Veya Hope VanderBrugghen

  "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 ...

"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...

In the midst of harsh moments at the hospital, with the overstimulating beeps, the bright lights, the door constantly in rotation with different teams coming in with updates, I’ve discovered something vital as a mom to a medically complex child.    When it all gets too much, just reaching out to stroke Veya’s forehead and to hold her hand brings a lot of comfort.  This small gesture goes beyond calming her and soothing her fears; it’s about feeling connected in a world of medical uncertainty.  Our children, dealing with challenges too complex for words, find reassurance in our touch.   It’s a promise that they are not alone as they go through tests and procedures that might feel scary to them. When I hold Veya’s hands it feels like a prayer, a quiet moment of peace amid chaos, reminding me of God’s ever-present light during challenging valley like moments.   As we take another step forward in this journey of unknowns, we do it hand in hand, strengthened...

"And the LORD will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail."   Isaiah 58:11 We did it!  We are back at Sick Kids! But what a ride it was to get here…. I went to visit with Veya last week Wednesday morning and to my surprise was told “she is moving today, this afternoon!”   So, I had to quickly clean up her room, take the artwork off her walls, empty the cupboards and bring that all back home, pack up a quick bag for myself and then circle back to Mac ready to join Veya for the ride.   Once I got back, I was told her transfer had got bumped to 8pm.   Perfect.   I went home again to enjoy a meal with the kids and say goodbyes to them and headed back to Mac.   Only to be told that her transfer got a further delay and wouldn’t happen now until midnight.   No problem, we know these things can happen and ...

"In all their affliction he was afflicted, and the angel of his presence saved them; in his love and in his pity he redeemed them; he lifted them up and carried them all the days of old."  Isaiah 63:9  204 days inpatient… What a journey it has been. We are still taking things one day at a time. Veya’s current health concerns remain a mystery to her team.   They have found no answers yet as to what is going on with her liver. Her enzyme levels along with her bilirubin continue to climb.   It breaks my heart because I can physically see that her liver is not functioning the way it should be by way of her color.   But Veya remains so strong and continues to persevere through each health challenge that has come her way by the grace of God.   She is such a fighter and is a million times stronger than me.   Each day we have to choose to fight.   Fight for joy, fight for peace, and fight for Veya to receive the best care possible.   That best ...