You are not alone.
There may not be anyone else with the same constellation of symptoms as your child but there are people with similar challenges. Find those people. I have never met anyone with all of these same challenges as my kid but I have a strong network within each separate diagnosis. We have made wonderful friends and have found—and I hope provided—a great deal of support within each of these. I just have to pop onto one of my Facebook groups and I’m immediately reminded, I’m not alone.
You too deserve to be cared for.
We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for. That entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it, you are worth it!
You aren’t perfect—and that’s ok!
No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment, that you were sure was on Tuesday but apparently was on Monday. Maybe your kiddo had a tough day at school and just needed the night off. Who knows? But beating yourself up isn’t going to change the situation, so try to move on.
You are a superhero.
You may not leap buildings in a single bound or run faster than a speeding bullet but you are a superhero none the less. Everyday, you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine. You hold hysterical children during horrendous medical procedures. You deal with tantrums and melt downs. And most often manage not to have a tantrum or melt down yourself. You encourage your child to do things doctors told you they would never do but you never gave up hope. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent.
Therapy is play.
Having sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion. Since then, I have grown, I have learned and I have come to understand. For children, therapy is play and play is therapy. What I mean is that the best therapists find ways to make my son engage in challenging activities that he otherwise would have balked at, by making it a game that he wanted to play. We took a page from their book and did the same at home.
Don’t lose yourself.
Don’t let being the parent of a special needs child create or reshape your identity. We are many things, being the parent to a child with special needs is part of our identity. But it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Find things in your life you enjoy doing, a glass of wine, a hobby, shopping for yourself.
Make time to enjoy your kids
We super parents tend to be fairly busy and often over scheduled. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids. Read to them, snuggle with them, engage with them with what’s important in their worlds. Make memories outside of hospital walls.
You will be obligated to make heart wrenching decisions.
You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Know that you are doing your best, remember number three. I am guilty of agonizing over these types of decisions, they can become really overwhelming to me. Talk about your conundrum with others who get it and trust yourself to make the best decision. Make it move on and once it’s made don’t rethink it. Easier said than done, but worth a try!
You won’t always get it right.
Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won’t always get it right no matter how many sleepless nights you spend agonizing over how to handle a situation.
Yes, you will screw things up sometimes despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.