Let me be honest for a moment. This journey has been hard. Life is hard. I have had my share of trials and tribulations in my life, as we all have. However, the journey we currently are in has been my biggest challenge thus far. I never really understood how people could be angry with God or question his means for their or their children’s lives. I have been in a rut recently. I have felt alone and burdened, I have felt angry and sad, overwhelmed and anxious. With every new diagnosis, every new symptom, every new therapy, a flood of emotions washes over me like a punch in the gut. You think you are prepared as you know what you are suspecting is confirmed, but when it is on paper, and it is officially spoken it becomes more real.

It didn’t happen until about a week and a half ago that I came to the realization at JUST how much I had been holding in and trying to manage on my own. (And let me just say, keeping it in until it explodes is certainly not healthy!) I was at MOPS on a Tuesday recently, Aveline had to come up with me to group as she was in need of a feed through her g-tube, and I didn’t feel comfortable leaving her down in childcare during that time. Let’s just say, it was all going well until I heard the gag. We all know the gag, but some of us deal with it on an almost daily basis and know it well. I grabbed the closest thing next to me, a paper plate and proceeded to catch her feed as it came up over and over. A friend was nearby with a paper cup and took over for me, another friend brought a trash can. She wasn’t sick, just didn’t tolerate a feed. We caught it, I had a shirt for her to change into, and wipes to clean her mouth. She wasn’t embarrassed by it, she wasn’t really even phased by it, and in just about any other setting I would not have been either. However I was surrounded by women I knew, some that I didn’t. Some knew what was going on, some didn’t. I was so OVERWHELMED, EMBARRASSED….

I packed up our things and headed to pick up Novella from childcare to leave, when my friend (the one with the handy paper cup) rushed after me. She encouraged me not to leave, she said everyone understands and that they want to love on us. She said, “Micah, that was so real! We want to pour into you and your sweet girl, there is nothing to be embarrassed about.”, to which I replied, “it was a little too real”. I try to keep our private struggles private. For people to know that we deal with a throw up almost every day and for it to be so public, was a lot. I don’t mind being an open book, but being that transparent and vulnerable is a hard place to be. I broke down like I hadn’t in a long time. Sobbing, crying. I got myself contained, and we went back up to finish the rest if MOPS. Aveline ended up napping the majority if the remainder of the the time.

The rest of the day there was an outpouring of love. After MOPS, moms came and encouraged me, I got text messages and Facebook messages from them checking in on me. Vulnerability is not my strong suit, neither is asking for help, or feeling like I need help, but in that moment, I realized I cannot do this alone anymore.

For awhile now I had been questioning why this would happen to our daughter, why any little innocent children have to suffer and go through the pains and trials that they do. And you know what, we may never know those answers until we get to heaven and God can reveal everything to us.

So in the meantime I have had to have an attitude and mindset change. First, I ordered emesis bags (throw up bags) to keep in the diaper bag and car, so we are always on the ready and don’t have to depend on paper plates and cups, since this is a new norm for us, we need to embrace it and be prepared for it. Second, I got down on my knees and I prayed out to God out loud one evening. I told him that I was desperate, I could not do it alone anymore and that I needed his guidance, his peace, his love to wash over me. I prayed like I never prayed before that night. Then I researched devotional books for special needs parents.

In that process I came across not only a devotional book, but she also writes a blog. She is a military spouse, and a christian with two special needs kiddos. One with a feeding tube, and other medical complexities. It was like God had meant for me to find her blog, and her book. Some days it feels like she is writing directly to me, and finding devotional books that I connect with like that are far and few between. So what a blessing!

The name of the blog is Singing Through The Rain, and the book she wrote is called, “Refresh : Spiritual Nourishment for Parents of Children with Special Needs”. It is quite the page turner, and it has helped me answer some of the questions I have been asking and dealing with.

I pray that out of his glorious riches he may strengthen you with power through his spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and how long and high and deep is the love of Christ.” (Ephesians 3:16-18)

The work is not done, nor will it be until we are in Heaven. However, for now, I am at a better place than I was, and I will continue to lean on and rely on Christ, I cannot do it without him. This journey is too much for me, but God will carry me.