Tuesday, October 14, 2014

Be the Voice: Global FPIES Day and No Clear Words.

This month the International FPIES Association and The FPIES Foundation have been counting down to today, October 14th, the first Global FPIES Awareness Day.  Those of us who live with FPIES have been encouraged to "be the voice" of FPIES.

The problem is, I don't feel like I can talk about it coherently enough to be a voice for anything.  I'm tired.  So tired.  When Pip was diagnosed with FPIES at the end of July, I remember thinking "okay, it isn't good, but we'll find an elemental formula that works for him, and we'll be alright."  After all, FPIES is a rare condition as it is, and those who end up needing feeding tubes or other more serious medical intervention are even rarer.

We're there.  On Thursday morning we'll wake up early, check into the hospital, and Pip will have surgery to have a G tube placed.  At this point, we have to walk by faith.  The doctors and other feeding tube parents assure us that once we're past the recovery and the learning curve, the G tube will be much easier than the NG tube has been.  But it's so hard to get past the fact that there will be a hole in my baby's tummy.  He's having surgery.  Not to fix something, but because what he has can't be fixed, and this will allow him to get the nutrition he needs to grow until he can nourish himself.  Until he has safe foods.  Until his feeding aversions have died down enough that he'll allow himself to try foods once it's okay to do so.

I'm worn.  I heard "Worn" by Tenth Avenue North for the first time a couple of months ago.  I heard it again last week and I cried.

Pip smiles a lot.  He charms everyone he comes into contact with.  

But he's also frequently in pain.  He cries.  He doesn't nap.  I don't know what to do to help him.  I've encountered an attitude of "it's just food allergies" from a couple of people at this point.  Pip's "just food allergies" have necessitated surgery and a feeding tube.  He doesn't just have a few food allergies, he has no safe foods.  He's allergic to food.  Food can send him into shock, it causes him to bleed intestinally.  When you have a child with special medical needs, you rapidly gain a new vocabulary.  One of our first new terms was "vomit to shock."  I pray none of you have to experience that with your children.  

We're asked what we need.  How people can help.  The truth is, we feel like we're wading through a fog.  One foot in front of the other.  Walking by faith, not by sight.  We don't have the energy to think about what to say we need.  We need help, and support.  But we don't know how to respond.  Just show up.  Really.  I might cry at you.  Because I'm not brave enough or strong enough for this.  I know that we're still standing and experiencing joy because of Christ and his body.

We've also been asked how to pray.  That's something I've been thinking about.  We've prayed a lot of prayers that are more groanings and mutterings than anything lately.  However, when I think about it, I have come up with a few specific ways you could pray:

Please pray for wisdom for Pip's doctors and medical team.  FPIES is still relatively uncharted territory medically, and there's no standard of care as of yet.  Pray that God would direct them in their care for Pip.

Pray for peace for Ryan and I.  We're having to walk in faith, and I don't know that there's a harder place to do that than with your child.

Pray that we'll be able to invest in Mercy, Gilead and Abel.  This is stressful for all of us, and they're feeling it.  They need us, too, and I find myself feeling like I don't have the capacity to be there for all of them.  I know that I don't.  It's only by God's grace that I can care for them all.

It is also our prayer that others would see Christ in us throughout this process.  Even though we're exhausted and feel at the end of ourselves.  I pray that it is at that end of ourselves that others will see that it is Christ who is sustaining us.