Tuesday, August 11, 2009

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!


Cindy said...

This is my first comment here. I was directed to your blog around the time of Hope's birth, but unfortunately now I can remember by whom! (It was another blog, and they were asking folks to pray for your family as you were getting Hope's testing and diagnosis, etc.)

Anyway! Hi. I don't have a child with EB, but I just wanted to thank you for writing this post. So much of what you shared resonated with me. I too am a reader, a researcher, a planner...and when things don't go according to MY plan, I experience confusion and delay.

Reading your post really had me smiling and nodding. Kind of an a-ha! moment. So, thank you.

I keep your sweet family in my prayers.

Cindy said...

OK, shoot...that previous comment was from me, but I was logged in from my wrong account. Sorry!

trennia said...

God bless your heart.

Devin said...

Ok, first off: on a purely humorous note, I seriously wondered if you had come to my house, opened my fridge, and then wrote about it on your blog. Right down to the condiments, and the yogurt on the second shelf! *heehee*

No, I am not a perfectionist...no, I am not a perfectionist...

Secondly, I want to thank you again for being so open about your struggles with fear and confusion. I struggle with that too, with our newest peanut, and sometimes I think that many Christians look down on me for that, as if I am not trusting God enough when I am open about my fear. I know the truth, I know that God is in control, but as you said, sometimes that fear just creeps in. You make me feel normal Kristy. Hang in there, there are hundreds, including myself, who are praying for you and Hope daily!

Trisha Larson said...

Beautifully written. I just love your perspective. I'm getting there -- it's a lot of work!

Hugs for all that you have endured and yet still shine brightly for Jesus! I hope to be able to do the same someday.


Heather said...

I'm praying for you right now. It's hard not to be anxious about our children, and with all you've been through, so much more would be the case for you. I pray that God brings peace where there is anxiety and that He whispers His hushing in your ear...that His voice would be your calmer. You are right...she's perfectly knit together. She is a beautiful girl!

Michelle said...

Praying for your sweet heart tonight!!! ~Michelle

Jennifer said...

*hugs* You have a lot on your plate and you have such a wonderful, strong, positive outlook. I don't know that I could carry the load that you do, and I truly admire you. I will keep you and your little ones in my prayers.

Jen said...

Oh, Kristy, I have soooo been where you are. There are so very many unknowns that are inherent in having children....they are so unpredictable in the first place, and then throw in a "Diagnosis" (I capitalize that, and put it in quotes, because of the weight that word has in my family's life), and you begin to question EVERYTHING. Is my child behaving this way or that way because it's just their personality, or is it The Diagnosis?? Am I doing the right thing for my child, or do I need to be doing more? Are they crying because there is something seriously wrong, and I need go battle/educate the ER staff so that THEY take this seriously...or is Sophie just crying because she's tired?

Oh, yes....The Diagnosis seems to color everything. For us it is not EB but another acronym, PWS, which stands for Prader-Willi Syndrome. For us the enemy is not skin fragility but another basic aspect of human life - food. I have come (after five years) to a place where I have accepted that God planned every cell of Sophie's body, and that PWS is as much a part of who she is as her hair or her beautiful eyes or her belly laugh. At the same time, The Diagnosis has thrown us into a place where we can have NO assumptions about how Sophie's future will look, and that is a difficult place to be. It is not at all what we planned for...it's been made obvious that God had other plans for us.

So anyway, just wanted to let you know that your "unsettled" feeling is normal. You've been down other difficult roads with Isaac and Asher, but this particular road with Hope is a whole new deck of cards. We had no idea Sophie had PWS before she was born...you had no idea that Hope had EB before she was born...so as parents we are thrown into the position of having to simultaneously learn everything about, AND adjust to, a condition we previously knew nothing about. It is definitely not a "comfortable" place to be.

I have checked in on your blog every day for, I think, about a year-and-a-half. Your kids are gorgeous. I am still praying for, and thinking often of, your family. I also would be VERY EXCITED to visit The Container Store...I don't even go to the website that much because I'd be tempted to spend a lot of money!

Praying for you, hang in there,
Jen in OH.

