Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, March 21, 2011

A Chronic Illness...

It is the hope that one day, Little man will be past this complex stages of his illness....maybe even past his illness completely.   His system can mature, it can repair, it can be the beauty of a childhood disease- resiliency.   But how much adverse affects will happen in the meantime?

How much to his system, to his feeding ability, to his speech, to his weight, his growth, his development.  And not even just to him, how much to his brothers, to our family?  As a quote on our United Family Fund pamphlets "When you diagnosis me, you diagnosis my family".  

And, as another mom put it so well...."it may be his illness but the whole family suffers through with him"  We suffer through with him....we don't suffer alongside of him- he has to live through not being able to do the simple act of eating, to live through simple foods causing him pain, to not be able to tell me his pain, to have the scary thing IV's, blood draws, procedures, and vomiting and shock....but we suffer through it with him...when he is begging for food during family meal time, when he hurts and can't communicate other than crying (and crying and crying), when my arms are busy holding him and can't help one of the other boys, when he can't sleep and we stay up with him, when he feels lousy so we accommodate his needs first....we all suffer through with him. 

I grew up with 6 brothers and sisters, we are all pretty healthy....certainly no chronic illnesses.   I know what it is like to grow up in a big family and share in the sacrifices...and love; but I do not know what it feels like to grow up with a brother that takes so much of my mothers time and energy and resources.   I worry everyday how the other boys are coping with it.  One of the things I have learned is, if I am coping, they can cope better.  Kids are like that- they live and learn through example through most of their formidable years.  But days of reacting and my anxiety builds and grows and even my best coping mechanisms are difficult to grasp at.  I have developed many coping strategies over the past year but some days, FPIES still gets the best of me. 

Living with a child with a chronic illness is often a constant daily struggle, the struggle to define the line between FPIES and normal.    The line where I pace myself so I can make allowances for his needs while still meeting the needs of 3 other children.  The line where I don't get upset at FPIES for what would normally be happening and affecting our lives anyway, the everyday struggles of raising 4 children on a limited budget and time.  The line where I allow myself the adaptations, the shortcuts, the changes to our family structure and life because of what FPIES is....because it is what I need to do to get my family, my Little Man, through it.  Where we appreciate and thank God for showing us how to slow down, to accept change and it's outcomes.

"Where there is Faith, there is Love.  Where there is Love, there is Peace. Where there is Peace, there is God.  Where there is God, there is no need". (author unknown) 

Because God has given us a gift in Little Man and embracing his illness and the changes it has brought us is my main coping strategy. 


  1. So well said, Joy, no one else could have put it better! Sam is lucky to have such a strong and insightful mama and we are so lucky to have you as another support and as inspiration for our own situations!

  2. I agree with Amanda. Beautiful, and all of your boys are SO lucky to have such a dedicated and loving mama like you. Hang in there mama. You are not trudging the road alone!

  3. Amen Joy! As rough as it is, don't forget how much your boys are all learning from you, Sam, your husband and each other, despite what FPIES takes away. They are learning patience, understanding, empathy, determination, FAITHFULNESS... I can only believe you will all only be stronger, each one on their own AND as a family, when you come through the other side of this! I know for certain that I learn from you every day :)

  4. Ah, thanks Jamie! Thank you for always being so supportive. I enjoy following your G's story!!