Dangerously more beautiful

It has been one month since our last update.

Hillary still feels compelled to share her story with openness and transparency. I checked. 

Last week, she presented with an unsettling new infection. She called me into her room with her usual, verbatim, “Mom, can I show you something? Don’t worry, it’s nothing bad.” 

She revealed an orange crusted-over belly-button. My heart sank into the lowest part of my being. I instantly visualized her in a hospital bed. She asked right away if she could go on the radio. She knows she has to find a hero to help her. 

We dropped everything and headed out for blood work at a lab. All of the supports available to us were incredibly responsive and we have much to give thanks for again this year. 

Our Pharmacist provided an ointment until Hillary could be seen by a doctor, Hillary’s Pediatrician saw Hillary as a matter of urgency (as first patient of the day, with masks on, in a private room), and CHEO remained in contact to provide care through the ER, if needed. 

Hillary received a prescription, gram-positive, antibiotic ointment along with a navel swab and we are awaiting the results next week to determine if it’s bacterial or fungal. It is improving already. It appears to be localized and her blood test was so good, we have all been put almost completely at ease this holiday weekend.

Hillary’s hemoglobin stayed stable at 118, her platelets rose to 250, and her neutrophils are back up to 2.2. 

What a gift. Hillary is ecstatic and wants to celebrate every waking moment. 

We will continue to push through the changes of time while not ignoring the fact that Hillary remains vulnerable, even in this highly sterile environment. Fighting Aplastic Anemia is a lifelong marathon, not a sprint, and we’ve kind of only just begun, if you can believe it. 

We’re just now coming out of two years of immunosuppressive therapy followed by two years of recovery. Hillary succeeded due to her perseverance and determination to get better. She pats herself on the back often. 

Just today, Hillary said she feels the best she’s ever felt. Ever. 

It’s our greatest achievement. 

We are so thankful to have made it this far. I think we did pretty well. We wiped out our entire life savings, severed ties with family, alienated the neighbors, and fear our future but, otherwise, we are proud of the firm, educated stance we took to assist Hillary though this rare, medical challenge. 

The last month of this journey has been truly surreal. 

The first day of school went by mercifully fast. Watching the girls say goodbye to each other really stung even though we knew it was inevitable as part of life. Our hearts raced all day as our bubble suddenly grew bigger, bigger, thinner, thinner… more translucent as it stretched and dripped with tears.

Dangerously more beautiful. 

Until it breaks. 

Alyssa has now completed five weeks of in-person school. 

It has brought all of us great and genuine happiness to see Alyssa flourishing. We’ve seen another boost in her confidence and we’re just overjoyed that she’s so content. She loves school. We feel that we absolutely made the right choice to integrate her with her peers in Grade 8. She had friends waiting for her. 

Alyssa hit the ground running and hasn’t turned back.

Her strong sense of independence gave her the best first weeks we could have hoped for. No stress. No problems. We had a plan. We knew what we wanted. It wasn’t too much. The school met all of our outlined expectations in advance. St. Mark’s staff continues to go above and beyond to communicate with us with care and respect. Our family values happen to match up with the school’s values. 

We are so very grateful for everyone’s understanding, including the parents in this community for raising the peaceful children who surround mine. They have made Alyssa feel welcome and accepted. 

It has been cruel to see Alyssa in a mask. I won’t lie. I agonize over it. I don’t know how much longer I can watch but… they’re just so darn effective at preventing illness and death.

Alyssa wears a black, CanadaStrong CN95 during school. She changes it at lunch. I don’t want her to wear the white, double head-strap 3M Auras. There is too much stigma and it’s too uncomfortable, though Hillary and I wear them exclusively in health-care settings. We spend more money on masks than we do clothes. 

Alyssa never complains. She knows it will change. 

For now, her selflessness is truly inspiring. 

She says it’s much easier than she thought would be. 

She says it’s really no problem. 

She is proof that masks work. 

They work to reduce the spread of viral illness. 

They do no harm. 

They save lives. 

I am going to share our mitigation strategy here. Our plan for when this airborne, level 3 neurotropic, vascular biohazard called COVID comes knocking on our door. When the bubble breaks. For every hundred of you who laugh at the minutia of it all, there is one mother reading this who is fighting the same battle. 

