Last week I had the chance to talk to a friend who I do not get to speak with often enough. As we caught up briefly on the phone she made a comment that I hear often. It goes something like "I don't know how you do it....that is why I was not given a chronically ill child". And I gave her the response that tells the truth: "I don't."
This comment from supportive friends catches me every time. I usually run past it, but this time it stuck. I spent the next week reflecting, and realizing one thing that God always promises: in the toughest times we stretch the most, see Him the most, and He grows us the most. God has used FPIES to change ME.
Today I reflect. And the pain is still very real.
Think...think...think...think. I have to think. I'm not sure what to do. I'm not sure what I am missing. Who am I kidding? The doctors don't know. The specialists don't know. She has stopped growing and is beginning to look pastey. She has never had trouble with that before. My head hurts from trying to think this through. I know what they are thinking, and why they expressed concern. They think she is entering her failure to thrive. I know it. I know that I see a sick little girl. This formula is supposed to be helping her but it is killing her. I know it. I can feel it. I hurt for her. I have to cry.
Think...think...think...think...Allergist: We have to get her off the formula. But just almond milk? Seriously? How am I to respond to a treatment plan that is prefaced with 'she has about a month before we need to be worried about the malnourishment'. That is just not ok! But the GI says there is no medical proof that she can react to the corn in the formula...but this time he is more silent. This time he is less sure and this time he has a different look in his eyes. He always had more to say than this time. Think...think...think...think...And the nutritionist. Give her a multi vitamin made from corn and just start feeding her? What kind of sudden plan is that? Our best hope is lamb? This makes no sense. She is so sick. She is crying again.
I pick her up. She is weak, losing weight. Dark circles under her eyes and she is vomiting again. She is starving. I am holding my baby -as-she-is-starving. This is the United States! This is not some third or fourth world country where I have no food to give her! What is the matter with these people? What sick baby can live on homemade almond milk alone!
I put her back to bed. What time is it? I have to do something. I can not just sit here and cry. Why can't someone just tell me? Help.....we need help!
On my knees beside my bed. Sobbing. I can't stop. Dear Jesus I need to feed my baby. Dear God help me. Help us. Please please help HER. What do I do? The pain.....to not feed her.....Jesus PLEASE..please, please.
All I could do was repeat it over and over again. Please, please, please, please.
What? I listen again. 'I have already given you hope.' Is that the answer?
I dry my face and head to the computer, and type out an obnoxious and desperate email full of medical jargon and doubt, begging a doctor half way around the globe for help - mother to mother - challenging her experience and expertise, and regurgitating medical studies about the inability to digest or tolerate proteins. Relying on this last glimmer of hope I was able to go to sleep.
In my morning I drug myself to the computer, and what did I see? An email! Already? Remarkable! How could that possibly be? This woman could not possibly have the time.
With her help I have fumbled my way into getting Elianna on to actual FOOD, and the introduction stage of Gut and Psychology Syndrome (GAPS). Her biggest hurdle with me has been to un-do many of the things I have 'learned' about protein intolerance, food allergy, and food sensitivity. And I could never have been more grateful. What she provided was hope. Right in the body of her email. Don't worry. You can heal her. She will be fine. Who has ever even dared to say those words to me before now?
I started this post by mentioning how FPIES has changed ME. More than nutrition, and medical jargon, and becomming a real foodie, I have learned a most important lesson. I was humbled and brought to my knees, praying for guidance on what to feed my daughter. And this is where I hope to stay. How do I know when to move forward? Introduce a new food? Push through? Wait? Give it time? Change course? I DON'T. It is that simple. He has provided a plan full of knowledge and backed by medical evidence without me even asking that offers guidance, and rest to my exhausted brain. I don't always understand completely before I leap, but I do make sure I have spent time on my knees.
And what I most certainly know is that He designed Ellie. No knowledge will ever reveal the wonders of His world and what He has planned in its entirety. Only He knows every hair on our heads and exactly how He designed each and every one of us. And if FPIES teaches me nothing else, I hope I never forget the lesson of not knowing it all, not expecting to know it all, and getting on my knees. A hard HARD lesson for this mama.