Raising a child with special needs is hard. It's exhausting some days. It takes you to a place of extreme sadness and extreme happiness. It makes you question everything that you once thought you knew about raising children. But if I had the choice to go back to the day when I found out that I was pregnant with Sophia, and know then everything that I know now, would I do it all over again? Absolutely.
That is what all my blogging and trying to raise awareness about Down syndrome is really about. I never want to give people the wrong impression about our life and journey with a child with special needs. It comes with struggles and challenges that families without children with special needs usually don't face. But I don't want your pity. I don't want you to feel sorry for us or my child. I just want you to know that even though there are more struggles and challenges and roadblocks to overcome, it is all worth it. I would do it all over again, because my child with Down syndrome, IS worth it.
I am constantly writing about how Sophia is more alike than different, and I do believe that. But the truth is, she is different from a lot of her "typically" developing peers. Yes, she loves to be around kids and to play and interact. She wants to be included and accepted and feel wanted by the people around her. She cries and gets her feelings hurt when people aren't nice to her. She is curious and wants to explore her surroundings and wants to learn new things. She is discovering her independence and wants to express herself without feeling controlled by others. She is a "typical" kid in all those respects. But at four years old, she struggles with speech and communication and getting her point across to others. She struggles with fine motor activities like coloring or drawing a picture, using scissors or writing her name. She struggles with staying on task and focusing long enough to learn age appropriate material. She struggles with personal space and appropriate play with others. She struggles with most kinds of personal care, like dressing herself and toileting. She has a lot of challenges to overcome that a lot of her "typical" peers have already conqured. But the real truth about that is, she will overcome all of those challenges, just in her own time.
I also talk a lot about how Sophia has changed my life. How she has made me into a better person. She has opened my eyes to a whole other world that I was closed off from all my life. She has made me realize that all individuals want the same thing in life, acceptance. Everyone wants to be respected and to feel like they are a part of the their community in which they live in. She has made me understand that being different is okay. That you don't have to be the fastest or the smartest or the prettiest person in order to be valuable. We all have unique strengths and weaknesses, and it's important to help people display their strengths, especially when everyone else around them can only see their weaknesses. But Sophia has also changed my life in other ways too. Because of Sophia, I am more aware of sick babies being born every day and of the ones who desperately have to fight to stay here. I am aware of countless trips to hospitals and doctors offices that so many families have to make day in and day out because their child is at a higher risk for health issues. I am aware that some children don't just meet their milestones at age appropriate times, but need therapists, and dedicated parents, to teach them how to meet their milestones, which can be a lifelong journey in itself. I am aware of the financial hardships that families have to face in order to give their child the best care possible. I am aware of all the extra paperwork and hoops that you have to jump through, throughout your child's entire life, just to make sure that they aren't being cheated of something that they deserve.
Being a parent is hard, hard work. No one ever said that raising kids was going to be easy. As parents we are all faced with our own set of unique challenges in making sure our kids grow up to be the best adults that they can be. Sophia will most likely never be a doctor or a lawyer, but she may just be that person out in your community that turns your day around every time you see her, no matter what she is doing. And the world DOES need people like that. I know that in my heart, no matter what Sophia grows up to be, she will make a difference in the lives around her. And I am happy knowing that.
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