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Grayson’s story, Part IV: Grayson’s family now seeks to raise awareness for LE and LD

Grayson’s story, Part IV: Grayson’s family now seeks to raise awareness for LE and LD

A guest blog series by Sarah Brunskill, Grayson's mom; all photos credited to and used with the permission of Sarah Brunskill and Duane Howard.

Continued from Part III.

To say this last year was hard would be an enormous understatement, particularly of the first few months. Adjusting to a new baby is hard for any couple, but adjusting to a baby who has serious unexpected health conditions was something that no one could prepare us for. I feel robbed of my first hours with my newborn son, and I still struggle with this. Those early months were a roller coaster, and this diagnosis got the best of me. Early on, we were desperate for a diagnosis, a label, SOMETHING to tell us what the road would look like further down the path. But as the months went on, as more and more tests came back inconclusive, we slowly came to terms that the label would likely not come. As time has passed we have found our normal, our routines, and life has gotten a lot better.

As Grayson has grown this past year he has developed into an incredibly sweet, happy, silly, smart, and inquisitive soul I wouldn’t know how to live without. We are incredibly lucky that thus far Grayson has not presented any other symptoms outside of the swelling in his hands, feet, and legs. All of which are being managed and improving with daytime and nighttime compression garments. His swelling has become a part of him, and those who know him forget it is even there. As Grayson grows, we hope to instill in him that this disease does not define him, but it is a small part of who he is and his journey.

We hope to help raise awareness about lymphedema in the medical community and general public, and help others understand the necessary treatments and resources available to them so that other families don’t need to struggle to understand how to take care of their children as we did. We hope our story helps others realize that they’re not alone, and that there is a real community among folks suffering from lymphedema who are ready to help.

Return to Part I.