Once upon a time…

Well, I have to start some time.  It might as well be now, as Maggie has passed out on the floor mid playing. I miss consistent naptimes. (and a quick disclaimer: I wrote this about 3 months ago, but couldn't think of a name for the blog, so never posted it. We've since moved to a new apartment, but it's still a good starting place, with the added bonus of it already being written :))

Anyway, meet Maggie:

She’s my beautiful 2 year old daughter. We have a lot of fun together. She loves to play at the park and go on walks.  If she had a choice she would have me read to her for 4 hours a day and sing with her for 3 more and all of this would be done outside interspersed with trips on the swing and slide.  She loves her daddy SO much! Going on a walk with daddy to get the mail when he comes home from work is one of her favorite activities.  They wrestle and tickle and throw balls to each other.  She talks my ear off and loves to learn.  She loves talking to her Grandmas on the phone and playing with her friends at church. She is also blind.

Maggie was born July 25 in Rexburg, Idaho.  When she was 4 months old I started to worry because she wasn’t looking straight at anything, tracking when something moved in front of her or showing any interest in light/dark/colorful things.  My husband, Brandon’s aunt Kathy is a neo-natal nurse. When we were visiting at Thanksgiving she mentioned that Maggie might be blind.  Which if course put me in an internal tornado of disbelief and denial, with a little worry and questioning thrown in. I appreciate her honesty. 

When we got back from the in-laws I took Maggie in to the doctor to get her 4 months shots and check up, and just mentioned my worries.  He referred us to an ophthalmologist, and she was quickly and easily diagnosed with Bilateral Optic Nerve Hypoplasia. In a nutshell, the optic nerves did not form all the way, so instead of her brain receiving a gushing river of information from her eyes, there is only a slow, trickle.  To learn a bit more click here.

Most of the time people with ONH have accompanying complications in the brain with their pituitary gland and corpus collosum. We took Maggie down to Primary Children’s Hospital in Salt Lake City so that she could get an MRI in December. I’m sure some of you know, but it is truly heart wrenching to withhold food from a 5 month old all morning, then help hold her down as she gets an IV so she can sleep through the 45 minute MRI of her little brain.  Turns out she’s fine! Her little brain is working beautifully, the only problems they saw were with the optic nerves.  We couldn’t believe how blessed we were. I did not relish the thought of giving her hormone shots for the rest of her life.  

We were soon able to contact the Idaho School for the Deaf and Blind and the Infant Toddler Program.  Through them Maggie was able to start occupational and developmental therapy when she was about 9 months old. They brought her new toys every week teaching her fine and gross motor skills, compensatory and cognitive, social and self-help.  She learned a lot and I think, more beneficially I learned a lot. Nancy, Marci and Melissa helped me to understand what I could be doing to help Maggie, and I am so grateful for them!  Maggie learned how to crawl, pinch, moo and find her toes. We worked with (and still do) the Oregon Project. More info here.  It has ideas and check lists of what kids should be able to do from birth to 6.

We moved to Boise for a while and were able to transfer to some different therapists, but soon moved on to Seattle, and have finally settled in the Bay Area of California.  I was so excited when I found out that one of the best schools for the blind was only 15 minutes from our new house. I called them up when moving had calmed down a little, and was greeted by the information that they do not have any programs for the kids until they are 5 years old. CRUSH! Drop the phone in disappointment and loss of hope for my 18 month old daughter who could still definitely benefit from therapy.  I’m very disappointed in myself to admit that it took a few months before I really put forth the effort and found the Blind Babies Foundation in Oakland.  They introduced me to Sandra, our current toy bringer.

Sandra is a vision specialist that works for our school district.  She visits us once a week bringing different activities and toys to teach Maggie new skills. I feel she does the most help by giving me ideas of what to do with Maggie, how to provide her with new situations and help her to learn more about a world she can’t see.  We’ve recently started taking walks with her little walker toy (borrowed from Sandra) and touching everything she runs into. Fire hydrants, fences, flowers, grass, even bumps in the sidewalk.  She loves taking her shoes off so she can feel what she’s walking on. She’s so independent, and so brave.  

We have been really blessed in the help we’ve received.  I am so grateful for my little girl.  She lights up my life like no one else can.  She is beyond precious to me and my husband.  She gives the best hugs, and she melts my heart with her little smiles.  I’m writing this as an example of what our lives are like, of ways we find to help our daughter, and of how we find happiness and beauty all around us.

Please ask me questions. If you are in a similar situation, I want to talk with you, share ideas, find out how you get your child to eat gooey, sticky or slimy foods, because Maggie will have nothing to do with them. 

We love our life, and our little darling. May you and yours find happy days.