April In The Burbs

  Happy New Year, everyone! As we ring in the new year, I wanted to take a moment to acknowledge that celebrating with chronic illness can be a unique and challenging experience. For those of us living with chronic illness, the end of one year and the start of a new one can bring mixed emotions. On one hand, it's a chance to reflect on the progress we've made and the challenges we've overcome. On the other hand, it can also be a reminder of the ongoing struggles we face and the uncertainty of what the future holds. But despite all of this, I believe that it's important to celebrate the small victories and the moments of joy that come our way. Whether it's spending time with loved ones, finding a new hobby, or simply taking a moment to rest and recharge, it's crucial to make the most of every day. So as we welcome in 2023, let's take a moment to be grateful for all that we have and all that we've accomplished, and let's look forward to all the possibi

  One of the biggest things and words I learned early on when asking so many questions of the nurses and doctors working with Dot was "Advocate". At the time it didn't make much sense to me because I was doing what I assumed most every other parent or family member would do in my place, asking the questions. Literally asking questions about anything and everything I simply didn't understand. Why did they put Dot on a certain medication, or why do they use this machine, what does it do? Why are we keeping her on an antibiotic if she doesn't ultimately need it for what we thought she did? Advocating for your child who has a rare disease can be a daunting task, but it is also an important and necessary one. Here are the top 10 reasons why you should advocate for your child: To get a diagnosis: Many rare diseases have symptoms that are similar to more common conditions, which can lead to misdiagnosis or a delay in diagnosis. Advocating for your child can help ensure t