When your child is medically fragile or medically complex, your old life really doesn’t exist any longer. But your new life screams for your attention. And you aren’t likely to have shrugged off any of the stressors from your old life; you still are likely to have a partner, other kids, a home, maybe a job, and an extended family.
What can you do to cope?
Hint: You don’t have to re-invent the wheel. And you aren’t alone in this either.
- Get help. As much as you can. This could take the form of actual, boots-on-the-ground help, like nannies and cleaning people. Nurses and therapists. You need help to do this stuff. Your family may be able to pitch in, but make it clear how consistently they need to be helping in order for it to count. I am not being mean or rude. They don’t know your life. They also don’t know how devastating their decision to take off to the beach will be for your own plans. Your day (or week) could come crashing down on you, just because they want to see the sun and sand. This is real life for people with medically challenged kids. It is not always evident to anyone else. Even your child’s therapists, so make sure they know that repeatedly changing their schedule makes your life a lot harder.
- Get support. This could be live counseling, online support, a shoulder to cry on, and spiritual support from your church, mosque, or synagogue. Or anywhere else. Sometimes the moms at pickup are the amazing support system you really need.
- Express your appreciation for your child’s individuality. This sounds like your child needs to be older in order for it to matter. You would be wrong. Non-verbal communication and comments that have nothing to do with gains in mobility or any other related skill have value. Making it clear that someone’s sense of humor or their smile enchants you doesn’t require words. This is good for them. It is also good for you. They are wonderful because they are your kid. Forgetting their essential essence is easy when there are tubes, injections, wheelchairs and appointments in the way. Remember why they are so amazing.
- Use boundaries and limits with your child. This isn’t to help them feel “normal”, although having to follow the same rules as everyone else will help. It is to help them regulate their emotions. Living without routines and boundaries creates a chaotic life, where anything could go, and nothing matters. This is emotionally unhealthy. Being rigid will never work, but making it clear that there are consequences to aggression and other actions is important in ways you may not realize. Kids may be initially upset, but part of them will be more regulated. I will promise you this helps.
- Model confidence in treatments and providers, as long as you can do it convincingly. Your child needs to know that you have their back, and that their providers are good people (mostly). This means that if you have real issues with a provider, even if they are the world’s expert on “X”, you might need someone else if they will interact with you and your child regularly. Continuing to have negative interactions will erode your child’s faith in you and in healthcare. This isn’t nothing. This, quite frankly, might continue for the rest of their life. I know that sounds pretty dramatic. Talk to people in their 20s and 30s with your child’s condition, or parents in their 50s or 60s with fragile adult kids, and you will learn what I am talking about. It will make you cry, so bring Kleenex with you for that conversation.
Looking for more? Read How OT Can Help Kids With Complex Medical Histories Heal From PTSD .