First, there’s this (which I sang for days coming up to Emmie’s surgery and days after).
Today is Neurofibromatosis Awareness Day!
It’s almost been a year of living with NF. A year ago today, I was at home cuddling up and getting to know this little one who had shared my body for over nine months. I knew every inch of her by this time last year. I knew her tiny little fingers. I knew her sweet cries of hunger. I knew her grunts and her toes. Just six weeks later, we got to know more about how God had made her special.
A year ago on June 29th, I’ll never forget. Casually getting on to Google and researching the funny names of those little spots I had started to notice on her body. That was a year ago. But it seems like yesterday.
I’ve heard several special needs moms who have talked about holding their breath or trying to remember to breathe. Well, this past year has been a lot of breath holding and just trying to figure out how to breath. A lot.
First MRI, and Mark and I felt like we were forcing ourselves to breath while she was gone but knowing we took in God’s sweet air when she was returned. MRI report. “It’s really close to her spine.” “No compression yet.” “We need a better view.” Exhale.
Second MRI. More breath holding. And then the report. “No compression confirmed.” “We’ll monitor.” “Oh the kyphosis could just be positioning.” “Watch and wait.” Exhale.
Third MRI. More breath holding. We learned that it doesn’t get easier. Especially when your nine month old is burying her face in your chest while they try desperately to get a good vein. And then the report. “Kyphosis is bad.” “We’ll have to do more.” “Surgery.”
That last time took longer for us to exhale. Several times I had to remind myself to just breath. With each exhale a prayer went up to our God. I remember Mark one evening, too overcome with tears to pray and all I could think was “the Holy Spirit intervenes when we can’t.”
While we have had a lot of times where we had to remember to breathe, I would say more often than not we have enjoyed the sweet, sweet gift of our baby. Soaking in every bit of what we know all too well is fleeting babyhood. Sibling hugs, first smiles, first laughs, bouncing to music, joy in animals, sleepless nights of baby cuddles, splashing in the bath, soaking in the ocean, the sun, clapping, blowing kisses.
Today, I asked Emmie if she was ready for mommy’s milk. She stopped what she was doing and wanted me to hold her immediately and she reached for our spot. She has done this for the past twelve months without fail. I’ve rocked and nursed and cuddled our beautiful girl. It’s my prayer chair too, I guess. As I rocked and nursed and cuddled and prayed. Tears at times. Smiles and joy at others. Always lifting up our gift to the Lord. We would remember others who were walking a similar journey or one even harder.
Walking this year has taught us so much. We know now more than ever that each our children has been entrusted to us to raise for God’s glory. We’ve realized that we have no control over our children but we have rested quite peacefully in knowing who is in control. Trusting our Savior with our child, really all of our children, daily. We know that He knows the future for them all.
I rejoice in my Lord that not one tear, not one laughter has been overlooked by our Lord. That He knows each breath she takes and each one we hold as we await the next report or the next step.
