During the holiday season leading up to Eliana’s birth, I can remember that excited feeling of knowing that from this point forward, the holidays were going to be so much different. They would now include playing in the snow, baking cookies and candies, highly anticipated visits from Santa, repositioning the Elf on the Shelf for the next day, even sneaking into the bedroom like my mom used to do so that I could quickly wrap presents before anyone saw them. Little did I know how different they would be.
Now, eight years later, all that excitement and anticipation surrounding the holiday season has transformed into grief and anxiety. I grieve over the fact that I wrap gifts that cannot be opened (at least not without full hand-over-hand assistance). I grieve over the fact that as Eliana gets older, I am still looking for toys in the infant and toddler section of the store (there are only so many light up toys that can be switch adapted).I grieve over the fact that I can make all the delicious treats in the world, but my daughter will never be able to enjoy them (unless it is Keto-friendly pudding). I grieve because we will never experience the joy of rushing outside with our daughter to build a snowman, or being woken up early on Christmas morning to see what Santa has brought overnight.
On top of this annual wave of grief, the COVID pandemic has added a new layer: Anxiety. The last time Eliana was exposed to a respiratory virus we spent 14 days in the PICU on a ventilator. Needless to say, we are taking precautions to try and limit Eliana’s possible exposure. This means no in-person school for almost 2 years, no adventures to crowded, enclosed spaces, and also no large family gatherings for the holidays.
President Teddy Roosevelt once said “comparison is the thief of joy” and I couldn’t agree more. While I try not to compare our experience with Eliana to others, it is so hard, especially during the holiday season when you are inundated with additional societal norms and expectations of what the holidays should look and feel like.
If you are struggling to keep up with the demands of the holidays, please know that you are not alone. Your thoughts and feelings are valid. It is okay to not put up the Christmas tree this year. It is okay to place restrictions on your time spent with others. It is okay to not be merry this Christmas. It is okay to not be okay.
Frequently Asked Questions
Drugs typically have to clear multiple clinical trial hurdles in order to support approval. The typical trial phases are 1, 2, and 3 with lower number being earlier trials and larger numbers being more advanced trials.
Phase 1 trials are typically in healthy volunteers and are evaluating initial safety, and dosing in humans. These trials help ensure that the drug is safe enough to be evaluated in patients and also are used to identify an appropriate dosing range for subsequent trials.
Phase 2 trials are typically used to provide proof of concept (that the drug has an efficacy signal, is providing a benefit to patients) and also tests safety in the patient population. These trials often are used to help design and power registrational phase 3 trials.
Phase 3 trials are often the trials used to support the approval of the agent and may be the final clinical hurdle a drug needs to pass in order to be approved by the FDA.
This is a designation granted by the FDA when a drug is being developed to treat a pediatric condition that is serious and life-threatening and occurs in under 200k people in the US.
This is a program used by the US government to incentivize drug development for pediatric rare diseases. If a drug is approved that has been granted the rare pediatric disease designation, then the developing company receives a voucher that grants priority review of a future drug (which can accelerate the developmental time of a drug by ~4 months; for example: if drug#1 is approved and had been granted the rare pediatric disease designation then said company would receive a priority review voucher that they could use on drug#2 ).
This is a designation granted by the FDA when a drug is being developed to treat a rare disease (occurs in under 200k people in the US).
This is a program used by the US government to incentivize drug development for rare diseases. Drugs awarded this designation received a number of incentives by the FDA including: 1. Market exclusivity for 7 years post approval, 2. A waiver of application of user-fees, and 3. A 50% tax credit for clinical testing expenses