It's midnight. I am exhausted. Sitting vigil with Lily counting seizures and breaths. I don't poetic tonight. I feel broken.
I feel...helpless.
Frustrated.
Irritated.
Angry.
So many emotions. Words swirling in my head.
Failure
No Fair.
Desperate.
Sleep.
Exhaustion.
Worry.
When you run out of words there are often just tears. That is where I am tonight.
Tears.
In the dark.
The only sound is her steady breathing.
Every few minutes a moan, a gasp, a jerk.
Unsteady breathing.
Then back to normal.
What is normal? I don't even...can't even...comprehend that anymore.
It's probably very boring. That is what I tell myself. Normal is terribly boring.
It's okay to cry though.
About how unfair this is.
About how helpless you feel.
About each day you loose more and more of the dreams you had of the typical child you wanted.
Typical is like normal. Who wants normal?
These tears are healthy. As long as once they are shed, I pick up my emotions and take a step forward once more.
Tonight though I get to cry. I get to be weak. I am allowed to feel all those things I have to hide during the day. I am able to think the thoughts that scare me the most.
Like waking up one morning to find her blue.
Like her wandering off.
Death.
That is my real fear. Not just because of the seizures. But...
Her fevers. Her genes. Her immune system. Her desire for adventure mixed with little sense of danger.
I want her to outlive me. She will. I wont accept anything less.
There are so many things though.
My thoughts are so scattered tonight.
Brain fog has set in.
1am on Saturday morning.
I haven't been to sleep since 3am on Thursday.
But my eyes wont close until someone else can take my seat and watch her breath. Count her seizures. Pray that she doesn't give up. Take the steps needed if the fight is too strong and she is on the loosing side.
It's Mother's Day Weekend.
All I want is for my child to not be in pain. To not have a "glitchy" brain. To run and play without paying for those dear moments. To never have to stick another needle into my child. To not have to take a tool kit of emergency items where ever we go or have to calculate the quickest route to a hospital from where ever we are.
Forget the flowers. I want peace.
No chocolate. Maybe a break from reality.
No jewelry either. A cure? Better treatment?
Though you know...the
Firefly dvd would probably make me smile!
An encouraging word goes a long way.
So does a hug.
Or someone to say "I don't understand but I am here for you."
"How can I help?"
"Would Zoey like to come play?"
"Can Lily go to the park with us?"
"Let's talk while the kids watch a movie/play"
You know another thing on my mind?
Since my post last night and even one earlier tonight...
I keep seeing how brave people think I am. How strong I am. What an amazing mother I am. They say they couldn't do what I do.
But you know...I am nothing special.
I am a mom just like you.
You would do the same if this was your child. These were your children.
You would stay up all night.
Fight for them.
Do whatever it takes to protect them while giving them room to spread their wings.
I spoke with my oldest sibling today. We were really close growing up. But we are so different now.
I asked if he knew anyone that would mentor Zoey. Help her grow and mature and be confident in her ability to succeed despite Dyslexia.
His words caused me...well...I had to pray before responding. I wasn't mad. More like...well...I don't know how to describe it honestly.
Nope. But I've found with boys that when they have issues it's sometimes better to just not tell them. Do things behind scenes but kids already have a struggle to simply fit in.
This is the rest of the conversation...
Me - I wasn't sure how to respond to your reply. So I've waited a day. I prayed. Thank you for your suggestion. Zoey knows she has Dyslexia. She knows she has trouble with words and how her brain processes certain information. I find that, in our experience that doing things behind the scenes doesn't help them accept who they are or embrace the person they are regardless of ability. While it is true that many children do struggle to fit in, teaching them to hide their differences is counter productive to acceptance of diversity. We are trying to instill the value of pure friendship and Godly relationships with one another. Teaching them not to ignore that their friend is different than them and instead raise them up and give them support. I also have found, with my girls at least, that doing things behind the scenes is stripping them of the opportunity to be functioning adults one day. My personal belief is to be honest with a child and provide them the tools to succeed. Zoey can take charge of her education and tell us when something isn't working or she needs more help. Who better than her to make decisions on what helps? My hope is to find adults that have embraced the fact they have Dyslexia but haven't let it slow them down. Positive role models to help her gain confidence. Ignoring her learning disability wont make it go away. That is like not telling Lily she has Juvenile Arthritis or Epilepsy. Just because I don't tell her, doesn't mean it isn't there or that she doesn't experience the pain and frustration of these conditions. Instead we have been teaching her to take control of her own health and be part of her medical decisions. She can successfully draw her dose of chemo into a syringe and give herself a shot. She finds empowerment in her wheelchair. In her knee brace. She knows these are tools to help her be the best she can given the medical problems she has. So again, I do value your response and I am glad that works well for you. Love you and good luck on your upcoming trip!
