I have lived through different stages in my attempt to give my two children with Down syndrome the best possible life. The initial stage was filled with melancholy and a great need to demonstrate that their lives were not a mistake but a message from God. The whole story about being chosen, raising angels, and more, helped me overcome my fears and challenges at the very beginning of their lives. Then I started growing up along with them and realized idealization is not synonymous with equality. What’s more, sadly, it is often accompanied by segregation and low expectations.
With our choices as parents, we create a template for our children’s future. Just think about it.
Then came the second stage: the day you wake up to realize the world is not always a happy place. Prejudice is real and is not always obvious. Sometimes it hides behind tears and condescending comments. Sometimes it hits hard when it is delivered unexpectedly while some other times, it’s confusing and discouraging. Regardless, it often makes you doubt yourself and your kids as it pushes you to believe that as a parent, you are wrong, you are too emotional, or you are living in denial for wanting the best for your child.
Many parents choose to remain silent thinking the fight is not worth it; however, if we don’t talk, if we don’t educate, if we don’t demand for equality, who is going to do it for us and for our children?
The third stage was the transition to real knowledge – the beginning of everything, really. This brought the excitement of recognizing the ability to make a difference, to provoke change, and to transform the future of my children thanks to education and understanding of the law. At this stage, I experienced for the first time the pride and satisfaction that only the feeling of a real fight can offer. The empowerment felt with an equal confrontation. I learned to talk, I learned to think, I learned to believe, and I learned to translate my vision into great realities that I once thought impossible. The struggle never gets smaller, but the passion is limitless. Many times I hear parents saying the laws don’t work for them. When I ask them what their understanding of the laws is, they have never read them. I know. It is not easy, it is overwhelming, and things should be easier, but they are not; therefore, we need to read, study, and understand the law before giving up on its power to serve us and our families.
Currently, I am living in the fourth stage. Still nothing is perfect, and still nothing is easier. The fights are harder, the gaps are larger, and the needs are bigger. The only difference is that I am not the same. I believe in myself, in my kids and in the system. I don’t settle for less, and I expect everyone to do their best, simply because my children deserve it. I’ve stopped trying to demonstrate their worth because that should not be part of the discussion. They don’t need to prove their worth to get the prize. To me, they are the prize.
And now that I am going through this new stage of deeper and more conscious acceptance, I can say it loud: My children will always have a disability and that is okay.
I mean, I will never stop giving them the best possible opportunities. I will never stop believing in and loving them with all my heart. I will never settle for less when it comes to their futures and their possibilities, but something that I will never do either is to mask their needs. I will never pretend that we have all the answers or that our lives are easy or somehow perfect. I don’t want people to believe that we have gained something because there is nothing to gain, but to demand.
My children will always have a disability and that is okay. Some days they will act in ways that I cannot understand not only because of their disability but because of their humanity. Sometimes they will struggle with their ability to communicate. They will face challenges and I know this as it has happened over the years, sometimes I will be strong and assertive while other times I will feel helpless and lost.
The only difference between the first stages and this one is that now I understand and accept that there are things that will always be out of my control despite my efforts, and this is just fine. They will always have disabilities and the goal is not to fix them to fit or make them be “typical” to gain a space in the “real world.” The real goal should be to normalize disability so every parent can say it loud and with no shame, “My kids will always have a disability and that is okay.” In my opinion, this is the beginning of everything; even though, we all need to walk our own path and stumble across our own rocks to learn it.