Studying James

Mar 27, 2012

Last month in church, we studied James 1:2-4

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

We know this verse intimately. It is our truth.

Since my pregnancy we have experienced:

  • countless ultrasounds, fetal monitoring and check ups
  • strict bed rest for 3 months
  • living in the hospital antepartum unit for weeks
  • an emergency c-section
  • our baby being in the NICU for 7 weeks
  • being told that baby would never even breathe on her own and was brain damaged
  • processing the facts that our daughter was born with complex special needs
  • numerous brain MRIs, scans, EEGs, procedures, surgeries
  • 8 seizure drugs and a special ketogenic diet
  • frequent visits with a pediatrician, neurologist, gastroenterologist, surgeons, urologist, geneticist, nephrologist and soon to come sleep specialist.
  • physical, occupational, and feeding therapists
  • a case worker from the State
  • wheelchair clinic
  • medical equipment
  • multiple insurance companies (need i say more?!)
  • a gtube
  • special education evaluations
  • learning to provide total care for our daughter medically and physically as she grows
  • realizing we may never have a child who sleeps through the night
  • watching our baby be held captive by daily seizures starting at 5 months old
  • 2+ years of 1-2 hour nightly screaming fits
  • panic attacks (me)
  • battling jealousy and bitterness over others “normal” children
  • mourning the loss of the dreams we had for Claire

And this is just the beginning. I don’t even know what hurdles we will face when Claire is too big to carry… or starts puberty… or can physically hurt me. Or when people start making fun of her.

I’m putting all this out there not for pity and not to complain. But because this is our reality. And despite all these indescribably hard things, we still experience true joy on a daily basis. And so does Claire. And I believe it is deeper joy than we would have known if she would have been born without disabilities.
If I spend too much time dwelling on the difficulties and wishing she was different, then I miss out on all the amazing things that make up Claire. And I miss out on the beautiful things that God is revealing to and through her valuable life. As mentioned in church, our struggles have developed humbleness, compassion, and community in abundance in us personally. Claire has taught us about the love of Jesus, miracles, strength in spirit, and what truly matters more than we could have ever imagined. She may never learn to walk, talk, or feed herself but she is brimming with knowledge and depth. Her very nature has opened our eyes to the bigness of small things.

Even more, the verses above urge us to think eternally. Because of our faith in Christ, we believe in something beyond ourselves. And we believe that this life here on earth is not the end. We don’t know how long we have with Claire (as is the case for everyone). But because of Claire’s serious medical and developmental conditions, this is even more present in our thoughts. We know that all that happens in our lives both together as a family and individually is for the glory of God. Some of it is hard and sad. Some of it is happy and exciting. But our comfort and peace comes from the consistency that He is with us through it all. One of my favorite songs (and one that I sang to Claire throughout my pregnancy) is from David Crowder Band, “in joy and pain, in sun and rain, You’re the same, You never let go.”


by | Categories: faith, family |

7 comments | leave a comment

  1. Joe
    March 27th, 2012 at 2:57 pm #

    That is beautiful Nicky! That scripture truly speaks to us too and the way you describe it is perfect! Praying for you guys always!

    – Joe(Emily’s Daddy) 🙂

  2. Yasmine
    March 27th, 2012 at 3:02 pm #

    Thanks for the post Nicky, a reminder that God is Good.

  3. Alex Evjen
    March 27th, 2012 at 4:18 pm #

    I’m so thankful that you, Adrian and Claire are in my life. You have all taught me so much about parenting and worshiping God. This post makes me all of the more thankful for God’s Word and His goodness.

  4. Julie Coryell
    March 27th, 2012 at 5:24 pm #

    I stumbled upon your blog today & I KNOW that it wasn’t an accident. That verse is one that has spoken to me for a long time. Thank you for sharing your joys & sorrows. I have 2 girls on the autism spectrum and I know that the Lord chose my husband & I to parent these 2 precious souls. He sees in me more than I have ever seen in myself. Through our struggles we have had heartache, but it has deepened my faith far more than I could have ever imagined.

    Thank you for the reminder that God’s Word is true yesterday, today, & tomorrow!

    Blessings to you!

  5. nicky
    March 27th, 2012 at 5:38 pm #

    Joe- Thank you. We are always praying for you, Erica and Emily too. I feel like I know you all even though we’ve never met 🙂
    Yasmine and Alex- You both are the sisters I never had but always wished I did. And I feel so blessed that you are actually my sisters now. Thank you for loving Claire so much.
    Julie- Hi! Thank you for your comment and encouragement. My close friend has two boys on the spectrum and blogs here in case you would ever want to connect with her!

  6. Aunt Sharon
    March 27th, 2012 at 9:13 pm #

    You are so eloquent Nicky…I really think you should write a book about Claire. She is such a beautiful little girl, and she is so lucky to have you and Adrian as parents! Love you!

  7. Bit
    October 3rd, 2015 at 3:27 pm #

    Hugely Important Video for anyone wannitg to become a Driving Instructor.I went with the AA’.I assumed that as it was a large firm I’d receive top quality training with an ordit registered Instruction. This wasnt the case, and only became apparent after I’d failed my Part 3 on two occasions. To make matters more frustrating for me, I’d already voiced concerns with the AA regarding the Quality of my Part 3 Training.

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