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. ;)

I'm full term... two weeks to go!

Just got back from the dr. I cried the whole way home. Yep, I'm already sleep deprived with pregnancy insomnia and hormonal, so that probably had an impact on me. But I cried because the dr told me that I'd have a normal c-section and that I'd be holding my baby girl immediately after she is born... in my arms. Those words triggered something in me that just made me cry. I didn't have that with Dani and Sebastian. I didn't even get to meet them for 24 hours. I always say that I wouldn't change that experience for the world because looking back at the silver lining, it was such a precious time for me. No matter the trauma, 6 weeks in the NICU taught me so much about the value of family, life and the two gifts we have that have made us complete. I accepted that I missed that Gerber moment. I accepted that this was our birth story and wasn't meant to be like everyone else's. But to be able to have a second chance, to have a healthy child that I can welcome into my arms... it's emotional for me. It makes me sad that I didn't get that with Dani and Sebas. But it makes me cry with joy that I can look forward to that. I can't believe I am bringing another little life into this world. It is just to big to comprehend. And I can't fantasize and dream about her like I did with D&S because I know too much. I know that whatever I picture will be totally different than who she really is. I know what to expect and that it's not that romantic fantasy you have with your first, but at the same time, I know how much love I will have for her that I could have never have even dreamed about in my first pregnancy. 2 weeks to go. Getting ready, getting emotional and just waiting to hold this precious little girl in my arms. Zoe... see you real soon! xo

Am I ready for #3?

The answer is yes. When I found out I was pregnant again I had mixed feelings. I felt shocked, scared, amazed that my body was capable of getting pregnant the old fashioned way and nervous. Now, I'm just relaxed and happy. I have 7 weeks to go. I'm ready to have a bigger family. Am I ready to take care of a new born again? Is anyone? Twins and a new born does sound a bit daunting, but when I hear Daniela and Sebastian talk about their new sister, I get excited. I can't wait to see them as older siblings. They are going to be such an incredible influence on this new little life. I already think we have the greatest family in the world. I can only imagine how incredible it will be with another child. One more to love. One more to watch grow and achieve new things. One more to add happiness to our already full lives. So, to my newest daughter who I will meet in the next two months, while you were a total surprise and shock to my system, I'm am so happy to bring you into this world. I am so excited to smother you with love as I do with your brother and sister. And I can't wait to see the relationship you develop with your siblings as you grow. Take your time, don't come too soon as Daniela and Sebastian did. I want to hold you when you are born. ;) I love you already. Your mama

We love in the moment

I just went in and looked at my babies while they slept. I couldn't get over how much I loved them. I loved them right there, at their current size, looking like little angels. They have changed so much in the last 6 months. I could never imagine loving them as much when they were bigger babies. 6 months ago, I loved these two tiny little people who were just brand new. Now I love these two babies that are so different than the people they were just 6 months ago, or even 3 months ago for that moment. It's amazing how through life we become a different person through all of our different stages. I just looked at a picture of my grandmother. I have a picture of her when she was a young woman next to a picture of her when she was an elderly woman. The women looked so different, yet they were the same person. It's amazing how we grow and change through life. And it's amazing how very different we become, but how some things in life, like the love of a mother for her child will always be constant.

Paying it forward

It's been 2.5 years since the twins were born. What a ride it's been. We've gotten through the hard part, however I'm not sure which is more difficult, finding out your child has a rare growth disorder or potty training! All jokes aside, both Daniela and Sebastian are doing amazingly well considering the start they had. They are still tiny, but thriving, so for all the doctors that use phrases like "failure to thrive", you should really consider changing your terminology for future parents! Dr Kline called me yesterday and mentioned that he had a new patient that was 3 months old with RSS. He asked me if I would be comfortable calling her mother who was dealing with the emotions of discovering the diagnosis and dealing with all the feeding issues. Finally I was able to use my crazy experience to be there for someone else, something I wish I had during that first year. I spoke with the woman today. I heard her voice quiver as she was obviously holding back the tears and it brought me back to the time when I called Dr Kline daily, begging for a feeding tube. I remember sitting in Giggles and Hugs covered in vomit after feeding Sebastian in public with the hopes that all would be ok. I remember making my nanny write down every ounce he consumed as well as every ounce he disregarded post meals. We went to more drs and appointments than I could count and we were just trying to figure out what the cause of all of our issues was. I remember crying and feeling nauseous myself from the stress of feeling that my child wasn't getting basic nutrition. I never had to think of the importance of food. And feeding issues are definitely the most stressful issues you can have with a child. Not knowing was the hardest. I didn't know how he'd be developmentally. Would he crawl? Would he walk? Would he talk? Little did I know he'd be so vocal he's like a little parrot and sometimes we wish he'd tone it down a bit! Little did I know he'd be climbing, jumping, and running (well, it's a bit of a waddle, but I'll call it running!). And whoever said that all kids with RSS would have learning disabilities are wrong. He's a genius. Maybe there were some kids that just weren't as bright and their parents blamed it on RSS. Just kidding... but seriously, Sebastian is pretty cognitively advanced... bi-lingual and counting to 20 in both Spanish and English. So, this mom reminds me of how lucky we are. What we went through was scary, stressful and heart wrenching. But I wouldn't change it for the world. Because now I look at my children, both of them and I am beyond grateful. Grateful for every meal they eat, totally fine when they skip a meal, and I have patience that my mother never had... everything comes in good time. Now I sit here 29 weeks pregnant with a baby girl. I'm 1 week less pregnant than when D&S were born. I know what this baby looks like. She is a real person now... just needs a bit of time to grow. I can't wait to see D & S as older siblings. I can't wait for them to look after her and protect her. And I can't wait to introduce this new baby to our amazing little unit we have. As for the c-section, I'd love to pass on that, but she has to come into the world somehow so I'll just focus on getting it over with. That was the worst experience I've had! Ugh, I don't want to go through that again. But it's worth it. So, here's to my two defiant little toddlers... doing everything they are supposed to be doing. Saying no anytime I ask them to do anything, crying when they don't get their way, wanting to do everything on their own even if it means taking 30 min longer than usual. And I'll take it! I love it. They are also cuddlers, little loves and the sweetest people in the world. Here is to silver linings, overcoming obstacles and always using your experiences in a positive way. And to any mom's out there dealing with difficult situations, you are not alone.

