The first occupants of the Hope House: the Reuwer family.
For the last decade, Living Light Christian Church has had the privilege of supporting, sharing life with, and being served by a family that has endured immense trials with the health of their children. We have walked with Mike and Megan Reuwer through the ups and downs of grueling diagnoses and medical challenges and find them to be a perfect fit for the Hope House vision. Here is their story:
SIX precious people | FIVE children | FOUR still living | THREE with special needs | TWO in a wheelchair | ONE very tired dishwasher
Mike and Megan Reuwer are no strangers to suffering. Their first baby Evan was born without a skull and died within minutes of birth. In true against-all-odds Reuwer fashion, their next baby Rowan was born promptly on the front seat of the car on the Fourth of July. He’s 10 years old, enjoys good health, and for him it’s all about basketball, drawing, and video games.
Next came Phoenix, the medical marvel. Doctors had never seen an ultrasound as devastating as his and recommended termination. Today he is 8 years old; we are so glad he is here with us. Phoenix has severe spina bifida (his spine jutted out at a right angle from his body when he was born) and he has had countless surgeries, skin grafts and therapies to repair the wound on his back from that defect. In 2015 he underwent an extensive procedure at Children’s in Boston to have rods inserted that would give him increased lung capacity and a better position in his wheelchair. His body initially rejected the rods; the past 3 years have included ongoing trips to Boston for the maintenance of his high-risk “hardware” including expensive, extensive surgeries. Phoenix requires total assistance with transitions from bed and chair, daily enemas, lots of hands-on help with school, play, and physical and occupational therapy. He adores water, his iPad, facetiming his uncle and goofing off with his Papa.
Penelope is 7 years old and will be in 2nd grade in the fall. She was born with tetralogy of fallot, a heart condition that required an open-heart surgery at 6 months old. During an emergency appendectomy, surgeons discovered that she also has several “duplicate” organs. Her case is a real head-scratcher. She has many symptoms and specialists are still trying to diagnose her fully. In April 2016 she had severe pain that resulted in the removal of 10 inches of small intestines. Recovery is slow and steady. Penelope loves princesses, pink, purple, silver and gold. And strawberries.
The baby of the family is Genevieve – but don’t call her a baby. You can, however, call her Veve. She is teeny but fierce. Born with both spina bifida and a heart defect, hypoplastic left heart syndrome, requiring multiple (also open-heart) surgeries. She works hard in therapy and is striving to stand on her own, although at age 5 she gets around mainly in a wheelchair. She has her own set of physical challenges and limitations and needs to be catheterized multiple times a day. Veve loves sunglasses, snuggling, singing and pink.