moving North.  I'm fairly certain she got the shot to speed up lung development as well.  She was born in the hospital.  She ended up in the hospital a few months after birth, and I let them treat her with steroids and oxygen.  When she was only a few months old, she fell out of my arms and down the stairs.  I breastfed her for only about 6 months.  And then she had formula.  She had all of her vaccines, and the flu shot.  She cried it out, although she was older than my son and the method was different.  She didn't get as much face time as my son did.  She liked to watch tv, and I let her.  She was given fluoride, and ate processed foods.  She's not Autistic.  She is gifted, and very well rounded.  All of the choices I made for her were made in good faith, and with an understanding that I was doing the best for my daughter given the information and knowledge I had at the time.

My third child:
I didn't birth her.  She didn't grace me with her presence until she was already 6 weeks old.  Her birth mom made a lot of actual poor choices, ones that involve heroine and large amounts of alcohol.  She lacked prenatal care, and she didn't pay attention to anything that was put into her body.  After my daughter was born she was neglected, and moved from one home to another until she landed with us.  She was malnourished, withdrawn, a shell.  Once with me she was cared for much like my first two children, albeit with more input from her biological parents and the state.  Their choices for her included sleeping alone (we didn't, we co-slept with each of our children), formula, and processed foods.  She had all of her vaccinations, and her flu shots.  She took field trips to prison.  She was in the hospital several times, she even had a cat-scan and a sedated MRI.  She is not Autistic.  She has struggles as they relate to being born drug addicted, and experiencing trauma.  All of the choices I made for her were made in good faith, and with an understanding that I was doing the best for my daughter given the information and knowledge I had at the time.

What is my point in all of this?

Your choice to drink soda, to have necessary medical interventions, the way in which you gave birth, the decision to immunize... none of that caused your child to be Autistic.

Your child is Autistic because your child is Autistic.  Stop searching for reasons.  Stop blaming.

Just like my 2nd child has blond hair because her father does, and my 3rd child has blue eyes because her birth mother does.     

If you want to get angry, if you want to fight a battle, if you want to change the world, start with the moms who really do make choices that hurt and harm their children.  Work with teen moms, under serviced moms, drug addicted moms, moms in domestic violence, and moms who don't have a basic understanding of parenting and the needs of a child.

Stop attacking yourselves.

And please, stop asserting that your child can he "healed" from Autism.

The best thing you can do for your child, and for yourself, is to get to a place of acceptance.

Get to a place of loving yourself, so you can love your child.

Get to a place of understanding what the diagnosis of Autism means for your child.

And what it doesn't mean.

The moment you accept that your child is who they are, simply because they are who they are, is the moment YOU can be released from the task of fixing, and shift to the task of loving and supporting.

To a place where you are able to get them the resources and interventions they need to succeed.

Why does my son have Autism?  Because he does.

And I'm ok with that, because I am ok with who he is. 

The Perfect Mom

My heart is breaking for you. 

Yes you, the woman reading this who is convinced she screwed up in some way that will forever and irrevocably change the course of her child's life.  The mom who lost it today, who said the one thing she swore she would never say to her child, the mom who threatened, the mom who screamed so loud the dog barked.  To you, the mom whose child threw a tantrum in the store, the mom whose kid stole a pack of gum, the mom who got a note from the school that their child hit someone, to the mom who who got a call from the police.  To you, the mom who walked away from a crying child, the mom who didn't intervene fast enough, the mom who was just handed a pregnancy test, to you, the mom who was just handed a drug test.  To you, the mom who hid in the bathroom for 5 minutes peace, to the mom who just drank soda while pregnant, to you the mom whose child broke an arm on the trampoline, to the mom who didn't change a diaper fast enough.  To you, the mom sitting outside while her child throws a tantrum, and to you the mom who just gave in because you are just too tired, to you, the mom who didn't bring baked goods to the teachers.  To you, the mom who has done everything right, yet life still happened.  My heart breaks for you.

I want to say something that I want you to let take a minute to let sink in. 

You are not alone. 
There is no perfect mom.
You are not alone.

Say it.

I am not alone.
I am not alone.
I am not alone.

Now do me a favor.  Cut yourself some slack, and in the process cut your fellow moms some slack.  I've noticed something so interesting in the "mom culture".  We beat up on our own so much more than any other outside group possibly could.  We sit and judge.  We compare ourselves to everyone around us.  We set ourselves up for defeat.  We are so eager to outdo one another, to prove to anyone that will take notice that we are doing something right (and that they are doing something wrong).  We keep our fears, our battles, our struggles silent for fear that others will consider us not good enough.  The guilt blanket we place on ourselves and each other is so heavy that we are drowning.

I want to let you in on a not so secret secret.  And let it resonate with you.

I am not a perfect parent.
I am far from perfect.
I am a good enough parent.
My kids will make mistakes.
I want my kids to make mistakes.
I will love them through their mistakes.
It will be ok, because I allowed them to see my mistakes.
I apologize to my kids, because I am not perfect.
My kids are not perfect.
I don't want to be perfect.
I don't want my kids to be perfect.
I want to be human.
I want my kids to be human.
I am not a perfect parent.
I am far from perfect.
I am a good enough parent.
And that is ok.

There is something else I want to share with you too.

Things will happen that you can't control.  There will be a lot of things you can't predict, that you can't plan for, that you can't stop from happening.  Some of these things will be bad, and some others may see as bad but you will see as an amazing blessing.  Those things are all part of the journey your child is on.  And while there are moms out there who really do make choices that hurt and harm, the reality is that most of us aren't those moms.  Not even you.     

Grace.  Allow it to be extended to you today.

Take a deep breath.  Go find a quiet spot. And eat a cookie.

And when you are ready, go back into the chaos and smile, knowing you aren't alone.