My husband Ralph and I are parents to four beautiful little girls. We were both raised in the CR church, and we belong to a very caring CR community in the Niagara area.
Our daughters, Emily (9 yrs) and Sophia (7 yrs) are maturing and growing like most girls their age. Our daughters Rachel (4 yrs) and Janneke (23 months) are following a unique course of development and growth — often referred to as global developmental delay. There is no name for our two younger girls' condition, but they are similar to each other.
They are exclusively g-tube-fed, dependent on assistance with moving and transfers. They do not walk, talk, or roll over from front to back or back to front. They can sit unassisted for a short time, and they smile. Alot. They bring joy to others immediately.
We attend church when we can, but we often take turns going with the two older girls. Our church is ready to help us, but our girls are often ill, and our vehicle is getting tired of two wheelchair strollers, six people, and necessary equipment being crammed in however they might fit.
My email is regarding the development of parent support through the CRC Disability Concerns website. Has there ever been any discussion about forming an online parent group — either as a separate link or part of the blog? I would love to see this idea develop. It is more obvious than ever the importance of developing a virtual community for parents like us. In our immediate community, there is a children's treatment centre, and there is the promise of parent support from our church, friends, and family.
Yet, we would love to experience and share with other CRC parents of children with special needs in Canada/US. Maybe there's another family out there like us -with two kids that have no known diagnosis. We don't fit into the Autism or Down Syndrome groups; we are part of a misfits club. Certainly, we are connecting with and deeply appreciate our local community of many faiths and backgrounds, but we miss connecting with others who share a similar faith story.
Much of what we read with the DC material seems to focus on enhancing or developing ministry in church for adults or older children with special needs. I understand that focus. I have been involved with Friendship Ministry in the past — before my children were born — and the need remains for our corporate church to embrace all members (visible and invisible disabilities) beyond Friendship Club.
Yet, I am looking to develop a resource or virtual community for CRC parents to connect and share their concerns, joys, questions with raising special needs children —including but not solely focused on church/worship matters. How do you make it through your day? How do you respond when someone tells you that God will not give you more than you can handle?
What is your story?
spot - (aka Sara Pot)