An Unforseen Diagnosis

Last week was full of ups and downs.

On Monday (the 18th), we got a call from our pediatrician. Results from Harper’s newborn screening (standard tests they take in the hospital a day or two after she is born) came back and there were abnormalities in some of her genetic mutations. Long story short, there was a chance she could have cystic fibrosis (CF).

Our precious little angel.

We were devastated. CF is a genetic disease that often causes respiratory infections; one that we didn’t have any control over. Immediately racing through our minds were questions like: how could this happen? was it a medical testing error? will this affect her life? why do we have to wait this long to find out for sure?

We found out this initial information on Monday yet the doctor told us we couldn’t get further testing until the following Tuesday. We had to wait over a week?! More than anything, the waiting and not knowing was what choked our spirits.

Thankfully, Jen was able to do a little leg-work and get Harper’s appointment transferred over to a different hospital on a different day. Instead of playing the waiting game and worrying over the weekend, we were able to go in and get the test completed and analyzed on Thursday.

After all was said and done, we ended up finding out Harper’s diagnosis: she is a healthy carrier of CF, which means it won’t affect her life whatsoever until she decides to have children when she is older. If her spouse also happens to be a carrier, there would be a 25% chance her child could have CF. It also means that I am unknowingly a carrier of CF (since Jen tested negative for the mutation that Harper tested positive for during her pre-pregnancy testings).

We were relieved.
We were comforted.
We were grateful.

It it begged the question: would we continue to glorify God even if “the worst happened”?

A friend of mine, who was praying for our little girl during the week, emailed me something quite challenging:

In principle, what would you and Jen do if Harper is diagnosed with CF?  Would it diminish your faith?  Would it call into question God’s goodness?  Would you become angry and disillusioned, or would you simply take it as His will and realize that everything will be okay.

I am saying that perhaps you and Jen might brace yourselves for every possibility, and remember that no matter what, He is to be praised.

While it has been a week since we received the “good news”, I have been chewing on that email ever since then. Do I question God’s sovereignty? Absolutely not. Is it hard to release control of things that are out of my hands and just trust? Absolutely yes.

Have you ever received unexpected news that stretched your faith?

55 Comments

  • bill (cycleguy)

    April 29, 2011

    The loss of a job (pastor of a church for 13 years) seems so small compared to this Dustin. Being told you have pre-cancer cells in your colon that have been removed and now have to have a screening every 3 years is small. Prayers continue for your family.

    Reply
    • Dustin

      May 1, 2011

      Thanks Bill… I appreciate your prayers and support over the last couple weeks. Really, I do.

      Reply
  • Matthew Snider

    April 29, 2011

    Great news brother. Been praying for you all since she came into this world. Hold her close!

    Reply
    • Dustin

      May 1, 2011

      Thanks, Matthew. From one Dad-of-girls to another…. thanks! :)

      Reply
  • Michael

    April 29, 2011

    I’ll do the condensed version. April wasn’t supposed to ever be able to get pregnant. And she did. They were worried that she couldn’t carry the baby full term. They wanted us to term the pregnancy. They said that the possibility for either the baby or her to make it through was slim to none.
    Six years later they both are healthy.

    Reply
    • Dustin

      May 1, 2011

      Wow, what an amazing testimony. I bet that you look at Ethan all the time and just say, “Thank you.” (And your wife as well :))

      Reply
  • Jon

    April 29, 2011

    Wow man..Praise God that little Harper’s okay. This is definitely something to chew on. Blessed be Your Name keeps popping in my head. I sit here, and honestly, I can’t think of anything…I mean probably right now..it’s not getting into a certain program a couple months ago, but even that seems so trivial.

    Reply
    • Dustin

      May 1, 2011

      Blessed Be Your Name is definitely one of those anthem songs during times like this. Thanks for the reminder, Jon.

      Reply
  • Jason Hughes

    April 29, 2011

    Wow Dustin, with five kids myself, I can only imagine the feeling you and your wife had throughout this experience. It really brings things into perspective.
    This is my first visit here, bud….inspiring! I can tell we have a lot in common:)

    Reply
    • Dustin

      May 1, 2011

      Sweet! Thanks for stopping by with the comment, Jason. 5 kids, huh? Props you to!

      Reply
  • Jim F

    April 29, 2011

    I have had several things – my daughter was life flighted with a mystery disease one time – they never figured it out. Loss of a job as Pastor after 8 years. Glad things are fine with your little one.

