The unknowing place

Unknowing. “A lack of awareness or knowledge.”

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That is the place we are in right now. AKA the waiting place. I’ve been here before. But it doesn’t get any easier. Much of the last week I have been wrestling and fighting my mind. The fear tries to be louder than my faith, than the truth. The lies whisper to my fragile, war torn soul and it whispers the fears that have never left me, but were pushed back.. Muted. I was able to live with them, and push them back.. but they never left me.

 

I recently told a friend that I have accepted fear/anxiety as the thorn in my side. The reminder that I am not all-able and in control. The thing that reminds me that I DO need God – that when those lies crop up, I have to intentionally call it the lie that it is, and pray. Most of the time, it’s not an all consuming task. For a few days this week, I have had little energy for anything else. And then the results of her ultrasound came back. Fear had told me that there was going to be something wrong with her bile duct. Maybe something with her kidneys.. because I had BELIEVED that she was fine.. that I went off high alert and trusted and stopped worrying about those things. The lie SHOUTED that my trust was misplaced. When I heard the doctor say the scans were clear while seated amongst a sea of other parents watching their children do gymnastics – My soul audibly sighed such amazing relief. They were lies. Lies, that I did bring to God and that kept me praying for the better part of the school day for 2 days.. but they were lies. Something shifted then. The pit in my stomach lifted. When I get stressed, my appetite runs for the hills. My fragile, about to burst into tears if someone looked at me with too much compassion, state thickened. It was as if God audibly hugged me.

 

See? I’m here. You got the results quickly. This is not what’s wrong with her.

 

You worried needlessly.

 

We still don’t know what is wrong in her little body, but today I feel stronger. It’s not her bile duct, her CDH repair site, and it’s not Wilm’s tumor. The things I know to fear are off the table.

 

I am so thankful for the multitude of prayers covering us. The reminders that God is in the with us. He will see us to the other side of this, and maybe that’s another miracle where he heals her. Maybe he will use the doctors and we will be able to glorify God in the midst of a storm (If I have a choice here though God, I’d like to order a small gale…). No hurricanes please.

 

I will cling that he has a purpose and plan for Finley’s life.

 

His timing is ALWAYS perfect.

 

He has had his hand on Finley since before the beginning of time and loves her more, which is something that I have a hard time comprehending. My selfish mama heart just knows that I LOVE her absolutely and completely and I want all the days with her. I go to the worst place because I have stood at the cliff of the Shadow of Death. It is a scary place. But I am not alone in this unknowing place…just waiting. Knowing that God does some amazing things in the waiting, though I like to fight him. Apparently, I need lots of reminders that I am not in control. He still has much refining to do in me.

So in the waiting, we pray for complete healing of any infection or inflammation. Praying for her stomach and intestines to be healthy. Waiting and praying for the GI doctor to call and schedule our appointment for sooner and that he won’t find anything serious going on inside of her.

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It’s only a tummy ache….

The first time she complained of the stomach pain and had the low-grade fever back in the beginning of October, my mind immediately went to crazy town and thought that is was a bowel obstruction, reherniation, something to do with CDH.. It’s what I do.

But then I looked at the facts and told myself it’s just her body fighting a virus.

Then over the course of the next few weeks, almost once a week I would get a call from the school nurse that Finley was in there complaining of a tummy ache, accompanied by a low elevated temp between 99.0-100.4, occasionally she would mention that her throat hurt, or yesterday, a headache. There was nothing to worry about when she was at home, eating pretty normally (for her), and energy always seemed like her usual self. But when I got the call yesterday from the nurse, I knew it was time to see the doctor. 1 month of this was weird. I just wanted a strep test because I thought maybe she had some strange presentation of strep.

When he suggested a blood work up, urine, and x-rays – I was rattled for a minute, but thankful that he is thorough and doesn’t take risks with my girl due to her history. I asked for strep too, much to Finley’s angst.

I wasn’t scared last night. It was going to be nothing. Rowan and I prayed. Finley and I prayed. I did ask for it to be clear if there was something going on that it would be seen, and then I asked for his hand upon her, continuing to protect and heal her as he has in the past.

