"This Will Change Your Life"

I was scrolling Instagram this morning and came across an influencer using this phrase to talk about a lipstick that was on sale. And this brought me back to a topic that I had been wanting to revisit here, especially with the Christmas season upon us. There is so much pressure to keep up with the latest and greatest, the newest fads and what everyone else is doing. Of course, life has always been that way, but with social media is so much more in our faces. Is any of this what will really change you life? No, and those of us with rare diseases or caring for someone with a rare disease know this truth all too well.

We all wish that we had something that would change this rare disease life - that would make life easier for us or our loved one in this battle. We wish for the cure, the treatment, the people around us or in the medical community that truly understand. Those are the things that would really change our lives. And unfortunately, very few of us have those things, or if we are luck enough to have them, have come by them easily.

I was on a support call last week for caregivers, as National Caregiver Month was coming to a close. It was odd for me as typically I have a working role on calls that I am on and for this one I was able to be the mom and caughter of people who have their illnesses instead of being the one just asking the questions and prompting discussion among participants. And I will tell you that was a breath of fresh air for this worn out caretaker - who has had a rough year herself.

What I found on that call was people who "got it" in a whole different way again. The diagnoses that we were all dealing with for our loved ones were all different, but our emotions and stories were so much the same. The feelings of missing out on what we see others experiencing in life, the heartbreak of watching our loved ones miss out or experience life differently than their peers, the fears of the future. But there was also a beauty in what we shared.

There was the woman that shared the details of her son's wedding a few weeks prior and their mother, son dance to "Lean On Me" and the tears and thoughts that brought. And the joy that we feel when our loved ones reach other milestones that others achieve that bring joy to everyone, but having been through this rare disease journey - our joy is a little bit different. And that is ok - we are allowed to feel a little more happiness, a little more of the bittersweet of the moment, we know that we went through a lot more to get to these moments.

So, as you prepare for this Christmas remember that yours may not compare to that influencer you see as you scroll or the neighbor down the street, or even what you thought it would be. That is okay. What is important is that you are present and that you enjoy the moments that you have together, that you embrace this time and make it special in your way. Give yourself a bit of that grace that you are so often giving to others.