Through the Eyes of our Child... Anna

Joy: 

"a state of mind and an orientation of the heart. It is a settled state of contentment, 

confidence and hope. It is something or someone that provides a source of happiness." 

(source: www.theopedia.com)

"Rejoice in the Lord always. Again I say rejoice!"

Phil 4:4

Joy.  It's not an emotion.  Happiness is an emotion.  Many people equate joy with happiness.  But joy is much more.  I love this definition - it's an "orientation of the heart".  Joy comes from our walk with God.  It's part of our character.  It's part of who we are as believers.  Why?  Because our joy comes not from our circumstances but in the hope of the Resurrection, the hope of what is yet to come, the hope of being in the presence of the Almighty one day.  That is where our joy comes from.

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

James 1:2-4

How can we always be joyful and thankful in the midst of sorrow or grief or worry?  Because you, Believer, are not alone.  God's in control even when life seems like it's spinning out of control.  It doesn't mean we can't grieve - the Bible has many references to mourning.  In Ecclesiastes 3, the Bible says "There is a time for everything...a time to mourn and a time to dance..."  We have a God that brings us comfort in our most troubling times.  

"Be joyful always; pray continually; give thanks in all circumstances, 

for this is God's will for you in Christ Jesus."

1 Thes 4:16-18

This verse especially has been on my mind this week as we had a health concern come up for Anna.  

So it was a week for prayer.  For relying on God.  For trusting in His control.

Though The Eyes of Our Baby Girl
During Anna's 4 month old well baby visit on Wednesday, her pediatrician noticed abnormal eye movements called nystagmus.  There is a fine side-to-side movements of the eye as well as larger "pendular" movements of the eye.  Her eyes never have a steady gaze.  I had noticed this recently and filed it away under the "keep an eye on this" section of my brain.  

She consulted with a pediatric neurologist who recommended an opthalmology referral and an MRI of the brain.  At this time we chose to NOT dwell on all the possible diagnoses (ranging from normal to brain tumor) and just wait to see what came next.  We chose to trust God.  Not easy when this is your sweet, perfectly healthy baby.  Actually I think I was more stressed about the practical stuff of making arrangements for the other children during these appointments.  But, of course, God provided for those minor details as well.  (Thank you, Nana and Papa Milne!)

The opthalmologist appointment revealed that she has Ocular Albinism.  You can learn more about this at http://www.albinism.org/publications/ocular.html.  That's what I had to do.  Despite her blue eyes and brown hair and no family history on either side, she has a form of albinism (albino-ism) in the eye which is a genetic condition.  It affected the development of her vision in utero.  As a result, she will have some degree of permanent vision impairment (ranging from mild to severe, ie 20/60 vision to 20/400). Eyeglasses won't correct this (may help somewhat) nor will any therapies.  Adults with this describe it as not being able to see fine detail and having problems with depth perception. It will not worsen, and it may improve somewhat. We don't know how impaired her vision is, but I know she can see the ceiling fan and she reaches for toys. When she's old enough to talk, we'll do a visual acuity test.

The MRI isn't needed since we have an explanation for the nystagmus.  It is likely (25% chance) that she will develop strabismus (become cross-eyed) which will be surgically corrected.  Her eyes will be more sensitive to the sun and she will likely be more susceptible to getting sunburns, so sun protection is important.  And probably nothing more will be needed until she gets ready to start reading.  Then we'll go from there.  

Cloudy day last Saturday - eyes closed...
And yes, I laid her right on the grass.  She is our 5th child, afterall...

We are thankful. We are thankful that her condition isn't life-threatening. We are thankful that it won't worsen.  We are thankful for an observant, Christ-loving pediatrician.  We are thankful for a patient ophthalmologist who worked us into his busy schedule and didn't rush me through all of my questions.  We are thankful to have family members trained in special needs education.  We are thankful for the loving support of family and friends and all of their faithful prayers and encouragement.   

 And we are thankful that she can see us smile.  

And she smiles back.  

What a perfectly happy baby!

God is good.  All the time.