Confusion and Delay

1 Corinthians 14:33 "For GOD is not the author of confusion, but of peace"


If you are a mom to young boys you are likely familiar with Thomas the Tank Engine (FYI he is NOT a train, per Luke, he is a tank engine and if you refer to him as a train in Luke's presence you WILL be corrected) Luke began loving Thomas at about two years old. I cannot say that it has ever held my attention, but one character Sir Topham Hatt can be heard in each episode loudly admonishing "This has caused confusion and delay" when something goes wrong. That quote always sticks with me when I hear it. Confusion and delay. The mere words grate on my nerves.

I am, by nature, a creature of order. I like structure and organization. Blame it on birth order, type A personality, or OCD. I am a fan of labels, shelving, and hand sanitizer. More exciting to me than a new designer handbag would be a trip to "The Container Store". Last summer I purchased a set of containers from Tupperware for organizing the produce in my refrigerator and I will admit that when I open that refrigerator door and see my perfectly organized refrigerator, I feel a sense of relief. Even when the rest of the world seems out of control I can open my fridge and if only there, I can find order. It makes sense. Produce is in it's appropriate container and stacked neatly in bright orange containers on one shelf. Condiments are organized and placed in the door, meats and cheeses stacked neatly in the drawer. Yogurts are lined up just so on the second shelf and beverages are lined up according to size and use on the top shelf. Call me a lunatic, but if my refrigerator is in disarray, it causes me confusion and delay and it makes me unsettled.

As I look back on the past few months, I have found that that unsettled feeling has settled in to my heart. It is more than a disastrous refrigerator causing this uneasiness, it is an extremely rare skin disorder called Epidermolysis Bullosa. If you know me you also know I am a researcher. A car seat purchase proves agonizing for Howard as I MUST research prices, reviews and specifications of each and every seat in the Milky Way Galaxy. Hope's diagnosis has been much the same. I am CONSTANTLY researching and trying to better understand how to care for my girl.

It drives Howard insane. I have devoured EVERY piece of info out there on EB and I will admit I maybe know too much. This knowledge along with the diagnosis of EB have cause significant confusion and delay in my life in the past two months. As I sit here typing a perfect, healthy amazing little baby girl sleeps on her loving daddy's chest. This is a privilege I do not take lightly. We have honestly enjoyed each moment with Hope, but I will just say it, she is high maintenance. We have never been the parents of an easy going baby. Maybe it is partly our fault, after all we have endured we do not put our babies down. We snuggle, hold, kiss, and rock them to their heart's content, only putting them down for diaper changes and when they insist upon having a little space (and they do, occasionally).

Hope is a screamer. She will be happy and smiling and as quick as you can blink she is red faced and exercising those lungs to their fullest capacity. There is pretty much no in between. It causes anxiety for me, for Howard, for the boys, but mostly for me. Crying has never rattled me...like I said, our boys cried and I was able to attend to all of their needs and know that they were fine, just crying as babies do and I could just rock them or even lie them in their crib to work it out.

With Hope it is different. Her EB has caused confusion for me. I never know what is a "normal" baby response, and what could be a symptom of her EB rearing it's head. Now in being honest, I will tell you that I look at Hope and I praise and thank the Lord above each day that though she has been diagnosed with EB she is NOT showing signs of it. She has no bandages, she has no wounds, she nurses, she wears normal diapers and normal clothes. The only adaptation we make is that we keep little socks on her to protect the healed skin on her tiny heels. The skin is still fragile and we want to keep it safe. I kow how blessed we are. I do, and I do not take it for granted.

I think maybe partly because of all we have been through, each whimper and cry causes confusion, and I'll be honest, panic in my heart. Questions ravage my sanity. Is she blistering in her mouth from my nursing her? Is her cry a little hoarse because there are blisters constricting her esophagus? Is her airway clear? Is her diaper causing a blister? I am thankful that the angel by the name of Geri who also is a nurse who specializes in care of patients with EB is so patient and reassuring with me. I have her number in my cell phone and call with each panic attack, after which she assures me that Hope is fine and doing GREAT.

I know this. She is growing, she is GORGEOUS, she is thriving and yet in the back of my mind a little light flashes EB, EB, EB, EB. It is just enough to cause doubt, just enough to cause confusion, delay, panic, anxiety and I have to believe it is not coming from the Lord. In fact I know it isn't. There is one who creates confusion to steal our joy and man he is battling me EVERY day. He is relentless and never gives up. He is sneaky and will find an opening wherever he can.

The Lord "knitted" Hope together in my womb. There is no way that he "knitted" any part of her accidentally. He knitted Hope together allowing for a mutation in her Collagen. She has been diagnosed with EB and yet He is showing us that ONLY He knows how to care for her. Only HE can determine how it will manifest itself. I sometimes look at my life and honestly think, okay God, can I just get a break, can you just make ONE freaking thing go smoothly without incident, and then I look at the sweet faces of other babies facing EB with courage like I have never seen. I look at them and see beauty, and yet I wonder and even feel guilty that I allow this confusion into my heart and Hope is THRIVING.

A family member recently hushed me when explaining her diagnosis to someone. Proclaiming that Hope does NOT have EB and if we claim her healing then she is healed and that is the end of the story.

Yeah, I don't buy it. I believed for healing for Isaac and Asher and they are healed, not as I had hoped, but healed nonetheless. Hope will be healed. Whether here or in Heaven is not up to me. Her life is in His hands alone. More amazing than denying that she has EB to me is the fact that she in fact HAS it and is doing so great. Has he healed her? Maybe. I know he is capable, yet I cannot pretend to know how He will choose to work in her life. What I do know is that I am a mom, a human who needs help. I need your help. Please help me to lose the confusion and delay. Please pray for clarity and peace. I wake up each morning and my heart melts all over again that I get to be the mom to the three amazing children in my home. My heart also still longs for the two who's faces do not greet me, yet I know without a doubt that the Lord has used and is using their lives even still and I stand in awe that He trusted me with such miracles. FIVE sweet miracles. Lord please help me to keep that in perspective!