Anonymous said...

I have read your blog for months but have never commented. I can certainly understand your thoughts that you so beautifully expressed. I also often struggle with worry. Recently, I have been strengthened by thoughts from 2 Bible studies and some associated verses. From Beth Moore's study, "Esther", the comments that "trusting God is hard, but living in constant fear is harder" and "when I am in a tight grip of fear I need to remember that God's grip on me is stronger." Isaiah 49:16 "See, I have engraved you on the palms of my hands; your walls are ever before me." From the study "Me, Myself, and Lies" by Jennifer Rothschild, she points out that worry is focusing on "what if" rather than "what is."
Satan wants us to be consumed with the what ifs rather than the truth of what is- God's Word, His works, and His wonders. Finally, a verse that I recently commited to memory and find myself quoting OFTEN is Psalm 94:19 (NIV) "When anxiety was great within me, your consolation brought joy to my soul." I don't know if any of these thoughts will bring you any peace, but I wanted to share them. May God bless you with His joy, peace, and hope. Romans 15:13

Shari said...

Praying for you tonight! ((HUG))

Marie said...

It's interesting, I know another woman, Camilla, who is a perfectionist to the point she once told me "Ever seen the movie Sleeping With The Enemy? That movie is about me." Everything had to be perfect, the cups all facing the right way and there better not be a pencil on the floor... then Camilla got a daughter with cystic fibrosis. I think sometimes God tries to teach you something through a special needs child by sending them to people who try too hard to control everything. I loved the post where you said your kids play harder and be who they are because of Isaac and Asher.

Hope is not the perfect child you dreamed of...but she is a perfect child, like you said she's no mistake. And no I'm not a fan of that idea of "don't talk about it, then she will be healed." It doesn't work like that, and who knows what great things Hope might achieve as an EB child.

Mountainmom said...

Jen in OH, if you read this, one of my dearest friends has a 10-yo daughter with PWS (and juvenile diabetes---now THERE's a combination!) She is a wealth of information and support. Let me know if you would like to be put in touch with her.

Melanie said...

ok Kristy,
first: I need to see a picture of your fridge! You are *my* hero!!!

Second: I know what you mean...always thinking is it regular baby-crying or something else? Hugs to you!!!! 7I am still there...

Peace to you!!

R said...

I wish I were more organized!! I always have to sort through stacks to find what I'm looking for... sigh. I did want to say though that I understand your views on healing. I do believe that God can and does provide miraculous healing but after a loss it's so hard knowing how God will choose to work (and you're right- death is the ultimate healing... just not as we'd hope in this lifetime).
Peace & love to you!

Anonymous said...

You are a very beautiful person, and mother. Please know you are loved and I'm praying for you and your precious family.

Love ya, Denise

Rebecca said...


I'm sorry for the fear. I'm sorry for that little light blinking EB, EB, EB in the back of your mind. It sounds like, from the tone of your post, you are able to see His hand over Hope & find thankfulness amidst the Diagnosis, as another commenter put it.

I understand the reading, researching, and re-reading, especially once our daughter was diagnosed with Trisomy 18. I did also realize though that I was putting my trust and buoyed hope in the research and the statistics instead of the One who created her.

Praying for you today.

kim_brough said...

1. I would love to see a picture of your fridge. So I can get ideas for mine!!

2. I've not followed your blog for long so here's an EB question for you: if Hope's not showing symptoms, how did they even know to test her for it? I'm assuming it's a blood test?

3. Here's praying your heart rests easier today.

Stephanie said...

Praying for you. While I've never had your experience, I also struggle with all that you talked about. Thanks for being so open and honest!

Amber Schmidt said...

I think it takes a person who has "been there" with a medically challenged child to understand. To many on the outside it looks simple... if you just believe "enough" then your child is healed but so many don't understand that the miracle is not always IN the healing. So many times the miracle is in the JOURNEY and too often we miss that while setting our sights too narrowly on looking for the miracle elsewhere.

Keep setting your sights on HIM and you will never go wrong. I think of you and pray for your family often. Hugs from KY...

Anonymous said...

This little boy had EB as well.