Every child should be raised as if they were destined to be 4 feet tall.

We moved to a new city. No one knows our story. My son is 4.5 years old and in preschool with his twin sister. He has RSS, she does not, but they are both tiny in comparison to their peers. But there are always going to be kids in the class that are the smallest, so at this age, other families don't know Sebastian has RSS. He's doing everything their kids are doing (better than some of their kids ;). To them, he's just small. They don't know what we've gone through. They haven't watched the miraculous transformation from a special needs baby into this amazing monkey on the the monkey bars. But that's fine with me. I'd never hide the fact that he has RSS. I'm so proud of where he was and how far he's come. However, I never want it to be the first thing someone thinks of when they see him, so I don't mention it really. I don't even put it on school applications anymore. I want them to see Sebastian. I recently made a new friend and decided to share our story with her. She had so many questions, asking how I handled such news. I went on to tell her about my process and realized how far I've come. How for the first 6 months I was trying to figure out what was wrong. The waiting was so hard. Then my Dr started mentioning RSS but said we had to wait a while to make any conclusions. Then went to the Geneticist... got the diagnosis and begin the whirlwind of our journey. First you go into shock... Questions race through your head... "Did the dr use the word Dwarf?" "What does that mean?" "Why is my Dr lecturing me on politically correct terminology and teaching me to say "little person" or "person of short stature"? Wait, is my child a dwarf? What does this mean???????" It means Sebastian is expected to be 4'11. Now more questions that I'm sure every mother who receives this news asks... "How will the world treat him?", "How will he feel being so small in a society that considers height a good trait?", "What does primordial mean?", "Did I just read that people with primordial dwarfism have a shorter life expectancy?" (for the record, this does not pertain to RSS...) PANIC. Panic set in. Then I read everything. I was consumed for the first two years. From feeding issues, to failure to thrive, I worried, I weighed him, I visited drs, I prayed to a god I didn't believe in and shielded him from bigger kids. And then, I stopped. I stopped and thought about my role as his mother. Once Sebastian started walking and outgrew his feeding issues. Once he finally started hitting milestones, I threw out the scale. I stopped weighing him. When I weighed him, it always said the same number. It was getting silly! It was my job to raise a happy, confident, proud person... a thriving person (whoever invented the phrase "failure to thrive" is an idiot!). I realized that if I focus on every ounce he gains, every calorie he consumes, I'm doing the very thing that I'm trying to protect him against. I'm giving him the message that it's not ok to be small. And that wasn't ok with me. It is more than ok to be small. Be destined to be who you are meant to be and be proud! So I stopped. I stopped focusing on RSS and started focusing on my son. Meanwhile, my husband put less thought into this and went straight into action. When we went to the playground, he forced Sebastian to go as high as possible on the jungle gym, pushed him on the big kid swing well before he was ready, and NEVER treated him as though he couldn't accomplish something. He always pushed Sebastian and his twin sister equally... out of their comfort zone so they would never be afraid to try and never let anything stand in their way. We balanced each other out. I was the over protective mama bear, and my husband taught me to sit back and let them be. Let them fall down. Let them get knocked over. They will get up. And they will be stronger for it. Now I have three kids. I raise them all if they are destined to be 4'11. If it's not height, it will be something else. It doesn't matter what our difference is. We all will have obstacles in life (who knows, maybe being small won't matter to them and we are worrying for nothing). It's about how we approach them. It's about how we perceive ourselves. And how we believe in ourselves... It's about teaching your child to love themselves for all their strengths and all their weaknesses. So for all the mom's out there that are getting this diagnosis. It's ok to panic. Getting any kind of diagnosis takes time to process. But as my best friend reminded me, the best gifts come in the smallest packages. And my husband is excited for my son to be old enough to date as he can't wait to tell him to tell the girls that we are all the same height horizontally. ;)