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On Wondering If I'm a Good Mother to All of My Boys

What does it mean to be a good mother? For some people it may mean being able to have quality time with each of your children and building those individual relationships. For some people it may mean that all of the child’s needs are met. For others it may mean protecting them from some of the harsh realities of life. For others it may mean making sure they know they are safe and loved. And for a group of moms of children with a disability, it may mean making sure everything is done in your power to figure out, address and help your child cope with their unique needs and health issues.

What happens when you have a rare disease warrior and siblings without those medical challenges? Finding the balance between being a good mother for my rare disease warrior and my other two boys can be very difficult and overwhelming. When my son is sick or has to be admitted into the hospital most of my focus is on him and his needs. I may have to pick up at a moment’s notice to drive to the doctor’s office or be admitted. When this happens any plans I have with my other boys have to be postponed. They may have to go stay unexpectedly at a grandparent’s house. My focus is on the immediate crisis or issues surrounding my rare disease warrior, so my other boys have to take more of a back seat. Given his physical limitations and his medical needs he needs the most help and support to navigate his world. Despite being the oldest he is probably the most dependent of my children. I encourage and expect a certain degree of independence from my younger kids, but not my oldest given his needs. With all this attention on him and all this help directed to him it does not always seem fair to my other boys to expect them to do something a certain way, but not to hold their older brother to those same standards. I am being a good and devoted mother to my one son and his unique needs, but what about my other two?

My middle son struggles the most with the emotional journey that having a brother with a medical issue entails. Some days he is struggling to understand and control his emotions. He needs more of my energy and focus to help validate what he is feeling and help him implement strategies to cope with his big emotions. When I am focused on helping him, I may not be doing what my other two boys want in the time that they want it. He wants and needs one on one attention and support because he sees what is expected of him and not his brother. He doesn’t understand and will sometimes complain of phantom pains just to try to get the focus and attention that he sees his brother get. Does giving his brother the attention he needs mean that I am not being a good mother to him? If I take him on special trips or do special activities with him does that mean I am not being good or fair to the other boys?

My youngest son is my easiest in some ways but he is also the baby of the family. He grew up in the middle of a worldwide pandemic so what he knows is the five people he lives with. As a result, if he interacts with new people or even family we haven’t seen because of the pandemic he is very shy. It is in those moments that he needs my comfort and my support the most. When I am comforting him or trying to get him to engage in something new I may not be addressing my other kids the way they want me to. He is also my most independent and most willing to follow directions. Since my other boys require so much of my energy am I giving him enough of it? Do I let him do more things on his own simply because I am too burnt out from the other boys’ needs? Am I giving the others what they need but not giving him enough of my attention in the process?

I don’t mean to sound like I ignore two children while I help and support one child, but when one child needs help a majority of the focus may go to them. Like in all families the needs and supports ebb and flow within a day, an hour or even a minute some days. There are times I feel like helping and supporting one child through what they are going through makes me a good mother for that specific child, but not necessarily for my other boys in that moment. I want to be a good mother for all of my children all the time but it is so hard to balance that. The medical needs of one always seems to supersede the needs of everyone else in the family. I know that dealing with those needs is important and takes priority, but I do feel bad and guilty that it affects my other boys the way it does. Part of being a mother of any child is worrying about if you are doing a good enough job and if you are meeting their needs. With a rare disease child or any child with a disability, their needs can easily overtake a family and you become more aware of what you are and aren’t doing for each of your children.

Some days I feel defeated, like I only was really there for one of my children … that I failed the other boys. Some days or hours I might feel like I have it under control. Other days when we play outside together or bake cookies together I know that I am doing what each of my kids need and that I am being a good mother. I want to be a good mother and most of the time I think I am doing a decent job but some days, I really wonder if I can handle being good enough for all of my boys at the same time or if I am only capable of being good enough for them one at a time.

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