Quarantine :: It Works

While this new style of living is new to many of you, I’ve been living in a sort of “quarantine” for the past couple of years. My son, born with a rare chromosome disorder, multiple disabilities and chronic illnesses, isn’t yet strong enough to be in a group setting. He gets sick very easily, and a simple common cold will require a week of hospitalization in the intensive care unit.

Before we knew we would need to adjust our lifestyle due to our son’s health conditions, both my husband and I were working, and we had enrolled our son in daycare. The daycare he attended was for children with special needs, it was run by nurses, and it was very clean. It was a Godsend after two long years of surgeries, appointments, and diagnoses. I was finally working again, part time — teaching pilates during the day and gigging with my band in the evenings. But, my son kept getting sick, really sick.

Long story short, we had to take him out of daycare for his health. Well, not only take him out of daycare, but adjust our entire lifestyle: no group settings or school until he turns 5 or 6, this includes children’s playgrounds and activities, large playdates, family gatherings, and parties; no visitors who were coughing or sneezing; restricting public outings to less busy hours; frequent cleaning and sanitizing, and so on and so forth. I had to quit my job to be parent and full time primary caregiver, and overnight, I found myself feeling very isolated and alone. Did I mention this happened the year my husband was working out of state?

I know we are very lucky that I was able to stop working and be his primary caregiver, and I am grateful for that. But, by no means has this transition been easy. It is very stressful to be in charge of a fragile child’s surroundings, and even more stressful when you can’t control the outside world. It is isolating to not have people over, and it is very hard to find help because of the qualifications needed. No one can babysit if they feel sick or have been around someone who is ill, and they need to know how to use a feeding tube and feel comfortable taking care of a nonverbal child with exceptional needs. I haven’t had many face to face conversations with adults or peers, and when I do they are usually with my son’s therapists or healthcare providers. In the beginning, I had a hard time coping with the abrupt change and yearned to go out with friends or get back to work. It would be a while before I felt at peace with the situation, and part of the reason I’ve come to terms with it, is because it has worked. 

Today, I am proud to say that it has been a year and and a half since my son has needed unscheduled medical care or a hospital admission. The isolation, grief, and stress have been a small price to pay in exchange for the health and development of my son. He has made huge strides in his physical and cognitive development in the past year. As hard as it has been, I would do it ten times over.

For all of you who are new to this life, I know how you feel. I understand your frustration, anger, concern, boredom, grief, stress, and helplessness. It is hard, yes. But it is so, so worth it. Your sacrifice means so much for the wellbeing of our community and our world.

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Cristina Perez is a firm believer that while life is complicated, that is what makes it beautiful. A born and raised New Orleanian and fierce disability advocate, Cristina is a singer, activist, writer and mother to three-year-old “Oskie” — her son with a rare disease. With a mission of giving a louder voice to mothers of children with disabilities and rare diseases, Cristina creates original music inspired by untraditional motherhood, positivity and inclusivity for all. Her latest single, “Lessons I’ve Learned” was released in 2019, as an uplifting anthem for mothers to turn to when things get tough – a motivation to remain strong despite what life throws at you. Cristina also authors a popular blog called “It’s Not Too Complicated,” where she breaks down the trials and tribulations of medically complex motherhood, marriage and everyday life while using her voice to promote rare disease awareness.

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