Bringing Bald Back

So I found a blog that features a rare childhood birth defect every Monday. This blog was started in November of 2011 and guess what the 2nd birth defect to be featured was: the laryngeal cleft! That is probably because a laryngeal cleft affects less than 0.1% of the population. Every entry has a child's story to go with it. I commented on the blog about a sip of heaven so maybe the mom would follow our story and share her experience as well.

Through all of our research, I have never had a conversation with another parent. I have not wanted to. I am the type of person who needs to experience things for themselves. War stories weren't something I was ready for. I did join an online support group when Sloane was 1st diagnosed and every time I read others stories I became more and more upset. It was just too much to take in. I THINK if I knew Sloane was going to be born with a medical need, I would have been more open to information. It took a long time to work through the emotions.  I feel now that I am educated enough and have had enough experience with our cleft to open up a bit. I hope!!

We are officially on lock down. One of my friends has 2 boys. Her entire family of 4 had the stomach bug this week. When I spoke to her, she was quite clear about how horrible it was. She strongly suggested that I stay clear of germs and people as best as I could for Sloane's sake. I agreed as the croup is dwindling away and the intestinal issues have stopped in our home. We did head out briefly today for some java. Let me interject and say that my hubby, father and brother love to joke about how I can never stay home for just one day. I say "why should we?" Anyhow, we stopped at Starbucks this am. First off, I noticed they are open until 10pm. Forget Barnes and Noble next time I need a pseudo mother's den to hide out in...I'm going to Starbucks. While we were waiting for our treats (skinny cafe latte for me and a banana for my little lady), a very together, well dressed man asked, "how old is your son?" Now, lets be clear. Sloane is not adorned in hair ornaments because she can't be! Her hair has just started coming in! We like to say, she brought bald back. Which is completely odd because I have a bouffant on my head and hubby has a head of hair that many of my own family members would die for. Our child will be 4 before she has some serious locks. Back to the man; Sloane had her pink coat on that has sparkles on the hood, a pink eyelet tunic, and white patent leather Ugg mary janes (a gift from the most fashion forward 15 year old I know...thank you!!). Aside from the clothing, I have been told by many people that my daughter has very girly features. Yet, this man didn't know Sloane was a girl. I replied, "she is a girl" and he said, "oh?" with curiosity!!!! Seriously??? What is wrong with people??? As I walked to the car, I thought maybe I should have stayed home today!!!