My New Normal

I think back to a year ago- I was pregnant, had just found out that Baby Baker was a boy, and was anxious and excited for the school year to be over. I am trying to remember what I thought my life was going to look like with Grayson- certainly I had no idea the rollercoaster of parenthood would have the twists and turns that ours does.

We saw another specialist today- a pediatric endocrinologist. And I’m sitting here thinking about the fact that for me, it wasn’t odd, or strange, to be going to an endocrinologist with my almost 7 month old. For me, it wasn’t weird that we saw a neurologist last week and had an EEG on Monday.  I’ve gotten used to wheeling Grayson into doctors’ offices, handing over my credit card and insurance card, and filling out paperwork as fast as I possibly can before he starts crying to get out of his carseat. I’m no longer apologetic when my baby is crying in waiting rooms, or while doctors are explaining complicated brain functions to me. I just bounce and shush G while learning as much as I can about the functions of the pituitary gland. My new normal is scheduling playdates around therapy sessions and making doctors’ appointments during naptime.

My new normal is also quickly becoming one of faith and being somewhat content with the unknown. I’ve learned in the last four months that doctors don’t know everything, and that a lot of their explanations are educated guesses. The endocrinologist today gave Grayson a diagnosis- Septo Optic Dysplasia, which is what the opthamologist suspected based on his observation of G’s optic nerves and the MRI. However, his blood test didn’t indicated any of the pituitary abnormalities associated with the disease. She warned me that just because his pituitary gland is functioning normally now, it may not in the future. She wants to run more bloodwork around his birthday. Looking at the symptoms of SOD, G has a LOT of them, but those symptoms could also be symptoms of other things.

I thought I would be relieved to hear a doctor give a “diagnosis” but I wasn’t. I think to me “diagnosis” means we know what’s wrong, we know if we can fix it and we know what the future holds. Nope, nope, nope. Septo Optic Dysplasia and Grayson Baker Syndrome (as diagnosed by his neurologist) both point to the same road- a road that isn’t very well lit, and we have no idea how straight and scenic, or windy and trecherous it is.

So I’m leaning on faith- faith that God knows what he’s doing and he has an amazing plan for my little dude. Faith that even though my new normal isn’t “normal”, it’s filled with love, hugs, kisses, and days spent with this amazing little baby who discovered today that his feet are delicious.

4 Comments

  1. Traci on April 21, 2011 at 12:19 am

    I've said it once, and I'll say it again….you're an awesome mommy for Grayson. I know that some days can be overwhelming and difficult, but you are keeping a positive attitude and loving that little man of yours! Good job, E!

  2. Erin on April 21, 2011 at 12:35 am

    Oh my that is a cute pic!!! Adorable and so cute that he found his toes! Glad that you got in to see the endocrinologist, at least you are getting to see people now. And really normal is different for everyone right? So you are right, this is your normal, and you are living is beautifully.

  3. basebell6 on April 21, 2011 at 1:06 am

    you certainly are on a rollercoaster; but you are surviving and becoming such a strong person in the process.by the way, grayson with foot in mouth = a 'YES' on the 9 month developmental survey at the pediatricians office that questions you on feet in mouth! we failed that question ūüôĀ

  4. Sarah on April 21, 2011 at 3:58 am

    Oh my goodness… he is going to town on that big toe! Such a beautiful, beautiful baby! And all those loves, hugs and kisses? They make for a pretty amazing "normal" (whatever that is!)

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