Sunday, November 7, 2010

Put In My Place...There is Hope

I have been put in my place. The message was clear for quite some time leading up to the “big push," but I managed to get pretty far off track.

What was the message? “Be still.”

I had received this directive on many occasions. I actually found peace and comfort in this instruction. For the first time in the twin's lives I was given permission to stop researching, advocating, fighting, and so on. In moments when I waivered and wondered if I was truly supposed to be waiting, I would meditate on Psalm 127:2; “…he grants sleep to those he loves.” I would lay in bed and thank God that He would be “working on this” while I rested. I found myself in the center of the peace that surpasses understanding.

Then one day I discovered an online support group for FPIES families. It was amazing. For the first time EVER I realized that we were not alone in this super rare condition. There were others. The support was amazing, and there was a wealth of knowledge and research avenues to tap into. Suddenly I felt this urgency to work harder, learn more, advocate more, search more, and to find answers. Some of the amazing moms from the group talked a lot about CHOP. One truly amazing mother suggested that since I lived close I should take the kids there. I was on a mission.

I labored hard to get appointments set for the twins with the GI department at CHOP. Since there was a 9 week waiting period I asked for prayer. I requested prayer for a quicker appointment, and many people prayed…to no avail. One of the moms suggested going to allergy first since it was only a 3 week waiting period. With every SINGLE step I was met with resistance. I was forced to beat down doors and jump over hurdles in order to get to both appointments at CHOP. The result? Nothing – well a horrible experience with both departments. Not even worth going into…except to say that I began wondering if I was pushing through doors that God was closing.

A couple of weeks ago God brought me another “message” – "Be still (wait) and know that I am God.”

Since then I have been doing just that. Shawn and I prayed about whether to cancel the next appointment (with the Lyme specialist) and ultimately we sought council from a trusted pastor and decided to WAIT. I decided that I would have to step back from the online support group since it had distracted me so much (I was consumed with it). Instead I have been praying and doing my best to have faith in the promises that I KNOW God has made.

During this time of waiting I have received confirmation on more than one occasion that this is the right thing.

Today Shawn and I were chatting before heading into the grocery store. I told him that I am just trusting that we are supposed to be waiting – that I am trusting in what God has promised – that there will be a light at the end of this tunnel. Shawn agreed – especially when I said; “It’s not easy.” Honestly some days it is not difficult to rest in His promise and there are others when I wonder if I imagined it all.

We worked our way through the store. Shawn and BabyM walked around the store while BabyR (who only wanted mommy) and I headed off to the produce department to get bananas for daddy’s lunch. BabyR asked for the one food he is allowed to have. I had no intention of buying carrots today, but when your child who has only ONE food asks for that food in the middle of a sotre FULL OF FOOD your heart breaks to say anything except YES. At the checkout BabyM and BabyR were munching on their baby carrots. Since they have not been allowed to eat they don’t really know how to chew and swallow. They are in feeding therapy, but at this point they mostly shred the carrot, chew on it for a while and then spit it out. Of course they did this very thing in the store – what a mess – and right in the checkout line. The checkout woman offered a paper towel and made some friendly comments about the mess. For the sake of the kid’s emotional health I had decided not to announce their condition whenever it comes up. Instead I let it be what it is – others just have to deal.

As the friendly woman bagged the bananas she asked, “Why didn’t they have banana since it’s easier to eat?”

We had been chatting about them while she worked on our order, and she seemed really nice. For some reason I went against my recent decision not to talk about the kids condition with people who are unfamiliar with it. I nonchalantly answered, “They have a condition that prevents them from eating foods – carrots are their only safe food and otherwise they take a medical formula.”

“Oh I know exactly what you’re talking about – my sister went through the same thing with my nephew.”

“Yeah right,” I thought. I have experienced people whose child has multiple allergies that think they can relate to the twins condition. I smiled and said, “Oh wow. Yeah it’s hard.”

She asked a couple of other questions and then went on to describe her nephew’s situation. Some of the details were different, but it was much the same. Clearly her nephew COULD relate.

“My sister is very familiar with the medical formula,” she said. “He was on nothing but that until
a few months ago.”

“Really – what condition does he have?”

She didn’t know the answer exactly, but perked up when I asked about Food Protein Induced Enterocolitis Syndrome. She thought that sounded familiar. I told her that we were just trusting God with it all and just waiting.

I could see some of her defenses come down as she answered; “We went through that with my sister. We prayed over my nephew many times. Now he is drinking regular milk and eating whole wheat cereal. So there is hope."

“That is amazing,” I answered. I could feel tears welling up in my eyes, but I held them back.

We chatted for a few more miunutes about the twins and her sister. After a few minutes she reached over to the register tape and pulled off a peice of scrap paper. Retrieving her pen she smiled and said, “I have a special sensitivity for children with special sensitivities; can I take their names and add them to my prayer list?”

I gave her their first names and told her that I was going to cry. She had no idea that God was using her to confirm his promise in my heart.

“There is hope.” I know with all of my heart that He is working this all out. “There is hope…we will soon see the light at the end of this tunnel.”


  1. To all my FPIES mommies - you have all been amazing - I don't regret meeting you all and won't desert you. I'll be around!

    I am praying for many of you by name and all of you by condition.

  2. God is guiding and with you every step of the way...what a great way of Him showing to you, and you knowing the right time to "let your guard down" (so to speak) and speak a little about their syndrome.
    I too, struggle with the "be still" or letting His work work through me. The quote that goes through me is "be the light so that others will see His work shining through you". Our struggles are similiar and yet we have been given different "roles"...
    Everything happens for a reason...we are exactly where God wants us to be. I don't know any other way to get through this kind of diagnosis and do not know what I would do without my faith.
    You are an amazing mommy who has done so much to keep them so healthy. I am saddened to hear of your experiences at CHOP...I guess God didn't want you there (likely to affirm to you that you are already doing a great job!).
    I will continue to watch for updates about how the twins are doing!

  3. oh Nichole! You are such an amazing woman. I am so grateful for your finding of the online groups, for YOU were the turning point for my home! There is always hope. Thank you for the reminder. And this disease is truly a waiting game. Do you have an idea of what you are 'waiting' for? Or are you just supposed to be still and have some rest in the Lord? Your words continue to speak so clearly to me. I have prayed for words to encourage you in hopes of repaying a little of what you give. And what comes to mind is the Sermon on the Mount. Blessed are you Nichole! He has not forgotten you or your children. You are truly blessed!(Matthew 5) (PS Dont think I didnt notice your blog title change. Very profound)

  4. Kiki,
    God has already worked this out for BabyM and BabyR and for your family. Sometimes it's hard to keep our focus on that - especially when it comes to our most precious charges... He is sovereign. None of this is the horrible surprise to Him that it was to all of us. There will be a light. I'm trusting in Him for our family and admiring your most incredible acts of surrender.
    All my love.

  5. Thank you all.

    JJ, your acts of surrender inspire me to lay it down every day. He is using you in powerful ways.

    Nichole - I love how God uses us. It is really great to have been used to help in your journey. I really sensed that the title needed to change. Although it is not what I meant I think it implied that I wanted the glory. It is His. : )

    Thanks Joy. Yup I believe that CHOP us not where HE wants us, and that is ok. He's got it all under control!