How to Help an FPIES Family

An informative and empowering post from The FPIES Foundation blog: How to Help an FPIES Family Today

We are so fortunate that our friends and family have been so incredibly supportive through the many stages of this journey.  Family, long time friends, new FPIES friends and even those whom we know nothing about....  There have been times when I read an anonymous comment on this blog and wonder if that person even realizes the impact of their kind and supportive words. There have been times when we have received anonymous and not-to-anonymous donations to help us through some rough times providing for a family through a chronic and rare illness.  How do I even convey what these gestures- no matter how seemingly simple they may seem to the giver, mean to me- to us.  Nothing goes unnoticed or unappreciated when the small things are the big things- like an illness that takes away your ability to feed your child.

If you're looking for a way to help and need some idea's, please read How to Help an FPIES Family Today

And thank you for all you do for our family, for your kind words, for your prayers, for your positive thoughts and comments left on this blog and sent in e-mails, and for the monetary donations for our family or for The FPIES Foundation to help them help other families, and for the time spent helping us with our other boys, and for the RV loaned for the long travel to specialists, and for the weekend (and longer!) visits to help watch our boys, and for helping purchase the Vitamix that now makes Little Mans' food every.single.day, and for the grocery help,and for the acceptance of our restricted schedule and our special needs to keep Little Man safe, for the care packages sent to his brothers- especially when he is in the hospital and our attention is so divided and energy drained; and for watching our boys while we go to appointments for Little Man or picking them up from the bus, and just for simply understanding the adjustments we have made to help our Little Man thrive, and for multitude of other ways you have helped!

FPIES Friends!

I "met" this FPIES family online last year, when she joined the FPIES babycenter group I was already a member in.  She titled her post something like "MN families".  I remember that post as if it was yesterday and it was almost a year ago!  How exciting!  Another family close by!  Well, as long as you consider 5+hrs.close by!    We have connected on many levels and conversations online, through FPIES support groups, facebook conversations, blogs, and phone calls but we had yet to meet in person.   

Our Little Man's benefit was planned for our hometown, which was further north than they live! But we wouldn't be passing by their house on the way; but they did it one better!   They came to our benefit!  A 3hr.drive!!  They even brought Kara to meet Sam!  Kara and Sam are just a month apart, and received their diagnosis around the same time.   They both have FPIES and intolerance's to milk and soy and have limited diets.   They connected right away, as if they had known each other all along....much like we did! 

I have been so grateful for the friendship we share, the common ground shared in the crazy world of FPIES.  Friends that become like family....

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....

Never Alone....

A relationship you have with your siblings will be your longest relationship in your life. I truly believe one of the best things my parents gave me is my siblings. I hope our boys feel the same way about each other as they grow.

I have 4 brothers and 2 sisters. They mean the world to me, and I know they would move mountains for me if I needed them to. My sister's have been invaluable to me through this last year. My youngest sister A.(almost 14yrs separate us!) came to live with us this winter/spring when things were so very rough with Little Man that I was barely keeping up. The morning she arrived, she did more in 3hrs. than I had been able to do in 3 weeks- laundry, dishes, games with the big boys. Taking care of little man had become a full time job. Right before his first hospital admission, his daddy and I had both been calling in sick to work because it took both of us to care for the boys throughout the day because little man was so sick and in constant pain. A. stayed with us for 3mo. and it was a gift. My other sister K. has been available, almost at the drop of a hat....she lives closer and visits often (never often enough though!) ;)

It is our hope that our boys always have the strong bonds they are forming now and carry with them, for each other, for life. Our eldest struggled with Little Man crying episodes, when the "colic" started at 2 1/2mo. old - he wanted to help so badly; he is a responsible leader. Our second son cringes at the thought of Little Man getting his blood drawn, an IV placed, even a blood pressure check makes him hurt for him- he has a sense for other people like no other, he is a protector. Our third son is too young to fully understand what is going on, and has started feeling the pangs of jealousy as this journey goes on and on and on; but he has been so patient- so loving.

Their bonds will be stronger than they would have been had Little Man not gotten so sick.

With Little Man's illness, we have had to strengthen from deep within, a strength that could only come from Above - to perservere through the many days of crying and crying with nothing to do, nothing to stop his pain, no direction to go in, trapped. It has been a very, very difficult year and I will never forget the long days and nights. But I am not one to dwell on such things for long and choose instead to focus on our blessings.

We celebrate a year, Little Man's 1st year, a year to a diagnosis. We celebrate the gifts Little Man has given us....patience, perseverance, advocacy, empathy, love, knowledge, faith, closeness, trust, blessings, support, strength...

Faith, Family, Friends....

Never Alone....