Last night I was talking to my Dad – sharing some updates on what has been happening with the twin’s health. For the first time, I told him the story of how lots and lots of money fell out of the sky – meeting our needs for our health insurance deductible, and completely paying for BabyM and BabyR’s immunotherapy (not covered by insurance) for the year (all before 2010 was even over!). My dad was kind of struck by what sounded to him like a really big faith. He said, “What I hear you saying is that you have the word of God as your foundation.” Leading up to his statement, I had told him that I have a “James joy” and that I have had to ask God for that wisdom that he “gives it without reproach,” I told him that again and again I have heard God telling me to “wait and know that I am God.” I meant every word of this from the bottom of my heart. I wasn’t trying to impress him. I wasn’t speaking in “Christianese” – just telling the story as I always do – as I see it.
I guess maybe it sounded like I had this huge faith. That is what struck my dad. Yet the truth is that lately I have been struck by the fact that all I have – and thankfully all I need – is just enough faith and strength to get through each moment. So often the prayer that comes from my heart is “Lord I do believe, help my unbelief.” I constantly confess my “faith of a mustard seed” and then I do the ONLY next thing that I can. I rest on the promises that I have received from HIM – the “author and finisher of my faith,” and I genuinely try to move forward doing what I believe to be in line with what He wants me to do.
“I know the plans you have for BabyM and BabyR Lord, plans to prosper them and not to harm them; plans to give them a hope and a future.”
I cling to that.
I don’t like to say that my foundation is on "the Word of God. Maybe it is because that sounds like the "Sunday School answer" or "Christianese" to me. Here is it - my foundation is ON GOD! Don’t misunderstand me, I know that means believing what I read in the Bible, but I am clinging to HIM – the REAL LIVE GOD OF THE UNIVERSE! I am clinging to what it true and solid and UNSHAKABLE. I rest knowing that every time I am surprised by another FPIES turn in the road – HE IS NOT. I marvel at the promise that He will work tirelessly so that I CAN wait on him – “for he gives to his beloved even in his sleep.”
Thank God that I don’t have to rely on my own efforts. I would go to bed every night in failure - after NOT being able to figure out how to feed my children. It really is SO hard for me to wait on Him, but that is where I lay down my own weakness and chase off the temptation to rely on my own power and abilities – “for when I am weak then I am made strong” – THROUGH HIM. I cannot do anything about this FPIES nightmare, but HE CAN!
I do not have a giant faith. This is not Chritianese or vibrato. This is JUST ENOUGH faith to get through the day.
“My help comes from the Lord, maker of heaven and earth.” Psalm 121:2
Nichole,
ReplyDeleteI apprecite your blog so much. I can relate to so many things that you share and for the past 20 months with my son, I have had to live one day of faith at a time as well. My son also has a G-tube and has had breathing problems which improved after the nissan surgery. Just last week our GI doctor told me about FPIES, I've always known something else was wrong with him, but I'd never heard of this diagnosis. Now I am trying to gather all the info I can but sometimes I feel like I am in denial on top of being totally confused. I would love to connect with you, I have to figure out how I can share my email without posting it directly on your page. Do you have a way to be contacted? are you part of any support groups on line? Thanks for your post and for being authentic.
Kristina, Hi there. I am so glad that you are finally getting a diagnosis that can help you to understand things better. Funny to say that since with FPIES there is NEVER a clear answer to anything, but I cannot imagine having a child with FPIES and not knowing that they have FPIES. I see on your blog that you have found a couple other Moms that you are following at least their blogs... These are GREAT!!!!! women - and women with a string faith I might add. We lean on each other quite a lot. Please email me directly - I would love to connect with you. nmbrunk@gmail.com
ReplyDelete