TBT–What Happens….

Throw Back Thursday, blog style. This post was originally posted last spring. I was a bit, ahem, ticked off.

What happens when you begin to lose faith? In perspective we haven’t been on this journey long. Five years is nothing when compared to other children’s battles. Having a child undiagnosed with unexplained ailments compared being a parent whose child is fighting a life threatening illness is insignificant in comparison.

I apologize to all who read the Dr. House post and the Poor Me post. I promise I am not just regurgitating, or wallowing. I was just hit, yet again, by the bat that is a doctor who passed the buck.

I feel foolish and selfish for even getting upset. Let alone discussing losing faith. I try to keep this blog upbeat and fresh. I hate wallowing, repeating myself.  But I am struggling. I am second guessing myself. I am wondering if I am the mom who cried wolf.
Why am I upset if not one of the five doctors I have contacted do not think it is significant or alarming that Boo is having swelling in her arms, hands, feet and legs? 

So what do I do when I begin to lose faith? I get pissed. Seriously pissed. In all honesty I also had a healthy cry, a text-fest with Tia and a glass of wine. Maybe two.

But I got pissed and I decided that it’s not okay. I’m okay with Boo being undiagnosed but I am no longer okay with cardiology telling me to call rheumatology who tells me to call the cardiology who tell us to have our Pedi order a test. 

Which she does and then that test is cancelled by radiology who doesn’t think it is necessary.

Because really, why should we investigate why a child is having intermittent swelling in their extremities for no reason? 

So I got pissed. I did some more research (cause I have spare time) and found another specialist to contact. I am making cardiology see her next week and not leaving until he refers us some where. Any where.

I have reached out to two different “Dr. House” type doctors that are not local but I don’t care. I have e-mailed yet another doctor whose blog I read to ask for a recommendation. I found through my own searching of Children’s Hospital a center that deals with disorders of the vascular system. 

I am not giving up. I am not crying wolf. I am not waving the white flag.

Some day. Some how. My child will have a doctor look at her as a whole child and not say call another doctor who will then cancel a test.

Just because her various ailments are not deadly doesn’t make them any less significant. They just make it easy to put into perspective.

I know what Boo is experiencing isn’t life threatening. But it is impacting her life. And that’s enough for me to get my big girl pants on.

Some people lose faith and curl up in a ball. There is nothing wrong with regrouping. Me? I get pissed.

Thank you to everyone who reached out last week. Who gave me ideas, support and were just there being my village. I am using all of the tools you give me to stop wallowing and instead remembering the warrior mom creed:

You will not dismiss my child. She is too important.

>Okay, if it’s not our creed it should be.

1 thought on “TBT–What Happens….

  1. Autism Mom

    Perfect – something that needs to be said to every person who works with our children because it goes to recognizing and appreciating their uniqueness, not where they fit on a bell curve. Great post!



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