Monday, February 20, 2012

Trying Hard Not to Complain

Years ago after one of my miscarriages, I asked a good friend who was also a counselor and my mentor "why me?"  Her simple response: "Why not you?"  Again that question came to mind as I had just returned from the pediatrician and received a written report for Sarah with documentation on why we should be eligible for government funding.  (I'll get into that in a little while)

Over the past 10 months, we have been given a plethora of information, news and diagnosis for Sarah.  It's one thing to hear it, process and then move on but there's something so much more concrete when that information is written down.  As I write this, I realize, I'm not just writing to share this but also for my own personal reference.  I am scared that if I don't get it typed out, I'll forget little details that may have been important.

We saw the pediatrician on the 16th.  It was our usual quarterly visit and {as usual}, Sarah cried.  No, let me rephrase that... she screamed.  The most invasive thing he did to her was check her ears and yet you would have thought she was being tortured.  She weighed in a 28 pounds, she's 37 inches tall and her head circumference is 44 centimeters.  You can see in the picture below that her head is considerable below the "average" and this is why she has been diagnosed with severe microcephaly:

In order to receive the Child Disability Tax Credit, we needed to have a whole packet of forms filled out by both us and Sarah's doctor.  

The diagnosis on the report says:
- significant global developmental delay
- severe microcephaly
- sensory issues
- FTT (failure to thrive)
- poor balance
- hypoxic ischemic event (Hypoxic ischemic encephalopathy is characterized by clinical and laboratory evidence of  brain injury due to asphyxia or lack of oxygen) 

Effects of impairment:
Sarah is markedly restricted all of the time in her basic needs of walking, dressing, feeding, speaking and mental functions necessary for everyday life.  She is unable to speak as to be understood even by those familiar to her.  She requires an inordinate amount of time to dress and feed herself due to strength and dexterity in her upper limbs.  She is at significant risk of falling as a result of her poor balance and lack of coordination .  Sarah needs daily support due to and inability to accurately interpret her environment.   Her abilities related to self care, health and safety are of major concern.  She will need on going medical care and community supports such as PT, OT, and speech.  Sarah certainly should qualify for the CDTC. 

Well, there was no sugar coating on that was there?  I'll admit, lately I've been struggling with it all.  As Sarah and her peers get older, I can see the developmental gap growing.  Things that other 3.5 year olds are doing now, Sarah may not do for another 18 or more months.  I can see other kids starting to talk down to her as if they know she's "younger" than them and it makes my heart hurt.  I keep wondering how long is this grieving process going to last?  Although I have accepted it, will it ever not be something on the forefront of my mind or will it continue to be such a huge part of my thoughts?  There are just some days that I feel so empty and sad.  It is painful at times when I realize that she may never reach the same level as her peers. 

Now, all sadness aside, I have the happiest little girl in the world.  She has five of the most doting family members who adore her and are pretty much willing to satisfy her each and every whim.  She certainly has us all figured out.  When she curls her little body around me at night and I look at her long lashes fall on her sweet pixie face, I am reminded of how blessed I am to be her mom.  Her contagious giggle, love of monkeys and play doh, excitement over the smallest things, and complete adoration she has for me are just a few of the reasons that she is perfect in her own way.  

My prayer today is that He will help me to accept Sarah for everything she is, not for what she isn't.  Help me be strong at times when I feel weak and feel run down.  Let Sarah's constant joy radiate through her like a light of Jesus.  Help me to work with Sarah to help her reach HER full potential through play, friends and days filled with fun.  I will {try} not to compare her with others because it isn't fair to her.  She should only be compared with herself and what she has already accomplished.

1 comment:

  1. Stephanie

    I'm not sure what to say except that you continue to inspire me. I read about your journey and I see courage, faith and most importantly your love for Sarah. Truly beautiful.



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