    Reply
    • Dustin

      May 1, 2011

      Thanks, Jim – I can imagine your daughter being life-flighted was a scary moment. And then the unknowns that followed… wow.

      Reply
  • jay sauser

    April 29, 2011

    thanks for sharing this with us all my friend

    Reply
  • Adam

    April 29, 2011

    Great news bro. Thanks fir sharing.

    Your friend raised some very challenging questions. That is the type of friend that I want to have though. The ones that will be there to challenge me and my faith. Even with the toughest of questions.

    Reply
    • Dustin

      May 1, 2011

      yeah, it sure was challenging… not even sure if it was something i was expecting to hear at the time. But after thinking about it, it was exactly what I needed to hear.

      Reply
  • Sandy Sandmeyer

    April 29, 2011

    Praise God for His goodness! I’m so happy to hear your precious child is healthy!

    On 1/3/2011, my husband had 2 grand mal seizures out of the blue. Never happened before. I believe his worrying about how the 1st seizure would affect his job caused the 2nd one in the ER. He’s had to be home for 6 months because he can’t drive and certified law enforcement have to be capable of driving. He can’t drive for 6 months legally because of the seizure. While it’s not devastating to most people, my husband is a very in control person. We’re found out that these seizures are probably genetic, which his mother won’t even acknowledge. Denial! His father had stress-related seizures in his 40’s and his brother has seizures due to a head injury as a teen.

    Basically, they believe that his were caused because of lack of sleep. Take care of yourselves, people! As well as not monitoring his blood sugar, weight gain, stress at work, and I could go on. I believe that he is learning to slow down and enjoy life. I wish he’d learn quicker, because he tries to take on everyone’s responsibilities, but he’s learning. We’re just dealing with some processing issues now. God help me!

    Reply
    • Dustin

      May 1, 2011

      Wow, and how recent all these things have been for you and your husband, Sandy. That must have been really tough as it was completely random and unexpected. Thanks for sharing. Also, thanks for your kind words… I really appreciate it.

      Reply
  • Adam

    April 29, 2011

    So glad to hear everything came our in the clear for Harper! (by the way I love that name) But i know all about the waiting game. Its definitely not fun.

    The answer is Yes… and it happened a lot over the 3.5 yrs of Gavin’s life. But the one thing that Karen and I had to daily.. and sometimes hourly was still believe in God’s goodness and His Sovereign plan because if we didn’t do that then we would just be a complete mess.

    Reply
    • Dustin

      May 1, 2011

      I thought of you last week, Adam. One of the things I appreciated from you (after stumbling onto your blog) was the openness about sharing what you felt over Gavin’s life. Thanks for that.

      Reply
  • Moe

    April 29, 2011

    First, I’m concerned about the “baby and child safety” around your home. I mean, she can flip over that thing and hit the floor. :)

    She is beautiful man. so cute!

    As for stretching faith and news: My wife losing her job while 8 months pregnant on a very tight budget. Not sure how we survived, but we did. Thank God.

    Reply
    • Dustin

      May 1, 2011

      Wow, talk about a test of faith! And Moe…. only you…. only you…. :)

      Reply
  • Joseph

    April 29, 2011

    Awesome news Dustin!!

    Your friend asks a tough but great question. Trust is something many struggle with especially during the tough times. We got news that my wife might lose her job earlier this year. She was worried, but I knew God had our back. No worries… She’s still working.

    Reply
    • Dustin

      May 1, 2011

      thanks, joseph! trust is definitely one of those things that is strengthened after the fact, but is necessary at that exact moment. thanks for the comment!

      Reply
  • kevin

    April 29, 2011

    A) Great News
    B) Great to have a friend like that, with that perspective
    C) We thought Gabe was going to have Down Syndrome. Some measurement in his neck was off, which slightly concerned the doctor, so we had more tests done. I played the confident card, but inside I was livid at the possibility that my kid would have this disease. Looking back, I’m ashamed at how poorly I handled it internally. After all was said and done, he was fine and didn’t have it (though even if he did, he would’ve been fine).

    Reply
    • Dustin

      May 1, 2011

      Thanks Kevin. Interestingly enough we had a similar experience with our oldest- We decided to opt-in with all her testings/screenings and she came back with a false positive for Downs. It was another one of those “waiting games” where my wife and I were nervous wrecks. We didn’t know what to do with ourselves.

