Annie

I spoke with a woman today by the name of Annie. It was fitting really.  She is a case worker for Visually Impaired Preschool Services (VIPS).  Get the connection now?  She was fabulous.  She brought to me a wealth of affirmation, encouragement, and bottom line just left me feeling a little less lonely in my plight to give great care to my daughter.  Lydia is fabulous and sassy.  She is determined, silly, and smart.  If you aren't super aware when assessing her, you may completely miss that she has anything wrong with her at all.  From her perspective, she quite frankly doesn't.  She is happy, well-adjusted, and eager to learn and experience life.  However, as her momma, my heart has not always been free from sorrow or loss for what may not be for my girl.

Let's back up a minute and get a little background for any of you who have no idea what is up with her.  Lydia has nystagmus (her eyes bounce back and forth).  She was born with it which can be normal in newborns.  It never went away and seemingly got worse.  We had a MRI which ruled out brain tumors and have seen lots of specialists to figure out exactly what is going on.  Our last trip to University of Michigan's Kellogg Eye Center brought forth new findings.  We previously thought we were trying to figure out between two diagnoses.  It was either atypical ocular albinism which would mean stable low vision with no risk for losing her vision OR retinal dystrophy (which is a blanket term for a whole lot of things) which would mean potential for losing her sight and is a degenerative disease.  So we found out that instead of one or the other, Dr. Heckenlively (a world reknown retinal specialist) told us she is presenting with both.  He has never seen a patient with both and he isn't a young man.  He is brilliant and remembers a case from the 70's in the literature that he was going to study after our departure.  He was puzzled and curious.  We had genetic testing done and L is in a research study.  He does continue to encourage us the further we get along in this process that typically patients do not go blind but slowly lose vision.  Of the retinal dystrophies we have ruled out many that typically cause blindness.  Lydia has a cone dystrophy which essentially is the place where visual detail is processed.  Although glasses help her to see better, they can not correct her vision to normal sight.  

So we are waiting for test results from U of M.  Each of the doctors we have seen have been helpful and determined to find a cause for L but none have really given me any idea for how and what I can do now with my girl.  Jason and I study her all of the time and seek to find ways that we can help her to learn. Quite honestly, we have looked at each other on a number of occcasions and just cried for the unknown, for the fear of what she may miss out on.  We see how much she fakes her way through things because she can't see something.  We also see when she sees something for the first time.  We see when she loses all of her confidence when her surroundings change.  We also see the way her smile lights up a room and realize full well that perfect sight just isn't everything.  With all of that said, we haven't really felt equipped to meet her needs.  We often say things like, "I just wish I could see what she sees."  Well, that is where VIPS comes in.

A sweet friend of mine whose son is seen by VIPS shared the resource with me.  Shortly thereafter, I got the referral from our pediatrician who is just plain amazing.  As I spoke with Annie today, I felt so affirmed.  She worked at the school for the blind for 36 years and has never seen a child with both diagnoses either.  She has so much expertise in this field that it just slays me.  She reminded me that L doesn't feel a sense of loss or sadness for what her world is like.  She asked questions and confirmed many of our thoughts on L's development.  I had so often felt like it was silly to seek out help for L with as normal as she seems, but she encouraged me that now is the time to really dig in and help her to learn.  We talked about empty language because visually impaired children can often verbalize beautifully but it is not attached to meaning.  We have certainly seen a bit of this with L.  Not a ton but a little.  I am so anxious for her assessment and help. 

 I know that God has given us this resource for His good and glory.  I also believe with all of my heart that He can heal our girl.  We will wait and ask and wait and ask for His healing touch.  We also know full well that He can use all trials and sufferings for His good purpose.  We trust Him for it and wait expectantly to see mighty, beautiful things come from His hand.  I know one thing for sure, He is teaching me dependence and trust in Him as I continue the hard work of mothering my sweet little ones.  He has given me a husband to navigate through this with and a whole lot of joy as we go.  It isn't perfect but I believe He has a purpose!  We make mistakes, we fail often but I am reminded to just keep at it because He will have His way in the process!

"Keep on beginning and failing. Each time you fail, start all over again, and you will grow stronger until you have accomplished a purpose - not the one you began with perhaps, but one you'll be glad to remember."

-Anne Sullivan

If you want to check out their site, here it is:  www.vips.org