Veya Hope VanderBrugghen

One year ago I wrote this letter to Veya not knowing the journey we’d go down….   Dear little warrior, Induction is scheduled for tomorrow and after nine long months we finally get to meet you!   Shepherding you into this world has been an honor and one of my favorite life journeys.   You are so loved, you are so treasured.   You have been prayed for over by more people than I can count.   But, you have a long journey ahead of you, little warrior.   You’ll have to be brave.   You’ll have to find your strength.   You’ll have to learn how to fight for your life every minute, every hour.   But you can do it, I know you can.   God is here carrying us all. We will be next to you, always, every step of the way.   We promise to pray over you and love you.   We promise to hold your hand through recovery….read your favorite books…and sing you your favorite songs.   Above all we pray you will recover quickly so the world gets to...

"I wait for the LORD, my soul waits, and in his word I hope"  - Psalm 130:5 In the waiting, I’ve quickly learned that life keeps moving and so should I. Baking our favorite sweet treats on Saturdays with our children has become a small, joyful practice, reminding me of God’s goodness in the little things.   Those warm, gooey treats aren’t just a delicious snack, they’re a reminder to savor the sweet moments, even in the challenging seasons.   Scheduling that much needed rest care, even if it’s just for an hour, or a week/two break form the hospital… has taught me that taking care of myself is important too. It’s about stewarding the life God has given me even in the midst of the waiting.   Also discovering the importance of celebrating inchstones… not just milestones, recognizing that each tiny step is a tremendous victory and blessing.   Advocating for Veya has revealed a strength I never knew that I had within, pushing through exhaustion because her potent...

  "The LORD is my strength and my song, and he has become my salvation; this is my God, and I will praise him, my father's God, and I will exalt him"  Exodus 15:2 “Glass Child”   A term used to describe the challenges of siblings of children with disabilities or serious medical complexities/chronic illnesses. The term refers to the idea that parents seem to “look right through” their healthy children due to the demands of caring for the child/children with a disability.  Jeremy and I often think of all the feelings that we are processing, that undoubtedly, our healthy children must be feeling them too. However, they are trying to process and keep up with everything through the lens of a child, without the maturity to really be able to grasp the magnitude of their little sister’s medical needs.  This is an aspect of being a medical family that I haven’t discussed too much here, it’s not super easy or fun to talk about it either …it’s even harder to navigate. Th...

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...

"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 ...