      Reply
  • Tom

    April 29, 2011

    From what I know, Harper will always be in the hands of her Heavenly Father and she is also blessed to have You and Jen as her hearthly parents. I know God will use you all with or without CF and His love and Your love will endure. Thanks for sharing!!

    Reply
    • Dustin

      May 1, 2011

      Tom – thanks for always being so affirming. :)

      Reply
  • Terry Valencia

    April 29, 2011

    My heart is so full of thankfulness to God about Harper’s good news test results it still brings tears to my eyes! And yes, God is sovereign and in control of everything, and even if it was bad news, I would know that it was part of God’s will, His perfect plan for her life. Would’ve it been hard? Oh yes! But I know that God is worthy of my trust and He is a good and a very gracious God. I am always learning to pray, “not my will but YOURS be done. SO thankful D for His mercy on Harper and am thankful for you and Jen in being faithful to HIM! My prayer for Harper is that she comes to know and trust in God at an early age and be passionate to serve HIM all her precious life! To God be the glory in all things! Love you D!

    Reply
    • Dustin

      May 1, 2011

      Thanks, Mom – love you too. Thanks for the support, and encouraging words over the last couple weeks… reminding us of His faithfulness no matter what the circumstance.

      Reply
  • Justin

    April 29, 2011

    What sweet words from your friend man. I’m so happy that Harper is healthy and your family is movin’ forward without dark clouds looming. Praise God!

    In 2008, about 4 months after we lost Lynnette’s mom to stomach cancer, my mom received news that she had a lump in her breast. It turned out be benign, thank Jesus. But, seeing the worry in my moms face was heart breaking – not to mention we were on the heels of Lynnette’s mom passing. That period of about a year between the death of my mother-in-law, and the scare with my own mom really stretched me – I was in serious “pray without ceasing” mode.

    Reply
    • Dustin

      May 1, 2011

      That had to have been a difficult time in your lives – thanks for sharing that man. Not only one things, but like you said, right after something else happened within the family. Justin, thank you for your encouraging words!

      Reply
  • Jason Vana

    April 29, 2011

    Glad to hear everything is ok!

    As for your question – last year my family went through the month from Hell: grandma and uncle were both in the hospital and both almost died at the same time, cousin lost her baby that her and her husband had been praying about for 3 years, my other cousin lost his job and they couldn’t afford their bills without his income, and every single day there was bad news.

    It was a tough stretch for sure, but knowing God was in control was the only thing getting me through – especially since I was driving back and forth to Chicago (3 hours one way) each weekend and taking care of two households (cooking and cleaning for my mom and bro who were at the hospitals/work each day and then mine when I was back here).

    Reply
    • Dustin

      May 1, 2011

      Jason, talk about commitment right there. It shows a lot about how much you care for your family. Thanks for sharing that!

      Reply
      • Dalton

        July 19, 2016

        Well done Amy. You have completed the chenallge. Remember to be very specific about colours and try and ensure you use a range of wow words.

        Reply
      • I think you’ve just captured the answer perfectly

        Reply
      • http://www./

        November 13, 2016

        Mon trio gagnant du moment:- Julie Holland- Alela Diane- Marie SiouxAuquel je rajouterai Wee et son album “you can fly on my aeroplane”. Une soul qui ne laisse pas l’auditeur indifférent. A écouter de toute urgence.

        Reply
      • höhe hauskredit einkommen

        February 11, 2017

        hay dos cuestiones en el comentario que deben ser tenidas en cuenta, la primera que una de las razones por las que feve llegó a la actual situación de quiebra, y no es otra que la apuesta total que ha hecho por los trenes turisticos, negocio que es ruinoso ademas de poco social, feve se ha dedciado a invertir mas de 100 millones de euros en trenes turisticos a lo largo de los ultimos años, y se ha olvidado de las necesarias obras de infraestructura que benefician a todos los trenes,,,,ese ha sido el error que la ha integrado en renfe y adif

        Reply
  • Craig Allen

    April 29, 2011

    We found out the day before Christmas in 2005 that our soon to be firstborn daughter had a possible genetic disorder. We found out after she was born that it is a rare disorder called, “Midas Syndrome”. Fortunately, she is not suffering any major long term effects from it, but it definitely has tested our faith.

