Special Needs

You know those clubs you always hear about that you don’t want to join? Well, I am in one. I am in the BA mom’s club - and it’s not the one you are thinking of. Three years ago, I never thought we would be here today, but I am so thankful we are and that I get to tell you my story. Three and a half years ago, I first heard the words Biliary Atresia (BA). I was quickly “initiated” into our group and learned Biliary Atresia is a rare liver disease that affects 1 in every 15,000 children born. The bile ducts are not formed correctly or are narrowed at birth. Some common symptoms are pale stools, dark...

Surely you've seen those articles floating around the internet that you just feel compelled to read. Somehow, this one is going to make your life better, tell you what you can be doing better, or things you should stop doing. One of those articles was shared recently in a Facebook group I'm a member of because of my daughter Salem's Infantile Scoliosis. Along with the post, this other member posed the question, "Have y'all seen this?" It had a title like "12 Deformities that Happen After Birth" and proceeded with suggesting that mothers cause certain deformities by what they do or don't do correctly. I read it immediately, and as I scrolled skimming, I came to number 8 - the curved spine. Apparently, by this...

We've been at this special needs parenting thing for 11 years now. It's intense, scary and overwhelming more days than we will tell you about. It's never ever getting to let your hair down, because somebody in your home is counting on you to do CPR, save their life, or monitor their vitals. Even nurses and doctors get time off, but as the parents, we don't. We sometimes get respite in the form of nurse or personal care attendant. And for the really lucky ones, sometimes a family member will step in and step up to help too. But this isn't an overwhelming majority of special needs households.  So how do you give a break to a parent who really can't...

You Need to Leave  My son’s girlfriend Madeline looked back at me with golf ball emoji eyes as I said, “You need to leave.” Her normal breathing resumed as I explained: you guys should be traveling, living in other places, experiencing different cultures. Not watching Netflix with me. My 19-year-old son Clay was diagnosed with severe Crohn’s disease in the summer of 2016. Crohn’s is an auto-immune disease that puts the immune system at odds with the digestive tract. The disease causes painful and unpleasant side effects which can lead to internal bleeding, cancer and death. Crohn’s affects 1 in 200 people and is being diagnosed in adolescents and young adults at an alarming rate. There is no cure. Research is underwayinto...

My Darling, I know you try. I see your frustration when you are trying and can’t get it right. I know your grades aren’t a perfect reflection of how smart you are. You are so very smart. In fact, your imagination and knowledge about certain subjects astounds me. The facts that you tell me and the wisdom on certain things that you share with me blows my mind. I know you try to sit still, but I know that sitting still is impossible. So I am ok with you wiggling in your chair and running. I know that it makes your mind happy. I know that you want to sit still when we are in certain settings, and I know you...