Wednesday, August 21st, I had an appointment with my Perinatologist, Dr. Brown-Elliot. I was 32 weeks and 5 days pregnant. I brought my friend, Kim, along with me this time! When I got called back, the nurse checked my blood pressure. It was high so I had to do another NST (non stress test) which is where they monitor the baby’s heart and movements and my contractions (if I am having any). Camden’s heart rate was great the whole time, but I started off having contractions every 2-3 minutes apart, then every 6 minutes, then 10 minutes apart and my blood pressure went back down, so they quit monitoring me.
Dr. Brown-Elliot did the ultrasound. Camden looks great today!! He was being a little wiggle worm giving Dr. Brown-Elliot a little bit of a hard time while she was trying to get his measurements. Camden weighs 3 pounds and 10 ounces!! That’s 8 ounces in the past two weeks!! I am so proud of my big boy!
Wednesday morning I was at the bank setting up an account for Camden’s funds. I was explaining to the man, that was helping us, about my situation with Camden and why I am starting the account, so he could figure out the best way to set up an account for Camden. When my Mom and I were explaining to him that Camden doesn’t have any legs at all, only upper arms, no feet, no toes, no hangs, and no fingers, he just like raised his eye brows, didn’t say a word, and just looked down. I have never had a problem talking to anyone about my son, but this bothered me for some reason! Every time I have told someone about my son, they never took their eyes off of mine, and I think that is what made the difference. I sat there. Its not like I could just run off, but I just wanted to hide. I wasn’t embarrassed. I was shocked.
This situation reminded me of a blog post that one of my friends sent me. The lady who writes the blog has a daughter with limb deformities. In this blog post she was talking about how her husband took her daughter to the pool and a little boy asked him if his daughter was ugly, because he just couldn’t understand. I know that my situation was no where near to even coming close to being as hurtful as that, but it still hurt. It has been on my mind all day!!!
I dread the day after my son is born and I have run-ins with rude people or people who just totally cannot understand. That day really scares me. I am terrified. I don’t know how I am going to handle that, if I am going to cry, hurt someone, or just shrug it off because people are just jerks! I really don’t know. Its not like I can just ask someone who is in the same situation as me, because I feel like no words can fully prepare you for that time. This is something that I really need to pray hard about and if anyone can pray for me in this situation I would very much appreciate it!!
Ending on a happy note. I wanted to share something very dear to my heart! My Mom’s Dad, who passed away in 1998, made this cradle for her to use when I was born. I slept in it, my younger brother slept in it, and my two younger sisters slept in it. Now it has been passed down to me, by my Mom, and my sweet Camden will sleep in it! In the cradle you can see a green frog. I gave that frog to my Dad’s Dad, who passed away in 2004, a couple of weeks before he passed. I am so happy that Camden has two things from two very special men that I hold so dearly in my heart. I know that they will both watch over him from heaven. I love you, Pepa and Grandaddy, and I miss you both very much!!
Admirably Diverse 
I had a friend whose daughter has Sturge Weber Syndrome and her son is ADHD. Her daughters face is about 50% deep, deep purple and her gums/teeth are affected too. Karen was so good at handling comments and hurts without upsetting the other person or embarrassing them. She put them at ease about her daughter rather than ignoring the comment or uneasiness/tension it brought on. She addressed it right then and there in the most kind way I have ever seen anyone relate to someone that has hurt them. Always smile and turn it into a positive. She didn't ever worry if it was appropriate to say something on the spot – they created the tension so she responded with kindness, love, and understanding that most people just don't know what to say or how to handle it. She started the Sturge-Weber Foundation in the basement of her home in Aurora, CO with $500 borrowed from her dad, that's when I started working for SWS. She moved into a shared office space and grew bit by bit. Then I quit to care for my kids, and her hubby was transferred out east – she kept the foundation going and it is now Worldwide! Amazing what one momma can do for their child. You remind me a lot of her 🙂 (Check out their website, you'll see how far she has come sturgeweber.org). — Aunt Marsha
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My father in law made this same cradle for my husband before he was born, but at 11 lbs at birth, he never fit! Thankfully we have been able to use it for both of our girls. 🙂
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