There are a few things we want you to know:
1: We want you to know, there is no cure. Not all the therapy, medication, doctors, sweat, love and tears will cure them. However, we do want them to have the best possible outcome
2: We want you to know, it has permanently changed our families dynamics – we are no longer the same family. We struggle at times but we have seen God work in amazing ways. Our lives are forever changed as a result of this.
3: We want you to know that if they manage to briefly hold it together when we see you, that doesn’t mean that they are “fine” or that we exaggerate it’s difficultly.
4: We want you to know, that when you see them having a tantrum, please don’t judge them. Please don’t tell us we haven’t ‘taught them manners’. Their disability leaves them with little control over their emotions. Trust me, we don’t enjoy the tantrum and neither do they.
5: We want you to know that we grieve. We grieve out of sadness that they can’t live the life we had hoped they could
6: We want you to know, at times we feel isolated. Other families can see and tell us of their child’s improvement but there are times that we can’t tell you what our child has improved on because they haven’t improved.
7: We want you to know, we worry… A LOT. We worry about things like, ‘What will happen when we die?’, ‘What will we do for schooling?’, ‘What if there is no improvement?’, ‘What if they get bullied?’
8: We want you to know, we love them. They are a great joy to our lives. They are part of our family and we are so thankful for them.
9: But most of all, we want you to know of our great God. We want you to know that he loves them and he loves us. By his grace, he will continue to help us care for our disabled boy. We want you to find the same comfort and hope in Jesus that we have found.