Disability shatters the dreams you made for your child before they were born. Patty wanted her daughter to be tall and play volleyball, and Laura wanted her son to love being in nature, hiking, camping and swimming. These were our passions that we wanted to share with our children. Both our kids were diagnosed with cerebral palsy after birth. Disability takes those dreams away!
As parents, our job is to fix things for our children and make their lives easier, comfort their pain, keep them safe, and let them know they are always loved. But we can’t fix a disability, and that is the pain we all face at one time or another. We can make things better but we can’t make it go away.
This response is grief – it is automatic, unlearned, and unavoidable. It is cyclical and can hit you at obvious times (different milestones throughout your child’s life) or surprise you when you least expect it. It needs to be shared with a significant other and it is not understood by most of the rest of the world. No one died, so why are you grieving? You are grieving for what was supposed to happen – the typical child.
This journey through emotions allows you to create new dreams for your child and your family. It’s not easy and it’s not fun, but most of us get through it, and sometimes with a lot of help. This is a great time to connect with other families. Most of us who have gone on this emotional journey are very familiar with the cycles of grief – a new diagnosis can kick you back to the beginning of your journey or, at least, it might feel that way. Then there’s searching for answers, programs, or someone to help, and finally back into some “normalcy,” with an eye out for the next thing that may appear. However, your new normal may be different from what other families’ experience.
There are also “feeling states” linked to grief – fear, anger, anxiety, guilt, denial, depression. Most of these are self-explanatory and understandable. Who wouldn’t be afraid or angry when they receive a diagnosis for their child or feel guilt or depression when they get bad news? You might hear people talk about denial as negative, but we have a different take on it: Denial can be a good thing! We recognize it as an essential part of coping – it allows you the time and space you need for your emotions to catch up to the information that you just received. It’s only negative if you don’t do what needs to be done for your child, your family, or yourself. If you can’t put one foot in front of the other, then it’s time to find some help.
Sometimes just knowing that other parents have been able to move past the hard emotional turmoil you first feel when you find out your child has a disability is all that a parent needs to move forward. Sometimes it can take hours of therapy to move forward. Sometimes, you just move on because that’s who you are. We just want you to know that we’ve seen many, many parents go through the grieving process, make adjustments and changes necessary to move on with their lives, and be happy again – including ourselves, when we received a new diagnosis for our children or faced new challenges. None of this is easy but it is doable! And there are many parents just waiting to give you a hand! So connect with other parents or just talk to another parent in a waiting room if you are able – these connections can really help.
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.