I wanted to do something different with this month’s Focus article and interview one of the mothers in the RE program. We’ve been talking about disabilities in Children’s Chapel and working on how the 7 Principles guides us to interact with our disabilities and other people’s. I asked Sarah Erdman if she would share her experience with us, having a daughter with a rare genetic disease. I hope this is the first of many interviews and we can weave our stories together as we build our beloved community.
What is Jocelyn’s diagnosis and how did you find out?
Jocelyn was genetically diagnosed with variant Cryopyrin Associated Periodic Syndromes (Atypical CAPS) in August of 2013. We had a misdiagnosis for years so it was a relief to find out what was actually going on and get her on the medication she needed. There were 6 (Jocelyn makes 7,) people with Jocelyn’s variant that the National Institute of Health is aware of. I know 5 of the other 6 families now and half of them also have Autism Spectrum Disorder (ASD). We had tossed around the idea to get Jocelyn tested since she was about 6 months old but decided now was the time to do it. In October of 2013 she was diagnosed with Mild ASD and Developmental Coordination Disorder. I think we always knew so this diagnosis was also just a relief. I wish we had done it sooner because the therapies she now receives have made a huge difference in all of our lives.
What’s a typical day like, if there is one?
Our typical days are much like any other family with children, I would imagine. The only difference probably is that we are talking about pain daily, make decisions together about if pain relieving medication is needed, I am probably in contact with her school more than most parents, and we go to A LOT of doctor appointments. Monday-Thursday nights are full with therapies and homework, which makes it hard to just let her be a child.
What do you wish people knew about your family’s situation? What are the things people say to be helpful that actually aren’t?
We are still happy! Sure there are days when things just seem too overwhelming to handle but we always make it through.
People almost always say comforting things to us but when things are said that are not comforting at all we just try and remember what their intentions were and just realize they used the wrong words to express their intentions. Some things that are more hurtful than helpful for me personally are things like:
1. God doesn’t give you more than you can handle/God will take care of you/Leave it in God’s hands
2. I don’t know how you do it/I couldn’t do it
3. She looks fine to me
Helpful things to say are more along the lines of:
1. What can I do to help/can I take a kid for an hour/You want some wine?
2. I’m here for you if you need to talk
3. Invitations to both children’s play dates and mommy dates are always welcome
4. HUGS!!! I’m a hugger so if you don’t know what to say I will always take a hug.
How do you take care of yourself and what advice do you have for families dealing with illness and children?
To take care of myself I try and take some time for just myself whether it be wondering through a bookstore for and hour or locking the door and taking an uninterrupted bath. I think sometimes there is guilt associated with needing time away from your children but I have found for me this is the best way to recharge my battery and then I am able to come back and be a better parent.
What are Jocelyn and Sophia’s favorite songs?
Jocelyn loves Katy Perry’s Roar and Sophia enjoys nothing more than Itsy Bitsy Spider with lots of tickling incorporated.