Not everything about having a sick child is sadness, according to Calgary mom Xamara. There are blessings and there is joy through the experience too.
“I think my life has been richer because of some of the struggles we have faced,” said Xamara during an interview in her home December 1. “I have found a strength I never knew I had. And Diego has such armour and strength inside of him.”
Xamara was pregnant nine years ago with Diego and was put on bedrest for the entire pregnancy due to diabetes and hypertension. Diego was born with a facial anomaly, but beyond that, when he would eat Xamara felt like he was choking.
When Diego was just three months old, he was diagnosed with Goldenhar syndrome, a rare congential defect often characterized by incomplete development of the ear, nose, soft palate and jaw. Xamara believed there was also something wrong with Diego’s throat and begged hospital staff to investigate. Indeed, his throat was collapsed and he required a traecheostomy.
Diego requires 24-hour monitoring, something that would be impossible without the help of home care.
“We have had care for Diego for eight years. If I could multiply myself to care for Diego myself, I would. But thank goodness for the help we get.”
Xamara’s second pregnancy with her son Leo also required bed rest, which was impossible because of Diego’s needs. Shortly after Leo was born, in 2013, Xamara had a headache in the back of her head. An aneurysm had burst in her brain and she underwent two brain surgeries. She is still recovering from those surgeries and continues to get headaches.
“I begged God to let me recover from the aneurysm so I could care for my boys,” she said, with tears in her eyes. “I now have more ability to fight and have more joy in my life because of what we’ve been through.”
Diego, who is a spirited Grade 3 student, keeps a fairly consistent schedule, including his regular therapies. He requires hospitalization every so often due to health complications.
Xamara said the staff caring for Diego from Classic LifeCare has been incredible.
“I can be a bit of a momma bear and specific about Diego’s routine and the way the care should be done, but every one of the home care workers accepts that and it has been wonderful.”
She said her love for her children gets her through each day.
“I would give my life for my two children. They are the light of my eyes. They make all the hard times worth it.”