Kiss Goodnight

We have a book called Kiss Goodnight. It's about a mama bear putting her bear cub to bed and she forgets to give him a kiss goodnight. Tonight I put the twins down. I closed the door. Dani yelled, "Mommy!" I went back in and she reached out, puckered and gave me a kiss goodnight. Then she lied down to go to sleep. My heart melted 10x over!

You have to be your child's advocate.

No one will ever care about your kids like you will. When Dani and Sebastian were born, they were automatically put enrolled in the Westside Regional Center program. This program evaluates kids with special circumstances and follows their progress. They are government funded and help pay for special services. Since our state is broke, they have cut many services which is a pity for my children. My sisters kids who spent 10 days in the NICU all had physical and speech therapy completely paid for. My kids were born at a time when the economy is a mess, and now I have to fight for everything for my kids, especially Sebastian.

Sebastian has low muscle tone, which means he has difficulty with many gross and fine motor skills. His cognitive skills were delayed due to his motor skills being delayed. Thankfully now that he's catching up physically all the cognitive skills are taking off. He needed Physical, Occupational and Infant Stimulation Therapy, no question about it. It was also recommended to us by Dr. Kotton a specialist at Cedar's Sinai as well as Dr Kline that Sebastian go to an early intervention center with a clinical setting. They have a great program at UCLA which consists of a staff of Occupational and Physical therapists. Every child is unique and has their own special circumstances when it comes to development. And then they also have peer models that attend the program so that the kids that are behind are able to learn from their peers. The ideal situation would be to have both of my kids in this program. My biggest concern for Sebastian is getting hurt. Whenever there are stronger/bigger kids around him, it is a dangerous situation. Kids are agressive. They like to climb and aren't aware of space. He gets knocked around a lot and with his low muscle tone, he falls often. This program would allow him to be with many other kids, but have tons of adult supervision and support to provide a safe environment which would allow him to transition into a normal preschool. And Daniela would benefit by just being there, learning and interacting with other kids. She already does benefit from Sebastian's Infant Stimulation Therapist. I also want them to be with each other as well as be around other people with various differences so they always learn to respect all kinds of people no matter what their disability or circumstance is.

Despite dr recommendations, We got denied funding for this program. Erin Fox, the lawyer that represents WSRC said, "We just can't find justification for Sebastian to go to this program." I was livid! "You can't find justification? You have a whole report from the early childhood development evaluation therapist from Cedar's Sinai. Have you read it? Can I get a lawyer to help me argue this?" I responded. "I have a ton of justification."
1. A top specialist and our pediatrician recommended it
She explained that doctors recommend that all children go to these programs so they need more justification.
2. My son has a diagnosed rare growth condition called RSS, which means that while his peers are typically 25lbs, he is only 18lbs.
She said, "I don't deny that your son has serious medical issues."
3. My son has hypertonia which means he has weak muscle tone and can't go to regular children's gyms without being put in a dangerous situation
She listened.
4. Cognitive development is directly linked to physical development and he got a late start in comparison to his peers.
She listened.
5. He needs physical therapy and occupational therapy. A clinic based program is recommend and there are NONE near my house.
She listened and said, "This could be the stance that you take that gets this turned. It is recommended that he goes to a clinic and if there isn't a clinic near your home..."

I went on and on. I told her that I felt that they had budgets that they had to meet and that my son was getting pushed out of the system. She told me that because his verbal skills were ok, he wasn't eligible. I was stunned. I asked her if she had ever been to the UCLA Early Intervention program. I explained that when I toured it, they explained to me that they focus on all development, fine & gross motor as well as cognitive. What about the rest of him. What about giving him a good foundation so when he does go to school, he has the same head start as everyone else? I fought hard for Erin to get WSRC to change their stance. She called me back that day and told me she thinks she can get him in.

Moral of the story. Fight for the ones you love. You have to advocate for your family. No one will ever care like you will. Now, we need to work on getting Dani in. I'll have to pay for her, but it's worth it. It's now just a matter of space.