Today… the Girl is in Charge…


She’s turning eight.

The weight of that is hitting me. It means so many things, and yet it means nothing.

I’ve started blogs before. Blogs that didn’t last very long. The first one was – “Look at all the fun things our family is doing!” The second one was – “This is me feeling inadequate, but I’m still going to try to share my faith.”

But I need this blog to be different. I didn’t continue the other blogs for several reasons. Exhaustion. Convinced that nobody cared. Who was I to write a blog? Writer’s block. Depression. Yes, I said it out loud. Depression. Overwhelmed with everything else I had going on. Etc.

But as the Girl in Charge is about to turn eight, I think I’ve finally reached the point where I need to be honest with my friends and family about something.

This is hard.

This is really, really hard.

I’m a member of the Church of Jesus Christ of Latter-day Saints. And in our faith, turning eight years old is a big deal. That’s when a child gets baptized. That’s when, we believe, a child is old enough to be accountable for her choices. That’s when a child is ready to choose to follow Jesus Christ.

Does every child understand the commitment they are making? No, of course not. Do some children do it simply because their parents and peers expect it of them? Yes, of course. But I have found for most Latter-day Saint children I know, that this really is a very special time for them. It’s the beginning of their own journey of faith. And they really do feel the holiness of the occasion. And they really do come to know God better.

I experienced this with both of my older children, who I will refer to as My Mini Me and My Mini Man. Their baptism days were days I will never forget. Days where I could feel God’s presence in our lives in a very real, tangible way.

But the Girl in Charge? She won’t have a baptism day.

The truth is I don’t really care. I’m not sad about her not getting baptized. I’m completely at peace about that part of it. A child needs to be able to understand what she is doing when she chooses to be baptized. The Girl in Charge does not. AND a child needs to know not to inhale when her face is submerged in water so she doesn’t drown! The Girl in Charge also does not understand that.

So, I’m at peace with it. I really am. God will take care of all of that in His own time. But what I’m not at peace with is the reason why she’s not getting baptized. And what that reason means for my future. (Yes, my future. Selfishly, I’m concerned about me. I’m not worried about her future at all. She will be taken care of. It’s me. My emotional state that I wrestle with.)

You see, The Girl in Charge has… well… Charge Syndrome. She is, quite literally, the Girl in Charge. Hence her pseudonym and the name of my blog.

I wish I was in charge- a woman in charge of her own life, of her own destiny. But my daughter’s condition has made that really difficult. I know that for the rest of my life (for the rest of her life), her needs will dictate my choices- in fact, the choices of our entire family.

This has already happened in some very painful ways. The two that have been the most difficult to grapple with are 1) when my husband was offered a really incredible job overseas, something we were hoping would happen for a really long time. It was the opportunity of a lifetime. But upon researching educational and disability services for our children, we realized that the host country did not have the services the Girl in Charge needed. My husband had to rescind his acceptance of the position and it was devastating.

And 2) we uprooted our family and moved to a different town in the middle of a school year because the Girl in Charge had gotten too heavy to carry up and down the stairs. We looked and looked for the right house that wouldn’t disrupt life for our older children, but we just couldn’t find what we needed in our price range in our school boundaries. And then in the middle of winter, at the worst possible time of the year, we found the right house, but it required moving 30 minutes away from everything our children knew and loved.

It is safe to say that everything in our lives would be different if it weren’t for our youngest daughter. Her needs really do take charge. And at times, it is bitter. For all of us.

This is the part in my old blog where I would say, “But it’s okay, because I know God loves me and He’s really the one who is in charge, and I know this is for my good and everything is going to be okay.”

All of which I believe. But I’m not going to say it this time. Because that’s not what this blog is about. This blog is about me finally being honest. “Hi, my name is Susannah, I’m the mother of a severely disabled child, and it is really really really really hard. The end.”

I haven’t meant to be dishonest about how hard this is for me. I think subconsciously, it was easier for me to deal with the hard stuff if I didn’t let other people see it. But I just can’t do that anymore. Because the older she gets, the harder she gets. This is a burden I cant carry alone anymore. I need to let you all see me, the real me. Not the me who appears to have it all together and make it look easy. But the me who feels the weight of this trial so keenly that some days I feel like it’s going to crush me.

But as is her habit, just when I feel the burden of her care the heaviest, she does something that bursts my heart open with pure joy. Her dad was out of town last week, and this was how she greeted him upon his return.

Hello Daddio!

There she is. That’s my girl. And she is the Girl in Charge.

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