We are all nurses and caregivers to our children, whether they are exceptional or not. The title pretty much belongs to all parents, Moms in particular, who are usually jokingly referred to as the chauffeur, cleaning lady, teacher, parent and nurse/caregiver. But all of this takes on a whole new level for most Exceptional Parents whose kids have other underlying physical and psychological health issues. Everything from keeping track of medication, various doctors appointments outside of the usual yearly checkup, dental and eye checkup visit, as well as therapy visits for speech, occupational, physiotherapy and psychology/psychiatry can take its tole. In this role, parents (again usually Moms, though sometimes Dads too or a mix of the two), are always the expert and advocate of their child and the ones at all meetings and tabulating data and charts before said meetings. All in all, it can be utterly exhausting, and you wonder when you get to build a regular parent/child relationship with your child where you hope to gradually transfer over some of the physical and mental health care decisions to your child when they are older. It’s a long road, and one not entirely possible for some families to eventually do. Still, it’s important that parents remember that though you take care of your child medically, you are still their mother. This means as their mother, to the best of your capacity in that role, you help forge self-reliance, independence and advocacy so that they can do the best possible to take care of themselves one day.
I’ve had a lot of difficult conversations with Michael lately as has Dad about his diabetes. Michael has been resentful of the fact he can’t eat like his friends at one moment, then will go to the other extreme, as happened the other morning, and be super critical of my meal choices for him. In those moments I sigh with frustration at the unfairness of his rigidity in thinking I am making a mistake and causing his sugars to rise (sometimes this is true, sometimes it is not as I and Dad are still in the early phases of learning about carb counting and making the right balance of food choices etc.). I have actually cursed diabetes out loud and the extra burden it has put on Michael and on Dad and I as parents. Don’t get me wrong. I do not want any pity. No Exceptional Parent does. None of us want to know that we are heroes. We are not. We are simply parents doing what parents do, loving and taking care of our child the best we can. Our kids too are doing the best they can. I will take praise for Michael too as do most of my friends for their kids, as our kids do overcome so many challenges navigating a world that is foreign to them. But even our kids are kids at the heart of it all, and just want to belong, have friends, and be the best they can be.
So my point about finding the balance in being a mother and nurse is this; make your peace with where you are with your child in any given moment. If it’s a moment where you are resenting the nurse role, have yourself a good cry, throw some pillows around and ask another adult to step in and take over so you can have a break. If it’s a moment where you are feeling strong, remember to bond with them in the same way you did BEFORE you knew they had a diagnosis of any kind. Remember, first and foremost above everything else, they are your child. They have their own likes and dislikes. They have their own personality. They are their own little person with talents and struggles, just like you. Bring out their best. Show them how much you love them no matter what they do, because as your child, they are loved because of that. Take time to play, talk, and laugh together. As they get older this may get challenging, but carve out time alone together- at meals times, in the car on the way to activities, or just on the fly. You will find the balance in the same way you did when you were taking care of a newborn long ago. You will learn to multitask and prioritize what is important.
Exceptional Parents, how do you balance mother and nurse roles for your Exceptional Child? Do you take time for you and a personal life in there as well? It’s important to not only have some alone time away from parenting when you have a complex care needs child, but you also need to make time for being together with your partner, other family members and friends. When you have time away from your child, you will come back refreshed, come back full circle, and be able to have a clear definition of what being a well-rounded Exceptional Mom is like. Until next time.
Are you the parent of an Exceptional Child struggling with how best to handle challenging behavior? Are you worried about development, anxiety, or doubting your abilities to help your child become the best they can be? I can help you find your confidence as a parent again. For more information about my journey and coaching programs, check out my website: http://www.creatingexceptionalparenting.com. Let me help personalize tools that will help your Exceptional family thrive!