Friday, May 20, 2011

PANDAS, Vulnerability, and God's greater plan

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.  The scientific jargon is a little confusing, so I'll explain it in real person terms.  It's a disorder that mimics Tourettes and Autism.  Some say it's on the Autism Spectrum, some say it's not.  In Bryson, it mimics autism and Tourettes when he is having a food reaction, is overstimulated, over tired, or gets an illness.  Other than that, lately he's been pretty neurotypical.  A little bouncing off the walls and into furniture, but I can't complain.

Have you ever made yourself vulnerable?  A little too vulnerable?  I'm talking holy-cow-I-feel-so-uncomfortable-but-I-can't-help-it vulnerable.  Put yourself out there a little too much?  Yep.  I did that.

I was having a bad, well horrible, few months.  Guilt, blame, anger, sadness, guilt, blame, anger, a broken record.  At our MOPS meeting, the speaker was talking about guilt.  The first time he said 'guilt' I left the room in tears.  I honestly don't know what he said during the rest of the speech.  I do know he passed out these sheets that asked us list what was expected of us as mothers and my thought was "to protect your child."  And I felt I didn't do that.  That I'd put my innocent baby in harms way.  That his health is all messed up because I didn't do enough research before making decisions.  By the end of the MOPS meeting, I was a blubbering mess and I blubbered that mess onto our mentor mom.  I'm sure she felt completely caught off guard.  What was this crazy talk?  I did it again at small group....twice.  So, now I feel exposed....vulnerable.  As a shy person, I prefer to keep unfavorable feelings tucked away like a napkin in my pocket.  But my feelings erupted and I let people see my mess of a tissue.

If I could do this year all over again, I'd give myself permission to cry, to vent, to lash out, to complain about the unfairness of it all.  I would tell myself to do this in the presence of God.  Because when all these feelings are stuffed inside, there is little room for joy, for love, for peace.  It's impossible to be an effective anything when joy, love, and peace are lacking.  God is the great healer and I need(ed) to let Him in to heal.

I'm feeling some of that peace and it's a good place to be.  I know it's just a taste of what God can do with this broken heart.  He has blessed us even through this trial.  Awesome.

My little brother (okay, so I need to stop calling him that because he towers over me) said something to me that has had a profound effect.  I was telling him how B's story has been able to help others and that I'm grateful for that, but why does B have to suffer for it?  My brother said maybe the goodness is not lost on B.  God is teaching B incredible self control, preparing him to be the man God intends him to be.  Preparing him to fulfill God's will.   Amen!


  1. Tiffiany, thank you for sharing your ture feelings. And amen and amen to your brother!! That is exactly what I feel for Ryan. God has a plan for him and B. Totally different "problems" going on their little lives, but He is preparing them. It is only natural for us as moms to feel the way we do. YOU are such an amazing mom to B. I am so happy I found your blog and am learning about B. ((HUGS))

  2. I agree with your brother. I hate that my boys have to have all this pain, torture, three doctor visits in 24 hours, needles, tests, daily pain, and so on. I hate it. But I know, through it all, God is working on my sons. I see it. I didn't used to, but that's because I didn't look. I had my head down trying to make it day by day and was too busy to see the beauty in front of me.

    Watch the beauty unfold in Bryson, it's going to be quite a show. Love you and big (((HUGS)))

  3. Hugs to you, dear friend. I'm glad that you have been able to find peace and hope. I just read a blog post about how God uses our grieving and mourning to bring about healing. I think that's true--He is able to work the most in us when we come to Him in complete surrender, realizing that only He can bring us back to wholeness.

  4. Tiffiny - Im don't understand either why B has to suffer to teach others. With that I say a great big thank you to that little boy. I believe that we are all put in our situations for a reason, in this life for a reason. I believe with all my heart that you where put in my life to help me help Liam. Had you not encouraged me to persue this avenue I may not have done it. When everyone else was telling me I was "crazy" for looking into biomedical treatment, you were telling me to follow my gut. It was because of B that you were able to do this for me. Thank you Tiffiny, Thank you Bryson. How I wish he didn't have to suffer though.

  5. Thank you, girls. I love you guys! :)

    Traci- I'm just happy you listened to your instinct. Liam is blessed to have you for a mommy.

    OFIH- That is so encouraging..thank you.

    S- How right you are!

    Tasha- and you are an amazing mom to Ryan!

    ((Hugs)) for all of you :)

  6. I have the same thoughts creep into my head. How could I have "turned my head" and allowed such atrocities to occur to my children? I literally had to "shut down" my maternal instinct to follow-thru on vaccines. I have now learned that maternal instincts are God-given and I appreciate and respect them more than ever. BTW, I have to give you credit for even attending MOPS. I attended until my boys got sick. I have always wanted to go back, but they were too out of control and immune-comprimised for me to attend. Not to mention, recovering two children from autism and pandas takes every ounce of your time, no time for meetings. But ultimately (and here is my point), I wouldn't have the strength to sit there amongst these moms who would not be able to relate to me in the least bit. Not to mention, many of them are new moms with new could I not get on my soapbox about vaccines??!! You have amazing strength for being able to go there again...seriously!