I write for her. 

For the vulnerable. 

I write to share the truth of it all. 

To show my devotion to Hillary.

As proof of where I failed after we’re gone. 

Alyssa’s new apartment is set up with windows in the front and back to allow a quiet box fan to cycle the air through easily, when required. She runs an air purifier in her room. She has three furnace vents, a return air vent, and a bathroom fan for a fully-functioning suite. I run a dehumidifier during the day to freshen up her space. The air quality stays under 450 ppm at all times due to these simple ventilation efforts. 

Ventilation is everything. 

We drive Alyssa to and from school. We wear a mask so she can remove hers and be free. The drive takes eight minutes through Rideau Forest and I can’t believe we almost moved from this location. 

Alyssa’s locker is on the end. She sits by the door. There is an HEPA air purifier running in all of her classrooms. When our family heard this was available through the school as a standard, we were speechless and filled with gratitude. 

Hillary and I have been meeting Alyssa outside in the parking lot every day for a quick trunk-lunch-and-walk before she heads outside for recess with her friends. It’s been an incredible way to keep the girls connected during the transition. 

It has kept Hillary afloat. Invigorated her. 

Next week, Alyssa will start buying lunch in the cafeteria and eat in a designated area (distanced) with her friends. She’s done it already a few times and it’s worked well. She has proven herself to be such a trustworthy teen through her actions and deeds and we want to keep making steps forward towards further integration. Towards freedom.  

Alyssa returns from school at 2:20 pm. I prepare her dinners on trays with notes and flowers and serve her through her french door entrance. When things get serious, additional layers of protection come into play to seal off the ventilation system from Hillary’s room. This is my best effort at mitigating asymptomatic transmission of viral illness, while giving Alyssa a private life appropriate for her age. 

She’s quite content being as far away from us as possible, as a regular 13-year old should be. It’s quite annoying how annoying she thinks I am. She literally wouldn’t be seen with me the other day in my sweatshirt.

She’s so beautiful and I miss holding her more than you could fathom. 

I am isolated from my daughter. 

We are actually playing level impossible. 

We’ve learned that as we go, however, the reins loosen a little and we are doing more and more together as a family. Things feel a little healthier with Alyssa’s fresh energy. We remain confident that masks work and that Alyssa is staying well and that we know how to stay well also.  

I’m drifting in the boat again. The motor is off and I’m too close to the rocky shore but it’s worth it to catch that pike. 

While we set Alyssa free, Hillary and I are on major defense. I won’t share how Hillary whimpered all night in her sleep the night before the first day of school. Or how she prayed for schools to be cancelled so she could stay with Alyssa. 

Instead, please know that she has been so very reasonable and agreeable throughout this whole process. Never difficult for one moment. She feels perfectly safe and secure with our new way of life. She is overjoyed to see Alyssa blossom in school, and feels safe in her home thanks to our new living arrangements. She is certain she made the right decision to stay in virtual school as she watches her friends rotate through illness. 

I have no idea what I’m going to do when Alyssa wakes up sick. 

Who will I prioritize care for? Will I care for Alyssa or stay with Hillary to keep her safest? Hillary has had a perpetual sore throat since birth, debilitating weekly headaches, and history of chronic nosebleeds. How do you think she will do with COVID? 

I’ve never prayed this much in my life.

With each passing day, a new layer is peeled back on the fabric of our reality here and it’s very different from yours. My duty is to shine a light on this reality. To put it into words for your eyes to see. 

In all my years of journalism, I never thought I’d be covering my own story. 

Today, we will celebrate Thanksgiving. We usually celebrate on Sundays, but… we changed it. We feel like it is our most highly anticipated Thanksgiving yet.

We have so much to be thankful for. 

We have overcome so. very. much. 

This is the first time we actually feel stable as a family. 

The first time Hillary feels in control of her disorder. Her words. 

The first time Alyssa feels free and seen.

The first time we look at our child’s illness as a thing of the past.

Hillary says that sometimes in life, people must deal with difficult things, even at young ages. That she may have this illness, but there are people far less fortunate than her. 

That she wouldn’t change anything because she gets to help others now. 

That music makes everything better. 

That we are stronger together. 

Who could be more thankful than Hillary. 

#StartWithHillary