What a hard few months it has been. Since my last jubilant post we have taken many steps backward. In fact we have taken so many steps backward that it has been difficult to believe that we will ever get back on track with healing. I think I have been questioning God in this time, but not consciously. I am only just now – today – realizing this. I have been questioning whether or not we are truly on the path that we are supposed to be on, but I have not truly even admitted this to myself until now.
There are 2 reasons I write this blog. One is that I believe the Lord impressed it upon my heart to do so. I have no doubt that God himself occasionally uses our journey to reach into the lives of others – believers and non-believers alike to speak into their lives in some way. I happen to believe that this is very personal for God, and I believe that He uses our story – I imagine that is the only reason He would “ask” me to write our story and post it in a public way. The other reason I write this is because it is the testimony of my children’s lives. Someday I want them to be able to read this and know beyond any doubt that the God of the Universe was there with them weaving an amazing story of hope and healing. The one thing that I have forgotten along the way is that this is also MY testimony. This evening I went back into the entries to remind myself of what God has told ME.
In my “little faith” I often pray that He would help my unbelief. I know this is a place where God can meet me – and faithfully has, but I am also no longer a baby in my faith. I believe that this is a good time for me to start on some “solid food(faith)” and let him develop in me a “perfect faith” (at least in this area). I know what the Lord has told me. I know that “all good and perfect gifts come down from the Father of Heavenly lights” and I know that he does not make a promise and then just change his mind…”who does not change like shifting shadows.” My heart became heavy recently when a fellow FPIES mom and dear friend pointed out to me that God had never said he would heal her daughter. I had realized that God had never told me that about the twins either. I took this statement on personally – and though it is true – and I took it on with a positive attitude – I let it become a little bit of unbelief inside of myself.
So what has God told me? He has told me that as we take this journey and follow this healing protocol that we are on, HE will go before us – each and every step of the way and prepare their bodies.
So what does this mean? Does this mean that there is complete healing on the other side? When I think about what I know about the protocol that we are on...I have to say yes. This means that one day those two children will be healed.
So why is it so difficult to truly follow the protocol? In part, it is very individual, and there is no one set way to do it. It requires a lot of customizing and constant tweaking to get it right for each patient, and as we have seen first-hand the guidelines are meant to be very customized. At one point we were adhering to the plan as outlined in the book PERFECTLY. We were stuck. In one of our correspondence with the doctor who authored the protocol she advised us to move forward in some ways that were actually not “by the book.”
So what do we do next? I believe that we need to get back on track – back to following the protocol as it is written. What will that mean for the twins? I guess no more potty reward raisins and no more fresh mango. Those raisins are actually the most difficult one for me. These children LOVE raisins and don’t many parents give their kid an M&M or a Skittle when they are potty training? Is it really too much to ask to give my kids a RAISIN?
This is harder than it sounds. I hear myself and I think it sounds pretty silly, but then the everyday reality hits me and it is tough.
Still there is so much more I want for them. I’m not talking about candy from the checkout lane. No, I would just love to give them a piece of GAPS legal Angel Food Cake for their 3rd birthday in a couple of weeks. I would like to let them grab one of daddy’s bananas. I would love to make them a roasted chicken sandwich on sprouted sourdough bread with a bowl of grass-fed yogurt and berries for dessert.
It’s still just manna from Heaven for us. I am not complaining, but I am really hoping that we are allowed to enter into the Promised Land before long. Obedience – I am thinking that is the lesson here.
“When God heals my belly, I can have muffins.”
When God heals my belly, I’m gonna have cookies.”
“Can I try that when I’m bigger and God heals my belly?”
I think this will have to be the motivation when it is almost too hard to say, “No, you can’t have 5 raisins today.” The dream that one day they will be able to eat like this – if I am obedient – and walk in faith…one step at a time.
Today LittleR was talking to me about eating the recipe that they had helped me make. He told me that God was healing his belly and Jesus was healing his belly too. I sat down and told him that I wanted to read something to him that God said. I explained that I would read it from the Bible because that was God’s word to us. In response he explained to me that God would have to speak to us through the Bible because he was “way too far away (pointing up) working on the computer.”
I read: Isaiah 53:5 – But he was wounded for our wrong-doing, he was bruised for our sins; the punishment of our peace was upon him; and with his stripes we are healed.
LittleR: “But I’m not healed yet.”
My response: “But God is working on it.”
We say this all the time…”God is working on healing your belly.” And since mommy does all her “work” on the computer…God MUST be working on LittleM and LittleR’s bellys…on the computer.