    I think anyone that goes through something like that realizes that ultimately God is really in control, and while we like to pretend we can control our lives, everything (especially the big stuff) is totally up to him.

    Reply
    • Dustin

      May 1, 2011

      Wise words, my friend. Thanks for sharing that Craig. We certainly felt the same way over the last couple weeks … and really felt like we learned about God’s sovereignty and control over all things.

      Reply
  • Alex Humphrey

    April 29, 2011

    Wow Dustin, It is great news to hear she is okay! How difficult that must have been for your family. You have been in my prayers since I found out you had a new little girl. I’m sorry I wasn’t online to know this was going on.

    I don’t know what I would do if something like that happened to me. I believe you would continue to faithfully trust God. You would hurt for awhile, but in this He would offer you a deeper understanding of who He is, and you would respond as you always do: faithful.

    God Bless, brother

    Reply
    • Dustin

      May 1, 2011

      thanks Alex… always appreciate your comments. Thanks for encouraging everyone.

      (and no worries… you were getting married for pete’s sake… lol)

      Reply
  • Larry Hehn

    April 29, 2011

    What a relief to know that Harper is a healthy carrier. It’s trials and near-misses like this that help remind me to be grateful for all the blessings that we often take for granted.

    Reply
    • Dustin

      May 1, 2011

      Definitely take things for granted. Thanks Larry, I appreciate those words!

      Reply
  • Donald Borsch Jr

    April 29, 2011

    D,

    Hey, who’s sitting here and smiling like an idiot from ear to ear? Yep. THIS guy is! Right here, baby!

    My friend and brother…I am quite honored you would have included me in any of your posts. There is more to you than meets the eye, Dustin Valencia. Believe it.

    Con mucho gusto,

    Donald in Bethel, CT
    Yes, I am Project: Mathetes.

    Reply
    • Dustin

      May 1, 2011

      You rock Brother man. Appreciate you!

      Reply
  • Bryan Thompson

    April 29, 2011

    Dustin, so grateful to God that your daughter is healthy and has a chance to be a fun-loving, healthy kid! This is an unbelievable blessing, man. So happy for you. It does make you wonder if we would have the same grateful spirit if you found out the worst. Would you worship God because you felt obligated to and not because you truly felt grateful. I think God uses these times to remind us that he is GOOD to us. Not guilt us into anything.

    Thanks for sharing your story, bro.

    Reply
    • Dustin

      May 1, 2011

      Sure thing… and totally agree: this small part of our lives is now part of our bigger story. I would like to expect this kickstart other areas of my journey as well.

      Reply
  • ThatGuyKC

    April 30, 2011

    So glad everyone is safe & healthy.

    Reply
    • Dustin

      May 1, 2011

      thanks, buddy. I appreciate that!

      Reply
  • jenn

    May 5, 2011

    I’m happy to hear that your baby girl is healthy. (Even though I’m behind on my blog reading and I’m late commenting on this.) That must have been quite a scare.

    And I can agree that it is hard to let go and just trust God. That’s what I had to do when my husband left when I was 5 months pregnant. It wasn’t easy, but God brought me through everything just fine.

    Reply
    • Dustin

      May 6, 2011

      thanks, jenn I appreciate the word of encouragement. it was a scary moment, but we’re grateful. like you mentioned in your circumstance, trusting God is so important… and so rewarding.

      Reply
  • Nathan

    May 10, 2011

    Dustin, so happy to hear that your baby girl’s going to be ok. Sorry to hear you guys had to go through that scare.

    I’ve always feared receiving news like this, but fear it even more if it was someone else, like my wife or son. Fear of the unknown is something I struggle with often. I’ve been through some things that certainly stretched my faith, but nothing like this. I know this is something I need to hand over to God, but that is one tough prayer to pray.

    Reply
    • Dustin

      May 11, 2011

      thanks, nathan. it certainly was a ‘trying’ time that had us asking questions. thanks for the support!

      Reply
  • Jalen

    July 19, 2016

    I don’t have to wonder, Egaeus, because all my &#2BI0;82S” went away when I eliminated gluten from my diet. If you are sick to your stomach every night and are bloated, crampy, tired all the time, feel like you have some sort of unknown disease and now you feel totally better, you really become a believer that it is THAT SIMPLE. If you have no issues, great.

    Reply