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Harper

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Latest journal entry

Tuesday, Jan 10 - Jami

Well, 2016 has slowly slipped out of our hands and we have welcomed 2017 into the picture. Zach and I attempted to sit down the other night and make a pro/con list of events that took place in 2016. I initially thought that one side might heavily outweigh the other; however, both sides of the list stayed neck-in-neck. I wouldn't necessarily say that 2016 was a "good" year or a "bad" year. It was definitely a trying year, and a year that has rocked mine and Zach's world as parents.

I thought after my dissertation that I would have time for "me," but I have learned that that doesn't exist (especially when you have 4 small kids). One of my big plans was ready for fun; not reading research for regurgitating it into a lengthy paper that no one else, other than my committee, will ever read. However, reading for fun has turned into reading for my own mental health, as I continue to attempt to understand the "why" and now the "how to move forward" when it comes to Harper's situation.

I just completed a book titled "It's Not Fair: Learning to Love the Life You Didn't Choose." You see I never dreamed of having a big family. Four kids was never in the picture. In addition, who dreams of having a special needs child? I feel as if I am the most woefully, ill prepared person for God to choose to live the life in which he has given me. Wow...me? Wow, He must think highly of me? Or, maybe wow, He has decided to give me way more than I can handle so that I continue to learn to lean on Him. Whatever the case may be, I am trying, but I feel like a life preserver with a small hole in the middle. Yes, the life preserver that is slowly losing air.

Outside of still working 40+ hours per week, I spend my days fighting for my kids, which includes hassling the insurance companies, driving Harper to umpteen doctor appointments, attempting to apply for and be granted a Katie Beckett waiver for Harper, trying to find daily sitter coverage for my sweet baby girl, and sorting through mounds of paperwork that pertains to all of them. Regardless of all of this, God is good and we are blessed. Learning to find joy in the life He has given me can be cumbersome at times, but I know that His hand has been in all of this regardless of the times I have felt empty and alone.

This week, Harper met with a new feeding therapists, and she stated that Harper, at 9 months, was functioning as a 1 month old. While I know this, every time I hear it, I feel like my heart is being pierced. On a good note though, I did thoroughly like the feeding therapist, and Harper will now be visiting her two times a week. Harper also has PT this week and a GI appointment. Please pray for the following:


1) Harper to easily hold her head up on her own. The therapists state that she has to be able to do this before she'll ever be able to sit on her own.

2) Harper to not be orally adverse. We need to want to take things by mouth.

3) Harper to physically start grabbing and holding stuff. She is not using her hands much, which isn't helpful when it comes to overall progression.

-Jami