Saturday, March 27, 2010

Pain and Joy

Abigail just a few days old sleeping while papa held her.

I posted a song a few blogs back by J.J. Heller that means a lot to me. I was listening to it today and thinking about the line "I have asked a thousand ways, that You would take my pain away." I wonder what exactly that even looks like.
I don't feel sorry for Jason and I. There was a time when we were waiting on a baby that I remember starting down the road of "it's not fair" and "why do bad people, who suck as parents, get babies." I quickly backed off though. First of all it's completely not productive. It leads to bitterness, and the feeling that I for some reason "deserve" something that other people don't. And secondly there is no answer aside from the fact that we live in a fallen world.

One of Abigail's first smiles. :)

However I can't remember one time since finding out Abigail has NF where I sat and said "it's not fair." I have thought lots of things like I wish my daughter didn't have this, I don't want her to suffer, I pray that God keeps it mild or heals her.
So while singing this line today and thinking about what it would look like for God to take my pain away, all I could think of was a life where Abigail wasn't in it.
In order for me to not feel this pain, I would have to not be Abigail's mama. That is a somewhat harsh reality. Is the joy of being mama to a little girl worth the pain of not knowing what life will bring.

The last time Abigail slept on me. I was hot, she was heavy, and I loved it!

Let me answer with a definitive, no hesitation, no doubt, YES!!! Even if we had known about the NF before hand we would not have hesitated to be her parents. We were open to a child with special needs, and although I thought it would be something I was familiar with, like Down Syndrome, or cerebral palsy, I still wouldn't have hesitated. It's not easier because we were open, but it was less surprising, since we had asked God before hand to bring us the baby He had for us.

Abigail at Riley Children's hospital. Stressful day for mama and papa, and a fun day for Abigail. They have a McDonald's and a fountain with water that flows through the atrium.

So let me end with the things that make it worth while. A little girl nursing in the middle of the night, sleepily getting nourishment from her mama. A sweet naked baby after bath time...there's something about baby buns, and bellies, legs, and arms, that make life feel wonderful. The first time she rolled over. Sneaking in while she is sleeping to see her sucking her thumb. The first time she smiled. Watching her watch me as I moved around a room. The first time she laughed out loud. Big slobbery smooches. The day God healed her legs and she put weight on them for the first time. Watching her feed the ducks with her papa, then chasing them afterwards. Crawling for the first time. All of her signs that only we can fully understand. Lots of teeny little ruffly clothes. Sitting with her between my legs and braiding her hair. Watching her "click, clack" her beads. Hearing her say "mama." Watching her squeal in delight as she sees papa walking up after work. Seeing her doing things like eating and drinking by herself, that just a year ago I had to do for her. Having her snuggle up and suck her thumb on me when she's sleepy. When she gets really silly and starts belly laughing. Watching her tackle her papa. Seeing her learn something new. Her love for trains and sirens. Unprompted hugs. Pretending to talk on the phone. Watching her love her baby doll. Her very cute little wave. Hearing her talking gibberish when she first wakes up. Watching her do the motions to itsy bitsy spider, hokey poky, peace like a river, and twinkle twinkle. Making everyone within her sight join her in the motions to whatever song she is singing. When we pray for her and thank God for the joy she brings and she immediately does the motion for fountain (from I've got joy like a fountain). She does bring a fountain of joy into our lives.
And for these reasons and hundreds more, I will take the pain. I will smile and thank God for it. I don't like the pain, but it's worth it for the unending joy.

Abigail tackling and smooching papa.

Children are a gift from the Lord; they are a reward from Him. Psalm 127:3


  1. Great post! What a sweet little girl!!

  2. Sarah, my 16 year old with NF1, says to tell you that living with NF has not made her life bad, she just feels like a normal kid with extra doctor appointments. Her life has been good as will your daughters.