I "met" Michelle through this blog.
She reached out to me some time ago and we've been fast friends ever since.
It's funny how you can feel that you know someone that you've never met in person.
But I feel like that.
She is good people.
And I asked her to share her incredible story with me. With you.
Haden was born a perfect baby boy on Dec 12th, 2003. The first 9 months were heaven. I remember all of his milestones, took pictures, wrote everything down. At 9 months he is putting words together. With his little fingers waving he would say "bye bye mommy".
Those would be some of the last words that Haden would ever speak to me.
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| sweet Haden {look at those eyes!} |
Going into his 10th month we decided to take our first family trip . Florida was too far a drive so we decided on Tennessee. I brought Haden to the doctor to make sure all of his vaccines were up to date. He needed his DPT shot, so like a good mom he got it. It was this that changed our life forever.
While in Tennessee, Haden fell asleep in the car; when he awoke he said "hello sleepyheads!" but
he didn't look at me??
Then, his eyes rolled up into his head and his arms and legs starting shaking. I had never seen a seizure before and thought Haden was having a heart attack. I got him out of the car seat and was screaming at my husband Jamie to stop the car because something was wrong. I didn't know what to do so I jumped out of the car and ran with him in my arms down the road...looking or someone to help me. Luckily, a lady stopped at a stop sign saw me and quickly got out of her car and ran towards us. She grabbed me and looked at Haden and told me he was having seizure.
She directed us to the nearest hospital.
Haden's seizure stopped and we were in the hospital searching for answers. Why did Haden have 104 degree fever. What made him so sick? When we left Canada he was healthy? Where did he get the sickness in August? He didn't go to daycare. Wasn't around any other sick kids?
The doctors didn't have any answers for us. They did a spinal tap to make sure he didn't have meningitis . They gave him Advil. Tylenol. Antibiotics.
He was one sick little boy.
The drive home was the longest car ride I have EVER been on.
Finally back home.
More seizures. Not sleeping anymore. Not babbling anymore.
I wasn't hearing his voice anymore.
Sono's, EEG's, strobe light testing, blood work, genetic testing, food allergy testing..you name it he was tested.
He was assigned a neurologist.
His diagnoses was epilepsy and he prescribed phenobarbital . First drug my sweet boy ever got into his system. What a nightmare.
He totally changed from a little baby that slept the night to a baby who could not settle himself.
We tried everything! Rocking, car rides, swings, wrapping him up in blankets, sleeping on the floor with him NOTHING worked. The only way I can describe Haden trying to fall asleep was like watching someone who's skin was on fire!
I cried so much because I felt like I wasn't doing my part as a mom. I wasn't helping him, I prayed so many times to God to please help him sleep.
After almost a year of this torture we switched doctors and meds. Finally, a new drug, clobazam.
It was an answer. For 3 years Haden went seizure free.
Things settled down and he started to get some language back. But he wasn't doing the things that little boys do. Instead of playing cars or trucks he started to spin balls on the floor.
I thought, wow, that's pretty cool. He could spin several of them at the same time.
He also wasn't too interested in other children or even talking or looking at me anymore. So many times I would hold his face and say "look at me Haden!", It was almost like it pained him to do so.
More appointments. More specialists.
And in my gut, I knew.
Well, Mr. and Mrs. Scott your son has autism.
There it was.
The A word finally out on the table.
My heart sank and stomach had a huge knot in it. To this day that knot in my stomach has never left...truth.
Coming home Jamie and I didn't say one word to each other. It was a fog really and I don't quite honestly remember much. All that I knew was I had to find a way to help him....fast.
I read stuff on diet, supplements, really crazy treatments, HBOT, swimming with dolphins, riding horses in Nepal, stem cell treatments in Costa Rica.
It was a world that was so foreign.
During this time I was really struggling emotionally , I cried so much, I prayed at the foot of Haden's crib nightly.
I would ask God to please give me a little of him back ,
Please don't take everything from us.
Please help him God. Help our little boy.
It's hard to write this, very hard. I told Susan that it would get to a point that I would have to relive moments and that time in my life was not a happy one. We were both sad and grieving.
You see, you grieve the child you thought your were going to have, or grieve the life that you thought you were going to have.
I never signed up for seizures, tests, oodles of doctors, specialists, drugs.
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| Michelle {isn't she gorgeous?!} // Michelle + her husband, Jamie |
Other moms I knew were having children and I just didn't fit in with them.
They would talk of things their kids were doing and Haden wasn't?? I had a hard time with everyone, because I had so much anger.
I had so many really stupid comments said to me by "well meaning" moms.
Have you tried this?
Have you done that?
What did you eat when pregnant?
Or my personal favorite, "you know I wouldn't care if a had a baby with special needs, but it would be downs that I would pick"
Can you imagine picking your disability...why not autism?
Got a thing against autism?
TO BE CONTINUED.
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| one of Michelle's favorite photos of Haden |
Thank you Michelle for sharing part 1 of your incredible journey with us here today!
I know each and every mama reading this shares your pain and is in awe of your strength.
Love you beautiful girl.
xo
