I tucked my 16 year old son in bed before the sun went down. He started saying “night night” around 6 pm. I laid down with him and he asked for hugs as I sang him to sleep. It all seems so normal to me. I still sing him the same songs I sang to him as an infant. He still hands me the same Elmo book to read before he settles under the covers to sleep.
Sometimes I forget that this is not normal. A 16 year old teenager crawling around the house like a 9 month old. An almost grown man needing his mom or dad to lay down with him to fall asleep. A basket full of toddler toys. A bookshelf filled with board books. A drawer filled with adult size diapers. It’s as if we are frozen in time while our bodies are constantly reminding us that we are not.
I’m approaching 50. Many of my mom friends are experiencing the emotions of an empty nest. They are letting go, breathing a sigh of relief and shedding tears over sending their children out into the world to be adults. Being a mother last a lifetime but this leg of their journey is over. It will never be over for me. I am still the mother of an infant, only my infant is 16 years old, 100 pounds and has a shadow above his lip as a constant reminder that time is not waiting for us.
To me, the scariest part of having a child with profound needs is preparing for his life after his dad and I are gone. Even during the happiest moments, the fear of his future looms. Nothing shatters my heart like the thought of my son not being loved by those who are caring for him when we are no longer around. Who will love this grown man of mine enough to lie next to him and sing him lullabies as he goes to sleep? Who will put their hand in front of his, allowing him to hit them instead of himself when the chaos in his brain takes over? Who will understand that his dangerous behaviors are a cry for help? Who will hug him and love him enough to bath him and make sure he doesn't get soap in his eyes, read his Bob the Builder book at 3 am when his body can’t relax, sing the Barney song while helping him brush his teeth and cradle him in their lap like a giant newborn to let him know that everything is going to be ok?
A mother’s love is a superpower. It’s what gives me the strength to keep going. It allows me to stay up night after sleepless night when my son's brain can’t find peace or the muscle spasms in his legs are causing him excruciating pain. It pushes me to the ends of the earth to find doctors who can help him feel better. It gives me the endurance to wake up day after day at 5 am and put my own wants and needs aside to dress him, bath him, feed him, lift him, walk for him, talk for him and protect him until it’s time to lay down next to him for another lullaby and sleep. A mother’s love empowers me to sacrifice anything and everything to be there for him and make sure he knows he is loved but I can’t expect anyone else to do that. And that’s what breaks my heart.
I have learned that caring for a person with profound needs requires love. It requires patience, sacrifice, kindness, strength and empathy; all of which equal love. I have also learned that the unconditional love you get in return is a gift like no other. I know that nothing on earth can replace a mother’s love, but while I am here I know I must do all I can to let the world know about people like my son, people who can't speak for themselves and need the constant love and care of others to help them navigate life. Our politicians, care systems and society need to know about these special people who seem to get overlooked. I will share our strange, difficult, fulfilling, exhausting, beautiful life with anyone who will listen with the hope that it will spread the awareness and compassion that my son and so many others will need when their families are no longer able to care for them. They may not have a mother's love forever but they deserve to be cared for in a loving way for their entire lives. We as humans owe that to each other. As the mother of an amazing boy who has profound autism, developmental delay and cerebral palsy these are my fears, my hopes and my prayers.