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Showing posts from August, 2014

Praying for my GFPD Family

Tonight my heart is especially heavy and hurting for many members of my GFPD family who are going through extremely challenging times. PBD-ZSD affects every aspect of our lives and impacts/puts extra stress on our relationships with our spouse/partner, child(ren), family and friends, our jobs, finances, and life in general. The grief each of us feel and are working through is different depending on where we are along this journey and can vary from day to day, but it is real and sometimes seems completely overwhelming.

Will you please lift up little Harleigh's family tonight? Harleigh is just 5 months old and she is severely impacted by PBD-ZSD. She is really struggling right now and she may not have a lot of time left here on Earth. We know that only the Lord knows the number of Harleigh's days (and ours) but her little body seems to be getting very tired. Would you join me in praying for a miracle, for healing, for comfort, for peace that passes understanding for the Webste…

A Change and Challenge-filled Summer (the short version)

This summer has been one of changes and challenges. Not all of the changes have been bad, but some of them have been and are continuing to be ongoing challenges. I'll share more in a longer update soon, but here is the short version of what's going on for our family.


Over the months of June and July Ethan went from walking dozens of independent steps in a row to not taking any steps, barely cruising, and basically not even wanting to bare weight on his legs/feet. To say that we are devastated about this setback and loss is an understatement. We are thankful that at this point Ethan is still mobile, he crawls and he scoots on his butt, but my heart aches for the boy who was on the verge of truly walking independently back in May that seems to be, at least for now, gone. Ethan has started school and we actually have his IEP meeting tomorrow. We are hoping that the new PT and the increased minutes will help us try to get some of this back. I want my son back. I hate this stupid di…