One of the things that has made a huge difference for Dave and I when it comes to coping with Elsie’s diagnosis is the overwhelming support that we’ve received from our friends and family. After being told that Elsie had Cystinosis we were a little hesitant to talk to anyone about it. She wasn’t yet confirmed to have Cystinosis and we didn’t want to worry anyone for no reason. But I think the main reason was actually because it made it real. That bright, smiling, beautiful little girl in front of us couldn’t possibly be sick. Our hearts were broken and the thought of talking with anyone about that seemed unbearable. But we knew that at least our parents would need to know what was going on so we made them our first priority.
And the funny thing is after talking with them about it we actually felt better not worse. Even though we felt horrible having to tell them the news and break their hearts too it really did feel like a weight was lifted. To know that they will always be there to support us and Elsie is just a great feeling to have. After telling our parents we knew it was time to let the rest of our friends and family know. Although it wasn’t entirely personal I sent out a mass email letting everyone know what was going on. It was a hard balance between telling them the facts but also letting them know that everything was okay. It was important for us to reassure them that Elsie was still a very happy little girl and attaching some pictures so they could see for themselves really helped. When it’s just the cold hard facts Cystinosis can sound really scary and I didn’t want anyone to feel that way.
I have to say the outpouring of kind words, love and support has just been awesome. It’s still amazing to me that aunts and uncles all over the world who have never even met Elsie can love her and be willing to offer so much help. It really is heartwarming and makes us feel so lucky to have such great people in our lives.
I realize that everyone may not be as fortunate as we are but I think it’s really important to find that support somewhere. Luckily we live in the digital age where there’s a place for anyone dealing with an issue, rare or common, to find others that have been through the same thing. I’ve joined two support groups on Facebook and their response has been unbelievable. People I’ve never met are sending messages to let me know they’re here to help, give me tips and pass on words of encouragement! Cystinosis is such a rare disease but in these groups every member is affected by it in one way or another and have some great words of wisdom that help make it easier for us. The two groups I would highly recommend are:
And I should also mention the amazing care we’ve received from BC Children’s Hospital Renal Clinic. On Monday’s they have this great clinic where there are Nephrologists, dietitians, social workers, nurses and pharmacists that all check in on us to see how we’re doing and are available for any questions that we might have. Every single person we’ve met has left us their card so that we can contact them whenever a question comes up and it’s really great to know that they’re available and that Elsie is getting taken care of by great people.
Now instead of feeling lost and alone we feel as if there are tons of people to go to and we know that no matter what happens we are being well looked after.
2 thoughts on “Finding Support”
I wanted to say a little hello! I am 30 years old and living with cystinosis myself. I’m doing wonderful, owning two small businesses and juggling life with our miracle daughter. It is an interesting ride, but a beautiful one filled with light and love!
I’m here if you have any questions!
Hi Tahnie thanks so much! Your story is so amazing and your blog so positive I love it! I’m going to add it to my resources page right now 🙂