Bro - The problem is that you are creating the separation of the child from others. You are explicitly creating the condition of difference. If they are Dyslexic then they should have additional help. They should have an environment where they can learn to handle the situation. But creating a support group around them at that age simply creates a situation where they are constantly aware of the issue.
I'm confused with the wheelchair. They came over and played hard running around. Why a wheelchair?
Me - I don't want a support group. Role models are used in many situations. She lacks confidence in her ability. Giving her a strong image of someone who has overcome the same obstacles as she has cannot do harm. As for the wheelchair, I cannot say I am surprised in the lack of understanding especially when you only see her a handful of times a year. Lily is more complex than meets the eye. Have you ever read her page? Do you know what she struggles with? I can explain the wheelchair if you would honestly like to hear about it. I do not say this to be rude but it's not like either of us have taken an active interest in one another lives or children's lives in years. I regret this because my girls don't have that close relationship with her cousins that we had growing up but also because I miss what we had when we were younger as well. I would love to tell you all about Zoey and Lily. About myself. But I don't want to be judged or hear very closed minded opinions. I am open to hearing your thoughts or even suggestions if it is coming from the heart or at least with good intentions. We are two very different people, with very different parenting styles. I don't expect you to understand where I am coming from and that is okay. But if you would like to talk about the wheelchair...or maybe even Lily's genetics...or even that we homeschool...be supportive. You don't have to like the way I do things but I deserve respect and love. I offer up the same to you. I don't have to like how you do something or the way you want to parent, but I love you and support your decisions. If you aren't really interested in any of this then disregard the novel I just wrote and say " I love you, see you at Christmas." I will understand. We can be a complicated bunch. Sometimes it's easier to just not know.
He never responded. He might at some point. I was honest though. For the first time I was honest with someone in my family. I love my brothers. Their wives. Their children.
They don't know the day in and out of us. We all have our own struggles. I don't understand plenty about his life.
I'm letting my tears flow about this tonight too.
I wont lie.
It kind of stings. He probably isn't really interested.
I can explain 9 ways to Sunday but he wouldn't understand.
Because on Easter, she ran and played.
Because he didn't see what happened for the next week.
Because he doesn't ask about her.
We see each other on Easter and Christmas. Maybe a Thanksgiving here and there.
It's the whole "she doesn't look sick" mentality.
I really hate that statement by the way.
What the hell does "sick" look like?
Does she have to have swollen knees? Had you called or messaged in the week after Easter then you would have seen "sick".
Want to watch a seizure? How they can rob her of basic functioning? I'll even let you gently bathe her because she urinated on herself. You calm her down because she doesn't know where she is. Or who you are. Is that sick for you?
Maybe sick is when she was in the PICU.
And only a few cared.
It's not just my brother.
My dad feels the same.
And they have seen her in her bad times.
I am pretty sure they all think I am crazy.
I wish it was all in my head.
That would mean she isn't whimpering in pain right this second. That I am running on fumes because I just think it's fun to put my body through hell. If it's all in my head...does that mean all those medical bills will disappear?
Hey honey! Did you hear? We are in debt anymore!
I am kind of pissy tonight. Kind of bitchy too.
My filter got lost somewhere along the way.
I do realize I am rambling now...none of this probably makes sense to any one any way.
But this is real. This is behind the scenes.
Life isn't always fair. It pisses you off. You cry. You scream. You hit punching bags.
Tomorrow maybe I can sleep. And while I sleep, process all the craziness of the last few days.
For now though. I am going to dry my tears. Cuddle my child. And have faith that in the morning she will still be with me.
Hi, I'm Beezus and I am one hot mess! 
My girls are so adorable. Lily wants to be a PT/OT and Zoey wants to be a Midwife/Mom
This is what a super lazy dog looks like.
SASSYbutt
Zoey was excited to hang out after school. 
First injury of the summer season...
Last week at the Splash Pad! 
LOVING school! 
This is after a hard seizure. 
Stupid Seizures
Behind the scenes...this is sleep deprivation. Trust me...Zebra Moms don't always have it together! 
I really am loving my hair! And I need to find that lipstick! 
The day after the splash pad! 
This is our friend H. Her family went to the zoo with us. H has lots of medical conditions like Lily. We really are super proud of how these two girls did at the zoo! 
Two types of Zebra...the animal breed and the medical breed.
ROAR! 
I told her to show Mr. Adam how much fun she was having and he can show our Anonymous Angel that his gift of a wheelchair has been life changing!!
She had a blast. But the heat and exhaustion were getting to her. I show this to help others see that even with her wheelchair, she gets tired and hurts. 
This is stretchy skin. It's a physical trait of many EDS types. This is all over. 
OUCH! Sunburn...
And this is what the day after the zoo looks like...
Zoey left Theraputty on Lily's pillow. 
What happens when an EDSer helps her husband with the truck breaks...popped both ankles out. I am really used to this so it's easy to pop back...but now I am very sore...and bruised more than usual. 
