In Which There Is Whine, But No Cheese

Because I’ve not had cheese in a long time. No dairy either. Not since Nov 19, 2014! That’s 1 year and 1 week with no cheese, no yogurt, no milk. Hard to imagine, isn’t it?

(Fair warning. This is not a positive post. This is a whiney rant.)

My not-quite-three-year-old daughter was feverish and coughing and an emergency room visit showed her to be very, very ill. So she was hospitalized last week. She has a dreadful disease. Well, we think she has a dreadful disease. It’s not really a diagnosis, more a statement about what her body does.

Also they don’t know why this is happening. No known reason = idiopathic = terrible, terrifying condition.

She defied the odds and survived her newborn stage. She continues to defy the odds.

And she defies what should happen under these situations.

I’m tired. (Have been a while.)

I’m scared. (This is nothing new.)

I’m tired of being scared, and depressed, and worried.

I feel. . . like I’m drowning, or maybe like I’m suffocating. I can’t manage to put my head together or get stuff done. What am I supposed to be doing? How do I do it? When do I need to leave the house? What day is it?

What is wrong with my daughter?! Is the overriding question that constantly occupies my thoughts.

How much longer will she be with us?? For a while now (9 or 10 months) I’ve had this dread feeling that she won’t be with us much longer.

Her ‘diagnosis’ (I still can’t bring myself to accept it for her) isn’t pretty. Prior to the 1940s it was usually found by autopsy. Even now, survival rate isn’t very good. (With or without treatment.) She could die quickly or she could slowly decline before dying.

And there’s no national organization pushing for research and connecting families impacted by this thing.

She did so much better when we removed dairy and wheat from her diet but the doc insists that this is coincidental. And since she still breastfeeds (thank God!!) I began to avoid dairy in November too. In December we both started to avoid wheat.

Hence the cheese-less whine. Ya ever noticed how many comfort foods include dairy and/ or wheat?? Buttery mashed potatoes, macaroni and cheese, grilled cheese sandwich. Even chocolate. *sob* And there ain’t no equivalent substitute for cheese. (Sorry, Daiya.) Gluten free stuff is ok, but grainy and dry.

Meanwhile, she LOOKS healthy. She SOUNDS healthy. (Hear that? That’s my daughter screaming in the back seat. Yup she has lung issues. . . .)

This doesn’t make sense. In the hospital last week I told the doctor I was confused. “You’re not the only one.” Not really comforting. . . but then again it is, he’s willing to admit he doesn’t know what’s wrong with her. Or, what all is going wrong with her.

But we have to treat what we know is going on with her. *shudder* Even if studies show that the treatment does not have any effect on this condition.

Meanwhile we wait for the results of the last tests. And we wait to see if she is improving or, you know, not improving. : (

So Happy Thanksgiving to all. Count your blessings and hug your babies tight. That’s all I got.

 

Edited to add-Thanksgiving Day:
Before anybody says this: YES! I know she is a miracle! I know that we are so, so blessed to have her with us–even with these serious concerns. She really should have died on the day she was born. I know I should be grateful for every day we have had with her–and I am!

I’m tired, really tired, exhausted. And scared, very scared, terrified. Our family lived through the hell that followed her first medical emergency. And her condition is very likely to cause a repeat of that emergency.

I’m feeling panicky right now, even, watching her run around the living room while my dear Bull and the other Calves are watching a football game. I’m trying to cherish every one of these precious family times, knowing that we have no guarantee for more.

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2 Responses to “In Which There Is Whine, But No Cheese”

  1. Carol G Says:

    Hey Purple Moose. I hear you and really feel for you. I hope through this, you can find a secure place in God’s loving arms and hear His voice whispering that He will help you all through this.

  2. purplemoose Says:

    Thank you Carol. I’m looking.


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