How I Manage

“I could never do what you do.” “How do you manage?” 

Yes, having a severely disabled child has its challenges, but they are your child and you love and do everything possible to help your children. His needs are just different.

My life may be more difficult than others’ in some ways… weekly specialist appointments and multiple therapies, fighting for services, insurance coverage, and resources, spoon feeding my three-year-old all of his meals and holding a cup to his lips for every sip, and having to helplessly watch my child suffer from seizures daily. Bennett’s communication is very minimal and only his father and I truly understand his sounds enough to know his needs, but even then we are left guessing, and I’m always feeling like I’m not doing enough for him if I’m not engaging him in some kind of therapy all day long, every day of his life.

However, my life is also simpler than others’ may be who have two children, ages 3 and 5. Bennett can and will nap anywhere at any time! He loves to sit in his stroller and go shopping. He is the calmest, sweetest child and rarely cries, unless he is seriously in pain. He loves to just cuddle on the couch with me and watch my favorite shows. He lets me dress him in anything I want…he doesn’t complain about the bunny ears at Easter, or the Santa hat at Christmas time! He’ll eat anything I puree for him without complaint. His giggles and smiles are rare, but oh so amazing when they come. EVERY SINGLE thing he does is amazing to me… from standing with support for 2 more seconds than last time, to keeping his head up when in sitting position, opening his hand when I say, “Put your hands out” and using his button switch by hitting it with his head to turn on his favorite toy. Every intentional action and communication is a reason to be joyful and celebrate.

My son teaches me to treasure every day that he wakes up, because I know tomorrow is not promised, even more so than other children. He is at risk for SUDEP (Sudden Unexplained Death by Epilepsy), aspiration pneumonia, breathing issues, and many other comorbidities. I also love him for him, unconditionally. He doesn’t have to say or do anything to make me proud.

Some may look at him and feel pity, or pray that he’s magically healed, or think what a burden he is on society’s tax money used to pay for his therapies, wheelchair, and medical expenses. Of course, I wish he didn’t have to suffer from seizures, could eat solid food, and communicate his needs, but that doesn’t mean I wish he was a different person. He wouldn’t be Bennett if he were born in a typically functioning body. He wouldn’t be my sweet and forever innocent boy.

I love him just the way he is. He is perfect in my eyes. This is how I have the strength to do what I do. This is how I manage.