Wednesday, September 25, 2013

Redefining Perfect, Part 2


Right away, Addyson had a lot of quirks. 



She's pretty stinking, cute, huh?!?  Anyhow, moving on...

At the hospital, the pediatrician let us know we would need to follow up with a heart murmur that she had.  No big deal there, our son still has one to this day.  It's fairly common from what I understand.  Our pediatrician wasn't able to detect it at our first 2 check ups. However, nothing ever seems to be quite normal with Addyson, so I am still holding my breath there.

The pediatrician at the hospital was also concerned with her eyes.  She said to follow up with our pediatrician.  At first, the pediatrician wasn't concerned with her eyes.  Said they were fine, reacting to the light appropriately.  Then I began noticing some abnormalities.  One of the pupils would differ in size from the other in dim lighting.

Then of course there was the issue of her respiratory system that they were concerned with at birth, when she wasn't crying loud enough.  Her oxygen levels have checked out fine so far and the only thing that we worry about in this area now is that she's a loud breather.  Some days I worry, some days I barely notice it.

And to top all of that off, at our first doctor's visit, Addyson had severe jaundice and had lost 9% of her birth weight and I was told I had to supplement with formula.  Please refrain from comments on this issue.  That's not the focus here.  She's chubby and healthy now!  :)

So, needless to say, we had a lot already going on.  My sister and I have been calling Addyson "bad baby" in a loving way since the very beginning of pregnancy.  My pregnancy with Caden was so smooth and he just didn't really have any big issues, that this one just seemed all sorts of "bad."  Okay, so the people who are offended by this just need to get over it.  There's no such thing as a bad baby, they are all precious gifts.

We were thriving at home.  We had some things to follow up on, but we were doing good.  We were scheduled to have her 2 month check up.  Then came the big stuff--scary words.  Neurologist.  Hypertonia.  Opthamologist.  My world fell apart, crumbled. I was hearing my husband relay that the doctor was saying that my perfect gift was blemished.  There was something significantly wrong with her.  I am not sure how I remained standing, functional. Well, of course I know--this was the point when I entered a semblance denial.  It wasn't complete denial; I was making appointments and doing all the things I knew I needed to do.  But in my mind, I just kept thinking that we'd get to all these appointments and they'd say she was perfect.  Nothing wrong with your daughter, go home and enjoy your precious family.


Thankfully, God has orchestrated everything so perfectly.  I remember remarking to a dear friend of mine, I think that God put me here to prepare me and He gave me Addyson to make me that much better at my job.  Would I expect any less?  Last year, I was teaching in a highly stressful environment.  I was very grateful to accept a new position at a new district this school year.  I am no longer a teacher, but an education diagnostician.  I received my Master's of Special Education last May to enter this field.  I didn't pursue a job at the time really since my mom had just passed away.  It was a crazy time in my life.  So here I am now, a person in the field of working with special needs children.  In fact, I am the diagnostician for the two elementary campuses that have our severe and profound students who often times need speech therapy, physical therapy and occupational therapy.  I have at my finger tips all of the resources in the world!  On top of that, my sister works for Early Childhood Intervention (ECI) as a nurse, and formerly an Invervention Specialtist.  So with all of the resources, I knew I needed to call ECI to come out for an evaluation.  We made the appointment and then two others.

The next appointment we made was for the Opthamologist to look at her eyes.  I already knew the diagnosis (thanks google!), and that it was very common.  Addyson has Anisocoria.  It is when one pupil dialates differently than the other.  Not a big deal, in the grand scheme of things.  We would later find out that it was an indicator of a larger problem.

The final appointment made was for the Neurologist.  I knew that we would be having her evaluated for her high tone (hypertonia) and what if any neurological problems it could stem from.  It was at that appointment where my world as I knew it just got knocked off it's little axis of perfection and "the way things are supposed to be."

But in all of this, I can't help but think how blessed we are.  God chose us.  ME.  God trusted me to be the mother to this sweet angel.  He knew that our family has everything in the world to give her.  He's given us this amazing story of his faithfulness and grace.  I am in awe of how blessed we are.


Thank you to everyone for your overwhelming support and prayers! They are definitely felt! God is doing amazing things in our lives right now.

4 comments:

  1. Aimee, I continue to be touched by your life with dear sweet Addyson. Yes, you are SO right...she is SO stinkin' cute! Sweetness from the beginning. I trust you will continue to post as you are able about her progress and how we might pray for her and your family more specifically. Love the testimony your family is for the Lord's faithfulness and grace.

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  2. I will keep you and your family in prayer as I know the stresses that can come with a baby with extra needs. I had a baby born with a heart defect, so I understand the added care and appointments. Believing that God will give you the same peace that passes all understanding that he gave my husband and I. She is adorable!!!

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  3. Aimee, your story touched me in a special way. I have an identical twin sister. Her name is Jessica. She was born with cerebral-pulse and has since been diagnosed with three mental illnesses. I had a hard time as her sibling because I wasn't raised in a loving, christian family. The family I was raised in was very dysfunctional and both my parents were alcoholics. I didn't get the kind of consideration and love that healthy God loving parents would have provided. Why am I telling you this? Now that I am saved and have my own family; I have a special relationship with Jess.. My kids adore her. Now that I have a fuller scale view; having a sibling like Jessica has created a lot of love, patience, and empathy in me. God uses all things for "HIS" good. I'm not perfect, but most people are astonished that I turned out so normal. :-) It's all to God's glory, for sure. So I hope this gives you some encouragement and peace in regard to your beautiful son. May God bless you and your family. Melissa Patterson
    meeha10@yahoo.com

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So glad you stopped by! I'd love to hear your thoughts!

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