I wasn’t really nervous this morning either. I went to Finley’s Chapel and listened to her amazing teacher retell the story of Shadrach, Meshach, and Abednego and about trusting God. It really spoke to my heart. I felt God telling me to trust him in the fire. Reminding me that he was IN the fire with them. He could have kept them from being thrown into the fire, but he didn’t. The story would have a different ending.

Finley’s sed rate is high (38), the doctor told me. He is calling the ped gastro specialists at Randall to talk about next steps. We are still waiting on some of the blood work. My heart started racing. “There is definitely something going on” were his words.

As I am typing this all I can think is that I don’t want to be in the fire again. Who wants to be thrown into a fire? Really? But I am going to hold tight to his promises. He is still good. He loves Finley even more than I do. He is faithful. I can trust him. I cast my worries and fear upon him again.

I will rejoice and have JOY that I live in a place with amazing doctors. That my doctor listened and took this seriously, so even if this is some small GI issue, that it has been caught quickly. We have lots of doctors eyes on this now. I am thankful for a community of people that surround me and pray for Finley and our family. When I am weak – I can put my trust in him. I can ask for prayers off the ledge, and into the arms of a Father who loves me and will be there right with me, every step of the way. I can trust him with my precious girl. I can trust him in the unknowing place.

As another friend put it this morning, this isn’t our first rodeo.. so I remind myself not to worry about tomorrow – but keep trusting that he has us, he has her. He is going before us and along side of us. We appreciate the prayers so much – thank you for standing in the gap.

 

 

CDH Awareness Day

“Isn’t it ironic, don’t you think?” 

“Like finding out your baby has CDH, on the actual national awareness day?”

“like rain on your wedding day…”

Ok – I can’t carry a tune and I may be tone deaf.. But I always think of that Alanis Morissette song when I think of how we were diagnosed on CDH Awareness Day on March 31, 2010.

It is not lost on me, any day how completely blessed, lucky, fortunate, (enter a bunch of adjectives) that she is with us six years later. How, in a few minutes she is going to come waddling down the stairs with her crazy bed head and come snuggle with me on the couch. My heart feels like it may burst every time I squeeze her because I know how close we came.

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In honor of this day, I thought I’d share a blog post I wrote for the amazing ladies at For the Joy of It last week. For the Joy of It is a community of women actively chasing after the heart of Christ together. They have a heart for other women and a desire to encourage one another and build each other up. (This is my favorite part) Our community points others to Christ – not by what we say… but by how we live. 

Blog Post here: Sistering…It’s something we can all do 

The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body” (1 Cor 12:12). 
This truth is a foundation for what The Joy of It does as a non-profit here in the Northwest. One of the things we get to do is come alongside and support the existing activity of Christ that’s happening in our communities.
The Joy of It gets to do this thing called “sistering” where we support living out what it is to be the body of Christ with many different functions.
What is “sistering?” As defined by architects and the construction industry, it happens in the building process. A structure is built with a series of beams called joists. A joist is basically a strong, heavy board that supports a floor or ceiling. Sometimes a load is too heavy for the joist and it begins to sag, crack or weaken under the pressure. “Sistering” is where extra boards are added to the right and/or left of the joist to strengthen it. (Continue reading here)…..

Join me in raising CDH Awareness today. Wear turquoise, or a Ladybug Run shirt, post about it on Facebook, register for the Ladybug Run and post why you are running this race with us, tweet about CDH and use the hashtag #cdhawareness or #cdhawarenessday, or do a random act of kindness and spread love, joy and HOPE today.

I’m also going to remember all the precious CDH babies that didn’t make it, and celebrate the ones that did.

It’s that time again….

Finley has an ultrasound scheduled for Friday to take that annual look at her bile duct. As always, I would appreciate prayers for everything to be “of no concern” and for her to have a technician that is able to do the procedure without causing her pain.

