Parenting on "Expert"

My husband always jokes with me when things get difficult that "We started parenting on "expert" mode." We are big gamers, so we crack nerd jokes on a regular basis. I definitely agree with this statement. This goes for all parents of FODs, parents with kids with special needs. We are warrior parents, advocating, learning, constantly worrying, teaching others. The list goes on. Its been a rough week in our community. One of our members lost their little girl. My heart breaks for them. This has been the second death in the month and I think about their families a lot. I know it isn't much but I hope it brings the families a little comfort knowing that their child is being thought about often. Most parents can't fathom thinking about losing their child, but it is something FOD parents are thinking about on a regular basis. If we didn't, we would lose our children. We have to constantly be aware that their lives are incredibly fragile. It takes a toll on our mental health. A lot of times I look at my daughter and burst into tears thinking that I may not have her long. It can all go awry, terrible, tragic in a short few hours. However, this also makes us better parents. We are involved, constantly there to support our children. Appreciating every single moment and really being present. We arent the parent sitting on the bench at the park on the iphone. We are the parents watching our child in awe, thanking God that we have made it this far.

I love the community that I have found. I have made friends that have made this journey just a little bit easier. Someone to lean on who really 'gets it' and understands. A few of my friends with FOD kids are going through a really tough time this past week. I ask that you keep them in your thoughts.