As our family prepares to start another school year I am excited and trepidatious at the same time. I wonder if this will be one of the “good” school years or one with 15 IEP meetings. I started thinking about our families who have children with significant disabilities and I realize that I really wanted to tell you, as one parent to another, three things I want you to know about yourself.
- You are strong. The mental, physical, and emotional stamina that is involved in caring for another human being who is significantly disabled is breathtaking. To function on tiny amounts of sleep, to handle Medical crises, to swim in a sea of rejection while having to constantly fight for every. little. thing. It takes strength that many will never know. You are so strong.
- You are powerful. I know you might feel helpless sometimes, I sure do. You take all that you deal with and you turn around and make sure your child knows that they are worthy and they are worth fighting for. You open doors that have been tightly locked for years. You change minds. You change hearts. You change entire communities, and then you turn around and teach your child to do those things for themselves. You are so powerful.
- This is the big one. It’s your life too. That may be hard for you to accept. Of course I’m not advising that your dedication to your child be compromised, but this is the only life that you get as well. You’re a human being. I know that might be overwhelming to even think about, because I have been there. You deserve respect, you deserve happiness, you deserve good times, self-care and to live your life. Yours. Yes that it includes everything that comes along with parenting. You deserve to enjoy your child. First and foremost, your child. I can’t emphasize this enough. All the roles we must take on, nurse, advocate, perpetual filler of paperwork, it should all be backseat to your role as parent. The world may devalue our kids, regulate them to the status of client, patient, or even problem, but you are allowed to not view them this way. It’s your child, your family, your life.
So as we go into a new school year, I hope that our kids get what they need, support, love, friendships, healthcare, an education. The reality is that our families face many battles ahead for those things. We can’t wait for the fight to be over before we embrace our lives; what if that day never comes? We have yet another opportunity in front of us, to role model self-care and happiness to our children, regardless of our struggles.