I know this sounds crazy, but I’ve read about this about a year ago and I’ve NEVER stopped thinking about it.

Scientists are researching a protein in the Chilean Rose Tarantula’s venom that might hault the progression of Duchenne Muscular Dystrophy.

Here is the article to read:

I have a really, really strange theory…and it came over me when I FIRST read this article which was just a short headline probably 6-12 months ago. I thought….that’s so crazy!  And then I thought about it for a while longer. and I had this crazy thought pop into my head.

What if…..and this is a HUGE what if….

What if GOD made it so that of the millions and millions of animals and plants, etc that are on the Earth are all here for a specific purpose and something as crazy as spider venom will help to cure something like Muscular Dystrophy. and what if all the cures to life’s most horrible and tragic diseases lies in our ability as humans and scientists to figure that out. What is other animal proteins or plant proteins, could be the answer to many other illnesses.

I know, crazy right?!

Well, it was just a thought that popped into my head and when I saw this article out today, it made me think of it all over again.

I really don’t think it’s the strangest thing….maybe, just maybe.

So, I guess that means that I better get over my HUGE fear of spiders now….right?!

Original Article HERE.

I recently read this article and it resonated so deeply with me that I just HAD to share it.

I see you.

And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.

I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.

Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.

A feeling like none other you’ve experienced to date.

“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.

And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.

This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.

You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.

You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.

Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.

Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.

You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.

So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.

You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.

Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.

You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?

You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.

Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.

Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?

Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.

The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.

Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.

So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.

And I know this because I am you. Not now you, of course, but future you.

Original article here.

I started this website talking about Jackson and the diagnosis with Duchenne Muscular Dystrophy, but we had a story way before that fateful day, so I think it only makes sense that I start from the beginning with Jackson.

To read about the Duchenne Muscular Dystrophy Diagnosis, click here. 

Jackson was born on April 17th, 2008

I went into labor the night before with him when my water broke at 4:45pm

I was in labor for 12 hours when he was finally born the next morning at 4:55am.

He was so adorable, had a TON of hair, and we immediately fell in love.

The first 3 days were great, but then after that everything quickly became difficult.

Jackson had a ton of feeding issues and I was in the hospital working with the lactation consultants like crazy.

He was losing weight, but refused to nurse.

I ended up having to pump and giving him milk that way and supplementing a little as well.

After every time he would eat he would then scream so intensely, for 1 1/2 – 2 hours, after EVERY feed.

I could tell he was in pain and thought it was gas, so tried a few different problems for that.

He ended up having some horrible colic that lasted until he was 4 months old.

It was SUCH a difficult time and it really made me question myself as a mother.

Once we finally found a formula (Nutramigen) a hypoallergenic formula and then mixed that with acid reflux medication and it seemed to do the trick.

Only 4 long months of colic and then we were on a much better path!

From that moment on I felt like there was NOTHING that I couldn’t handle, I’d already got through the most trying days with him, so I had no more fear looking ahead.

Everything was smooth sailing for quite some time.

It was around 16 -18 months that I began to have mother’s intuition and had a feeling that something might be wrong.

There were a few clear things that made my days extremely difficult and that was mainly the horrific meltdowns everywhere we went.

There was also the fact that Jackson wasn’t really talking at all and there was a complete lack of eye contact.

I am a lover of books and noticing these few things, I began looking things up and thought it could possibly be autism.

I enrolled him in an early intervention program for some guidance and it wasn’t the best fit for us.

Since he had no known diagnosis yet, they would almost use him as a guinea pig and try different things on him,

and more often than not I would pick him up and I would hear him screaming from an entire hallway over.

I still have a hard time with weighted vests…haha

I took him out of there and began doing private speech therapy.

We went a few times a week and in the meantime I researched the right doctor and found an autism expert in Ann Arbor, Michigan, named Dr. Solomon.

We would have to wait quite a long time before we could get an appointment and in the meantime Jackson saw many other doctors, but no answers came from any of the appointments.

Just frustration, fear, and tears.

After waiting months before we could see him,  Jackson finally got in, he was 2  1/2.

We spent 3 hours with the doctor, he assessed Jackson, played with him, got a sense of who he was, and it was a WONDERFUL appointment.

We walked away with a mild autism diagnosis and actually what should have been a dark, difficult day was actually a relieving day.

I had known for the last 8-10 months that something was off, but no one could figure it out.

It took an autism expert of 20+ years a couple of hours and he could tell me exactly where Jackson was and how we were going to get him better.

I learned that there was a school for children with autism that is ranked top in the country because of all the services they get:

Speech therapy

Occupational therapy

Physical therapy

ABA therapy

and Dr. Solomon’s approach, The Play Project

Not only do the children get time for socialization with other peers, they also get half the day one on one with a teacher.

They also had a giant play room/ sensory center that the children just LOVED. He began school when he was 2  1/2 and remains there currently.

He will be leaving in June and then beginning kindergarten in the fall.

To see the progress that came out of this school, followed by therapies at home, and also incorporating a biomedical doctor with supplements, Jackson has changed 180 degrees.

He is such a wonderful, sweet, calm, inquisitive boy. The teachers are amazed at his progress, as are we.

It’s not to say that the whole autism diagnosis was a piece of cake.

After being relieved to get the diagnosis and start receiving the right therapies, there was a lot of emotions I had internally.

I didn’t want to tell anyone that he had this diagnosis.

I didn’t want people to discount him, to think that he is unteachable, or to think that he can’t comprehend what was being taught to him.

It was so excruciating when other parents would ask why he wasn’t talking {he also is huge for his age so he looked 1-2 years older).

It took me quite some time before I told anyone about the diagnosis.

I just wanted people to love him and see him for who he was, not a label.

I read just about every autism book I could get my hands on and tried everything you hear about.

It was actually how we got to the Duchenne diagnosis,

we were meeting with our biomedical doctor, about to begin supplements,

when she ran that bloodtest and it went awry after that.

 I have learned that in this life you have NO IDEA what is going to be given to you.

You just have to consciously make the choice to move forward, be happy, have faith, and know that there is a greater plan and that it will all work out.

All is Well.

To learn a little about Duchenne, here is something I made up for Jackson’s new school, read here.