I was angry. Black cloud following me everywhere I went kind of angry.

I had stopped posting updates on Peanut because I was getting too frustrated with people saying “I knew she could do it” or “of course she did!” when I announced an accomplishment. I would think, “No. No, you don’t know. You have no idea. You haven’t been here for the last month while we struggled over and over again through the tears and failures that led up to this one moment. How can you just sum this moment up so casually?!” And when someone would say , “It can’t be that bad.” or, “Can’t she just do this?” I would want to fall apart and cry. I would think, “How can they think this is so simple?”

I would hurt for Peanut because the first thing many people would talk about or ask about was her disability. And many would point out what she wasn’t doing or can’t do and told me what I should do to “improve her life”. I would feel the weight of the world on my shoulders trying to satisfy everyone. Trying to explain why we’re doing this and not that would exhaust me, but I didn’t want to let anyone think I was doing anything less than everything possible for Peanut.

People would ask for updates as if they deserved it. Even when nothing “big” was going on. As if she was some ongoing experiment. And when I was vague, some would push as if I was being rude not to keep them informed. And it hurt so badly every single time.

There were so many suggestions. ALWAYS suggestions. ALWAYS ideas. So many. So many that I began to think that people thought we weren’t doing enough. Because why else would they keep telling me about more and more and MORE? It began to hurt too much, so I stopped posting things. I stopped sharing. I pushed everyone away because I couldn’t handle it without burning down bridges.

And most of all – It would disappoint me to the extreme when people never thought to ask what Peanut wanted in all of this.

So that’s when I removed myself. I took the deepest, most calming (metaphorical) breath of my life. I let all of the worry, anxiety, frustration, anger, offense and sadness out. And an amazing thing happened.

I didn’t care anymore.

I didn’t care what everyone else thought.

Not in a “bugger-off I’ll do what I want” kind of way. But in an “agree to disagree and move on” kind of way.

I have taken time to just breathe and realize that, no, people probably never really will understand. And that’s okay. They don’t need to understand. Understanding is irrelevant. What’s important is supporting Peanut and encouraging her. And I have learned to teach people the right way to encourage her. To set their expectations to her level, not theirs. To respect what she wants and needs. That maybe she can’t handle this overwhelming regiment of therapies, miracle cures and testing because she is a three-year old little girl with three-year old little girl needs. And many of them have nothing to do with her special needs.

I have realized that speaking up, no matter how much I don’t want a person to dislike me or my views, is imperative. And I have realized that speaking up doesn’t always mean a fight. Most people aren’t looking for a fight. They’re looking to understand because they want to help. And that’s something I can get behind. So I have been speaking up when necessary and shutting my mouth when necessary. I have been educating and correcting where I felt necessary. And I have learned that if someone is going to dislike me or my views on what’s important for Peanut, then that’s their problem to work through. Not mine.

And you know what? An amazing thing is happening. People are understanding, respecting, stepping back or stepping up.

Ironic, huh?

Most people never will truly understand what we go through on a daily basis. And I have realized that that’s not my problem. Nor is it anyone else’s. The only one who matters in all of this is Peanut. And if she’s satisfied with where we’re at, then that’s good enough for me.


A Turn of Events [part 2 to Lion’s Den]

In a surprising turn of events, Husband has asked me if he could take Peanut to the hospital tomorrow. As much as it pained me to let go of the reins, I said yes.

You see, Husband is the last person you would ever find in a hospital, voluntarily or otherwise. He is a wonderful man, but he just can’t handle healthcare or healthcare buildings. He avoids them like the plague. That’s why this request really struck me. I think he knows how hard this is for me to go back and have to fight another fight for our Peanut.

Normally I would be afraid to let someone else take care of her because I need to be there in the midst of everything and I need to know what’s going on. But this time I just don’t know if I can go without getting genuinely upset. My reserves of “strong Mom” are pretty low, and as much as I hate to admit it, I could use some help.

So, I will be spending the remainder of the night coaching husband on everything he will be doing tomorrow down to the way he walks if I’m not satisfied with it. He will be bringing every single comfort item and snack I pack for Peanut without complaint. He will be getting up at a god awful early hour to get ready and get down to the hospital to check in by 8 AM.

He has been graciously allowing me to call the shots. Once again, I’m so grateful to have such a wonderful husband. He will be calling me with updates and taking notes along to pass on to the different clinics that I was going to “do business with” while I waited for the MRI to finish.

I’m terrified that something is going to slip through his fingers or he will forget to ask something, but he kindly pointed out that I need to give him an equal share of the parenting once in a while.

He’s right. I can’t do everything.

So, I will fortunately/unfortunately be sitting this trip out tomorrow and biting my nails down to nothing while I wait eagerly by the phone for calls from Husband to update me on Peanut’s progress.