October 1, 2012

when you don't get the answers + big picture

When Olivia was diagnosed with PFAPA (pronounced "fappa") I wasn't surprised. It wasn't scary. It was actually the diagnosis I prayed for. It sounds silly, but I had a peace about Periodic Fever Syndrome, I was ready for it. I had done the research and talked at length with a woman with a daughter who was diagnosed with PFAPA. But before all of that, when it was just us against the fever, with a seemingly endless cycle of motrin and tylenol, I was scared. It was that shake you to the core, anything is possible, paralyzing fear. Because we didn't know what monsters were lurking in the shadows of that fever.

That's why I'm writing this post.
For the mama out there, who doesn't know what's going on with her baby and will scream if she hears "virus" even one more time. I want you to know that you are not crazy; there is an answer to all of this. And good for you for not taking a doctor's word as gospel, and being your child's advocate.

{the sight that stopped my heart}

If you're new here you can read this, this, and this to catch up. 

To put it simply. Olivia gets fevers, regularly. For no reason. There's never any specific virus, or bug that the doctors can identify. Just the fever. PFAPA is characterized by a recurring fever of unknown origin. It took the doctors at Vanderbilt about 20 minutes to diagnose her. If you are going through something similar with your little one, and you don't feel like you are getting the answers you need- I would encourage you to seek another opinion. We were very lucky to have a doctor who doesn't have a God-complex, and knows she doesn't always have the answers. I know not everyone is as lucky. Remember, the doctors work for you. If you don't feel like you are getting the best possible care your (& your baby) deserve better. {stepping off my soapbox now}

Next, I would tell you to seek community. As with most things- walking through the unknown of childhood illnesses is easier when you are surrounded by your people. It is important for you and your child to have a support system. There were many instances where I had been sitting at Olivia's bedside for days with no break, and a friend or family member would all but push me to the bathroom so that I could take a shower, or brought dinner by. Those acts of service were exactly what we needed in that moment.

That brings me to the next point; take care of yourself. I'm sure you've been told before, "if you don't take care of yourself, you're no good to anyone else." Y'all, it's so true. You have to make time to shower, eat and rest. Let the people in your life help. Yes, I agree no one can take care of that baby better than you. But I doubt anything horrible will happen because you take a 5 minutes shower. And you'll feel like a different person after those 5 minutes.

My final piece of advice is to pray. There were many days (and still are) that I would lay in bed with Olivia, her body so hot I could barely stand to hold her- but couldn't let go. In those moments I prayed. I prayed about the temperature of her body, I prayed about the terrifying thoughts in my mind, I prayed He would give the doctors wisdom. This is your baby, the most special tangible thing in your life. You can't just leave it to the doctors- you've got to hand it over to the Great Physician too. These precious babies that He has placed in our care, are after all not our own. They are His.

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