Grieving is an inevitable part of parenting. All of our children were born their OWN person. Before their birth, all parents have dreams of what they see in their future with their kids. Most of us imagine the child growing up, having common experiences in adolescence, learning to drive, attending their prom, and going off to college. This is what most children do as they grow up, but there exists a population of parents that end up having their dreams dramatically changed. I would gather most parents have their dreams turned because life never goes as you plan. However, sometimes life goes so far off track, you cannot even fathom the reality you live in. I live in this world with my child. I live in a community of other parents that also live in this world. We have kids with disabilities and developmental delays. I am not talking about minor health issues or learning disabilities, but I am talking about kids that are medically fragile, and many have severe developmental delays.
In this world, our dreams have been altered so dramatically it is hard to imagine a future where we won’t be a part of our children’s care. Envisioning independence for our children is hard. Most of our kids will not have childhoods that resemble anything normal to the masses. It is hard for most of us to find a way to accept this place in the world. There is tremendous grief that comes along with raising a child with so many needs, but there is also, even more, joy and love. I have struggled over the years trying to find the balance of accepting the journey I am on, allowing my son to be who he is, and trying to not prevent my grief from giving him the life and childhood he deserves.
So how do we find ways to cope with our situation?
So how do we find ways to cope with our situation? I often think about this for myself and how I would help a new mother that comes into the world of raising a child that is medically fragile. Here are some things I do that help me avoid feelings of loss and grief.
Stay Focused on The Present – the best thing you can do for yourself is to not think about what is coming in the future. If you were to look back on your own life, I am confident many things that have happened you could have never anticipated have occurred. Life has a way of throwing curve balls, and it takes us in directions we didn’t know possible. Focus your time and energy on each and every day. Some days you will need to concentrate on each minute, others each hour, but don’t stay out of the day you are in. You have no idea what will happen in the future, and worrying about it will only make your anxiety and grief feel worse.
Focus on the Positives of your child – As your child grows you will frequently hear what deficits they have, but this is only a snapshot of who they are as a person. You will be bombarded with developmental charts, therapy evaluations, and have reports from school that will remind you where your child is at compared to his peers. I use to look at these reports and feel really sad. However, I now look at these reports and see how far he has come. Our children will meet milestones in their own time, and every single inch stone is worth celebrating. Focus on the all the milestones they hit, and try not to compare your child to same-aged peers. The minute I realized his path was different it was easier to accept our place.
Stop the Comparison game – Our kids have been through a lot more in their short lives than most adults will deal with in their lifetime. We must have grace and realize due to the magnitude of their illnesses that life for them will look and feel different. I spent many days early on comparing him to peers that were typical, and it would eat me up. Over time, I realized that his journey has been his own, and I have to respect that he will learn everything at his own pace. In that time, I have been able to see his strengths. He won’t do many of the things that a typical child will do, but he also gets to do things an average child will never do. He got a trip to Disney World, he was a special guest in a parade, he gets gifts and cards from people all over the world, and he is able to participate in programs especially for children that are medically fragile. None of that would have ever happened had he not been given the life he had. Yes, our life is different, but it’s also provided us amazing gifts and opportunities.
Find outlets to manage your stress – Raising a child with medical complexities is exhausting both emotionally and physically. It is important you find the time to take care of yourself. I scoffed at this notion in the early years. I had no idea how to fit in all his needs and my own. I found myself spiritually empty, emotionally drained, mentally sick, and physically exhausted. I have never had the best respite care for my son, but I have now found ways to take care of myself. Easy things you can do for yourself: Eating a balanced diet, exercising, meditating, reading, journaling, and getting out of the house to spend time with friends. If you can’t manage the stress or anxiety on your own, find a professional to talk to about your feelings and help you navigate the stress of your life. There is genuine trauma that is faced in this world, and it is important you find a way to communicate the stress and find ways to reduce the stress.
Ask for help – If you are struggling at home to get it all done, ask for help. It’s hard for me to take care of all the needs of my child, his appointments and maintain a home that is free of clutter and clean for his medical equipment. I was able to find a way to hire a cleaning agency via his county social worker to help us with the housework. I have been able to ask my parents to watch him at least once a month so my husband and I can have a night out together. If I have appointments that I can’t bring him to, I try to find a trusted friend that he can be with for a few hours. We cannot do it all, and we are not designed to do it all. Use the resources you have been given and find help in the people that want to help. Most people want to help, but they don’t know how to help. Give them direction and tell them what you need. It was the best thing I did for my family.
Our children need us to be positive, help guide them, assist them to learn, and they need us to love them unconditionally.
Grief will and does happen. It is important to recognize what you feel, give the feeling the time it deserves, but it’s important you not stay stuck in grief. Our children need us to be positive, help guide them, assist them to learn, and they need us to love them unconditionally. I know all too well how hard it is to feel stuck in grief, but the sooner you find your way out of the grief the happier you will become and the better parent you will be.
Katie Paulson is a Freelance Writer, Blogger and Advocate for Individuals with disabilities. Katie has been featured on The Mighty, Yahoo Parents, Huffington Post Denmark, Mamamia Australia, Firefly Friends, and her family was featured in a Cover story in Fohla Sao Paulo, Brazil. She works tirelessly in her community to improve access and inclusion for children with disabilities. She is founder of a local support network in her community. Her goal is to ensure all individuals with disabilities are given the respect, rights and access they deserve to live a life of inclusion. To read more from Katie visit her blog Without a Crystal Ball.