Children with disabilities

“I’m feeling overwhelmed”…is an understatement.

Do you ever have days where you just feel like you’re going to explode? I don’t think I have any tears left to cry. I feel like if someone looks at me one more time with pity or sorrow I’ll burst. It breaks you and I am not as strong as everyone wants me to be or believes me to be.

The sheer force of stress I’m experiencing and overload of information in the past 3 days is purely indescribable and this is only the beginning.

I want people to understand how I feel and what I’m going through but truth be told, you can’t. Unless you’ve watched your child get stuck with a needle for an IV multiple times to find the right vein, you can’t. Unless you’ve had to watch your child scream and thrash as a nurse shot liquid sodium down their throat, you can’t. Unless you’ve had to pin your child down to prick their tiny toes to test their blood, you can’t. Unless you’ve had to weigh and measure every ounce of liquid and every gram of food/medicine your child consumes, you can’t.

Truth is, I envy you. It’s as simple as that. I would give anything I could to not know what any of this is like. I thought once we were past the NICU and the shunt surgery and the cranio surgery we would be done. I thought the medicine would stop the seizures, it didn’t. I want to cry and run away and curse whatever God I believe in for all of this. How did we get here? Why are we here, at this point? What did we do to have this life? Why does Emma have to suffer and go through any of this? She is innocent in all of this and yet she is the one that must suffer. I don’t understand it. I don’t accept it. I hate it. And I’m jealous of anybody who has not experienced the pain I’m feeling and the sadness and hurt in my heart for my little girl.

People keep telling me we had Emma for a reason and she chose us as her parents. I want to believe that and I know there are children that have it way worse than Emma but can we catch a break here? Can my kid have just a moment of some sort of normalcy? I just want her to know what that’s like. Is that too much to ask?

3 thoughts on ““I’m feeling overwhelmed”…is an understatement.”

  1. You are not asking for too much when you say you want Emma to get a break and you want to experience a moment of normalcy. Nothing about this is fair or easy. The most painful thing I’ve ever experienced is watching my daughter have seizures and not to be able to stop them. Holding her down for procedures fills me with dread and still makes me physically ill. She’s so strong now that it takes 3 people to change her g-tube. When she accidentally gives me a swift kick, I can’t really blame her.

    It is overwhelming right now. And, you are right. Most people, most parents, have no idea how much stress and determination you experience in even 5 minutes of your day. Your Emma is a beauty (Loved seeing her eyes open with that light up toy!)

    If there is a way for you to take some time to go for a walk or do something outside of the house – just for you – it would be a way to recharge a bit. But,
    then, I bet you know that.

    We had these times when Eliza was a baby. I was often at the end of
    my rope. Many times it felt like I was drowning and people tried to “help” by saying – “Hey. You’re drowning. Here’s a book about how to build a boat.”

    Times like that honed my dark sense of humor and made me realize I no longer cared about what people thought.

    No one can know what you are gong through. From one mom to another, I am so sorry you both have to suffer. It doesn’t make any sense.

    I wish you both easier days and times when you can just enjoy each other and your life together.

    Liked by 1 person

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