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.”