For those just coming up to speed on our miracle who are wondering why are we looking at her bile duct? Did she have a CDH? Finley had another abnormality occur shortly after she came home from her first NICU stay. Initially, they thought she had a cholodochal cyst and promptly scheduled surgery.  But, God had other plans. The issue resolved itself and she didn’t need surgery, but it resulted in her bile duct being slightly outside of normal range.. this is something that warrants monitoring because if there is inflammation in the area causing this aberration of size (which we can’t see with MRI or ultrasound) this is a spot that could develop cancer. The laundry list of things that “could” happen to Finley is so long, I have come to a place of great peace that I am not worried about it happening. God is with us every step through prayer and that gives me peace. So thank you for praying for our sweet girl and continuing to do so.

Dear Finley,

 

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I look at you each day and just pinch myself. You are such a gift. You have such a special soul and really touch those you come into contact with. I can’t imagine a world without you in it. I am a different person because of you. Walking in faith, trusting God didn’t come easy to me. God showed up big time and I hope you someday realize the magnitude of prayers offered for you, and how many truly were answered. I could have easily just spent my life grateful and happy – but God whispered something more into my heart. He made me see that we were blessed to BE a blessing to others. It started as a desire to show hope and love, to be there for others as people were to us, and also raise money to help other families through research, and financial support. A few years down the road, another reason came into light. You see, my sweet darling, someday you will be faced with a choice. You carry within you a 50% chance that your babies will have CDH. That knowledge hurt my heart. You will have to decide either to genetically alter your baby’s DNA to ensure against CDH, or roll the dice. I can’t do much for the choices you will have to face down the road, I will love you no matter what you chose. There is one thing, that I can do and that is to work hard with others to raise money for research so that IF you do have a baby diagnosed with CDH, that we’ve done what we can to improve the odds from the science side of things.

I remember those days, weeks, months waiting for you. Walking that journey with a few other mamas who were also expecting their own CDH fighter around the same time. Ultimately, each of us joined one of 2 “clubs.” The outcomes are improving, as the doctors would say, but still far too many mamas lose their babies. It tears me up each time. I know how close we came.

Some days, I wonder why I am planning an auction, or the race again, and then I stop and look at a photo of you and I smile and remember.. it’s for you. It’s for the mama who doesn’t get to hold her baby. It’s for YOUR future babies. How can I NOT do any of this? You inspire me to be so much more – to dream even bigger. I hope I can do the same.

I love you,

Your mama.

5 years old.

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Finley just turned 5 years old on the 12th of this month. She is a force. She is so self confident and comfortable in her body. It is not unusual for people to meet her, have a lengthy conversation where she does a lot of talking, and they turn to me and comment about her personality.  The things she says, she shocks me at least once a day. She is such an old soul. God has BIG plans for this one, I can just feel it. She continues to astound. Her last X-Ray in January was clear and her repair is holding strong. She had her last ultrasound in the spring for the not-cholodochal cyst and to check for Wilm’s Tumor (both clear).  Both are now on a once a year schedule to check. At her well child she continues to actually go UP curves and is now in the 32% for weight and 50% for height. At 4 she was 25% and 25%, and at 2 she was 5% for weight and 25% for height. She usually runs or skips as her preferred speed of movement. I fall in love with her more and more every day.  She can be feisty and throws a tantrum with the best of them, but will usually yell at you to “leave her alone” so she can calm herself down. She starts Kindergarten in a few short weeks and though I am so excited for her and am so blown away that she is actually ready at 5, when faced with a HUGE list of all those things that “could happen” with CDH, but I will miss my alone time with her. She is developmentally completely on track and even advanced in some areas.  So many answered prayers. Don’t forget that my wonderful reader.  When I go back to the beginning of this blog and reread my prayers, and the prayers offered up by others I am brought to my knees with gratitude. 5 years ago today, Finley was trialing the conventional vent, and we were praying she would be strong enough for surgery. A few days earlier, a doctor had spoken to me, trying to prepare me that she might not make it. I didn’t hear those words. I just heard that there was a chance and I remember telling him, “there are so many people praying for her, all around the world.” I knew the gates of heaven were being shaken with petitions on her behalf. I don’t understand why some prayers are answered and some are not but I will never take for granted the truth that a miracle was performed for our family. We get to look upon a miracle every day.

If you are a newly diagnosed CDH family- have HOPE. I could never have dared to dream we’d be where we are today. But I had a mustard seed of faith…

Psalm 28:7 NIV

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.”