When the world went into lockdown a deep ease came over me. Friends were calling and reaching out saying they were thinking of us since Jude has a lung disease and COVID affects the lungs. Meanwhile, we were truly safe for the first time. Everyone became hyper vigilant and sanitized and cautious. Everyone had entered our styled of navigation of the world.
While this year has been more than a shit show and brought to light systemic racism, a failing health care system, the lack of livable wages, white supremacy and so much more, the bubbles that we all inhabited kept my child safe and well. Without any sicknesses for well over a year now (knocking hard on wood over here) Jude has had a chance to be in wonderful health. Generally each mild cold knocks him back a little more but this year he’s gotten to be just well.
Of course, his wellness still takes the daily vigilance of 45 pills a day, 1.5 hours of breathing treatments a day, a diet free of gluten and dairy and as from scratch as possible. It takes raising him to believe in his capabilities and his thriving.
Because of his unique mutations we are still awaiting a drug that has been stuck in the FDA approval process for a while now. This drug has the possibility to change the course of his disease and thus his life. Those who are already on it have seen remarkable change in their lung function and the wonderful news of maintaining higher lung function over time.
I wait every day for the call that this drug is ready for my Jude. This year we will not walk in honor of Jude and all of those who have lost their battles to CF due to COVID, we will simply ask for a gift no matter big or small to get this drug into our hands before too long. If you knew (or know)my kid, you’d know he is someone who emanates sunshine. Who thinks with his heart forward and ready. Is a dear, loyal friend to many, who lives to learn and be challenged, who is an animal lover to the core and voraciously reads books he loves.
If you have anything extra to give at this time for Jude and all those battling this disease each day, to you we give our thanks.