Veya Hope VanderBrugghen

Remember when I shared very early on that often on this journey, we take two steps forward and one step back?   Well, that’s exactly how this past week went. Veya was very irritable last weekend and just not herself. When I returned to Sick Kids on Monday the team made mention of it as they couldn’t sort it out and Jer had troubles consoling her Sunday when he was with her.   So, I put on my imaginary nursing scrubs and thinking cap and began investigating what was going on with Veya.   I scooped her right out of bed, surely, she just wanted snuggles with mom…. but that was a solid no.   It was more like a painful cry followed by a stern look of “put me right back down mom” from Veya.   The cry felt oddly familiar, she had the same cry when she fractured her right arm. So, I placed her back down and did the limb check.   Her arms were good, and she was happy to wave those around, however when I got to her legs, specifically her right leg I noticed it more swollen and when I touched i

"Behold, I have engraved you on the palms of my hands; your walls are continually before me." - Isaiah 49:16   I am so blessed to be a mother and advocate for the past six years, but in this last year I feel as though God has really changed me in the ways I approach both, and in those changes, it’s been helping me better understand Christ.      I don’t think I deeply appreciated Christ being our advocate before Veya was born.   For eight months (almost nine now) I’ve had someone’s name or a team in my notes to call or visit with daily to get updates and strategize what the next best steps in her care are.   Advocating is the relentless application of unconditional love.   It requires a dedicated mind and an unwavering selfless heart. Most importantly, it requires you to fully know someone – their passions, dreams, fears and challenges.   I didn’t fully recognize how much effort Christ puts into getting to know me and relentlessly fighting for me.   I did not appreciat

"The LORD is good to those who wait for him, to the soul who seeks Him. It is good that one should wait quietly for the salvation of the LORD."   Lamentations 3:25-26 Keeping in sharing the beautiful filled days along with the hard and messy days, this past week was sprinkled with a few of those hard and messy days for me. In the quiet moments sitting in Veya’s room watching her take a nap, or laying on the floor playing with her my mind would start to drift and it would try to make sense of how are we still here… sitting inside a hospital eight months later unable to bring Veya home.  It’s hard to understand why there are no answers yet for her liver, wondering when or if we will hit the AHA moment with her team.  Until…(what felt like a whisper) a reminder, that God is still unfolding his plan for her.  As parents, we are just here to be a vessel to love and care for her.  Her testimony is hers, and often times, it can alter the course of your own – and change many things a