Overwhelmed but....

Overwhelmed and scared, nervous, anxious and yet calm about Little Man's upcoming procedure tomorrow.  He will have a PICC line placed for TPN (total parental nutrition) to bypass his gut, for gut rest and restore his villous atrophy and heal the inflammation.  We are hopeful this could be our Christmas gift this year....it is after all our only wish, the whole year.   We know it will not erase his FPIES, we are coping with his FPIES.   But what we would like to see is a better course of healing and action for next steps....we can't seem to get to those next steps because of the vicious cycles we keep getting trapped in.  So, gut rest may get us past these cycles and onto next steps....and/or it will offer additional clues as to why we have kept getting stuck.  

I was feeling overwhelmed this morning, as I think about the day tomorrow...and the weeks to follow.   And yet, a calm and peace came over me...a little bit later I read a poem that puts in words how that peace washes over me, and what helps me to go on...it goes deeper than my own strength, that I know. 

He Keeps Me Going

by Betty Purser Patten

It's God that keeps me going

When my world just falls apart;

It's He who lifts my spirit

When I grow faint in my heart.

His love always sustains me

In my trials and distress;

I don't think I could make it

Without God, I must confess.

It is not my cup He fills up-

It's the bucket that I bring.

It's not the song He gives me -
It's the symphony to sing.

It's no the lamp He offers -

It's a floodlight as I walk.

It is not a voice that whispers -

But a heart-to-heart heard talk.

It's not just showers of blessings

Teeming riches does He give;

It's God that keeps me going

Every moment that I live.

Without God, I would not have the strength to endure such a difficult thing for a mother -- the need to nourish and feed their child.  Without God, I wouldn't have the instincts that connect me to Little Man that go deeper than anything I've ever encountered; a burning instinct that burned in the pit of my soul more than anything I've ever experienced....without my instincts, I would get overwhelmed and not be able to escape.   Once I started believing and trusting in my instincts, I was no longer so overwhelmed.  

God doesn't fill my cup, he fills my bucket.  He fills it with the beauty of a family that is sticking together, all for Little Man- that is not giving up when it gets tough, we just get tougher.  Two parents that are bonded together in unity of fighting against FPIES, fighting for best treatments and options, and quality of life in the face of a chronic illness.  3 little boys that always think of Little Man's needs, and want to help in any way they can.  A "band of brothers" they are, the bonds they are creating while enduring this journey will bring them closer on a deeper level than anything we could have taught them.  The meaning of love and sacrifice, perseverance and instincts.  The meaning of unconditional love.  My bucket is full.  

It is not a song to sing but a symphony of Awareness.  Of using my voice (He didn't give me this "big" mouth for nothing) and passing along the information learned, of raising awareness for future children with this illness, of raising awareness for the need for support for the family's behind the children with FPIES.  Of being a part of something outside of our own personal FPIES story, to further help other protein intolerant children. 

It's not a lamp He offers but a floodlight....a floodlight in a maze...a floodlight of friends, new friends created in a FPIES support groups, old friends offering words of inspiration and comfort- stepping out of their lives from miles away to reach into ours for a moment to offer us that little glimpse of hope and strength.  A floodlight of family, sisters who give up their lives to move into yours, who are always there when needed.  Family who gives conversations of comfort, and encouragement.  Family who visits and gives the gift of love in their presence, passing their strength in a simple hug.

It is not the voice that whispers, but a heart-to-heart heard talk.  How I can go to sleep with worry on my mind and wake up with conviction of thoughts, and a rested soul.   How, a very real heart-to-heart with close friends can be the words of God spoken to me. 

It's not just showers of blessings- we have received so many blessings.   Is FPIES a blessing in disguise?  Everything is a blessing in life when we know that God is with us and that everything is happening for a reason.   

So, I am overwhelmed that my little man is having a procedure tomorrow morning....I am his mommy and that is my job- to worry about him.  But I have Faith that the roads we have traveled and the one we are on right now, is in His hands.    He keeps me going....