As any mother does for her children, I’m always there for them, or at least I try hard to be. There is no manual that assures me I’m doing a good job, but I listen to my heart and trust my gut. Tuning in to these two organs is a weird but necessary combination when it comes to a role that has no reference, because it’s true. Regardless of their condition or diagnosis, every child is unique and your children will need you forever.
My son just turned 13 years old and I’m completely overwhelmed by the fact that he is now a teenager. It’s like a mid-time crisis in the life of a mother of a child with special needs, because this is the time in which you sit for long hours just to think about the things you think you’ve done right and the others you may have done wrong. Many, “what if?” questions arise all the time. And many, “keep focusing on the present to build his future,” come to calm the anxiety of not knowing what to expect moving forward.
Yes, many times I can’t help myself from being deeply concerned about his future. Not only is he growing up, but I’m also aging along with him and his sister. Sometimes I feel as though time is running too fast to catch up with the interminable list of things I would like us to achieve before they turn 18 years old and become adults. Sometimes I feel that for the last thirteen years I have lived for filling up the most obvious blanks by leaving so many blanks ignored or passed over. For so many years, I became one of those secondary blanks that didn’t require immediate attention, and throughout the years I have learned that to help them fill up their blanks, I have to feel complete myself.
And the thing is that when you raise children with a significant disability, for many years or maybe for a lifetime, you must put yourself in second place because there is no time, there is no logic, and the “having it all” theory doesn’t apply. Every minute counts, and every decision takes you to the next step, for them. It simply can’t be about you anymore.
Many times you are doing the job on your own because if you don’t, your child may never be able to complete those regular and natural stages without added support. And there you are, always filling the blanks. Always looking for ways to connect the dots as you discover ways to find the self-motivation on the path. To learn to enjoy the ride, even though the ride might include nonsensical fights with the world around you. It’s worth it every tear but it will never be an easy job. And it’s never about you at all.
I have to say that I have been filling up the blanks for thirteen years already, and my biggest prize is to watch how some of them are already connected and working just fine without my constant supervision and support. Emir is independent, he is bright, he is emotionally smart and I know he will be alright. Ayelén keeps maturing, growing up, and in the last year, she has gained so many independent skills. I’m glad for that.
At the end, I guess it’s all about perception because not everything needs to be connected or perfectly coordinated to work well.
To the parents crossing similar stages and evaluating their roles as they daily dedicate their lives to filling up the blanks for their children:
Hang in there, take care of yourself, don’t give up on love
Trust there that even though there is never a perfect time, there are plenty of ideal moments in which you feel blessed and proud of yourself for fulfilling the obligations and expectations of this amazing job.