TESSA'S DIAGNOSIS

This post is probably going to be long and depressing, it's mostly for the purpose of journaling.  I was hoping that when I posted about Tessa's diagnosis I would be relieved from the results of her MRI.  I don't even really know what to write because my head is just a big mess. I have so many thoughts, concerns and fears for Tessa.  When we were in Utah, Tessa had several appointments at Primary Children's Hospital.  She was diagnosed with Ocular Albinism.  So she's Albino.  But not the kind of Albino you think of when you think of someone with Albinism.   She doesn't have light hair or skin.  It's just in her eyes.  Trevor and I both carry the gene.  How weird is that?  Both parents have to carry the gene for their children to have it.  1 in 4 of our kids have the chance of having it.  So we won't be too surprised if we have more kids with it.  She is very sensitive to the light.  The doctor said when she gets a little bit older she'll probably cry when she goes outside.  She's farsighted.  She'll never be able so see things clearly because part of her retina isn't fully developed.  When she's trying really hard to focus on something her eyes shake and sometimes it causes her whole head to shake.  The doctor also wanted to do an MRI because she has been really behind in reaching her milestones.  She couldn't hold her head up until she was about 4 months old.  She still can't roll over and is just now learning to sit up and play on her tummy at 8 months old.  They aren't sure if this is due to her vision impairments or neurological problems.  We got the results from her MRI today.  She has a lot of space between her brain and her skull.  They're not sure if it's because her brain isn't growing or just because she has a big head like her Daddy.  Of course I am so hoping she just has a big Taylor head.  He's going to send the results to her pediatrician out here in Alabama and we'll go from there.  I don't think I've cried as much in my whole life as I have these past several months.  I've always dreamed of having lots of kids.  But I don't feel like it's fair for me to bring lots of children into this world knowing that they may have this.  It also breaks my heart looking at my perfect beautiful baby, and thinking of her in school getting made fun of.  I think that's probably what I've cried over most.  I know she will figure out how to do things with the eye sight she has.  But thinking of her feeling lonely and sad makes me so very sad.  It also makes me feel like I need to be an incredible example to her and let her know that I have a testimony of Jesus Christ.  She can always turn to him and our Heavenly Father for comfort.  I SO hope she knows that someday.  We met with a therapist for her last week.  I think she'll only have therapy once a month.  I wish she could have it everyday.  It's hard to see other babies and the things they can do that she still can't.  Not because I'm embarrassed or jealous, but because I feel like it's just a little preview of what's to come.  On a positive note, they do have olympics for the blind and visually impaired!  I'm going to eat a piece of cake now.  Or maybe the whole cake with a bowl of ice cream.