I will never forget the message left on my phone the day my doctor found something wrong on my son’s ultrasound. He was “concerned” about the results. He called three times that Thursday, each time sounding a little more urgent, but never giving details. I didn’t get the messages until Saturday evening, and by Monday morning I was ringing his phone off the hook trying to get a hold of him. When I finally heard the news, I came unraveled. The next few months leading up to and including Christian’s birth were a rollercoaster of emotions. It was hands down the most challenging thing I have ever had to face and I can think of few things that would be harder. I am not alone in this experience, however. This experience happens more often than we’d like to hope. Dealing with the grief and other emotions that comes along with hearing your child’s diagnosis can be very challenging. So where do we turn for help? I have found a wonderful site that discusses how to deal with having a child with a disability, and I would like to share it with you. Not only so that parents who are having to cope can understand how to deal, but also so that those who are on the outside looking in can better understand what the parents are going through and know how to help them.
Learning of your child’s disability entails a mourning process, much like that of losing a loved one. Why you ask? Well, I haven’t found any research to back it up, but my theory is that the grieving happens because the parent really has lost something, be it their hopes and dreams for their children, their wishes to see their child grow up healthy, or a vast array of other things. But either way, the process is similar and there are several stages that a parent might find themselves going through. First is shock at the initial news. This may show itself in the form of confusion or a feeling of being overwhelmed.
Next, and most obviously is sadness. Sadness is sometimes given a negative implication but it is very necessary to the process and helps the mourner to move on. It is also not to be confused with depression. Depression impedes the likelihood of moving forward, while sadness is a release of emotion that is necessary to moving forward. After sadness, a person may find themselves angry. Whom the anger is directed at can vary from case to case, and unfortunately, sometimes that anger is focused on close loved one.
Next, many parents go through a stage of denial. They do not want to hear the diagnosis of their child, so they don’t. Like anger, this reaction is not voluntary. It happens as a defense mechanism that allows them to get through such a horrible time. Loneliness is the next stage. It is easy to feel isolated when everyone around you has healthy children and you don’t. I remember feeling like the only parent who had a child in the Vanderbilt NICU, even though every day I walked by the board in the lobby that read “Babies in the NICU today: 77” and passed at least ten rooms with occupied cribs. I also remember feeling like no one would understand if I tried to talk to them. Of course, neither of these was true and it didn’t make sense for me to feel this way, but I couldn’t help it.
Finally and hopefully, acceptance will come. This doesn’t mean that you give up and let the cards fall where they may. It doesn’t mean that you let your child fall by the way side because that is just what happens to children with that disability. It means you are ready to stand up and advocate for your child. It means that you have realized that you are strong enough to handle the challenges that will come with raising a child with a disability. The key to getting through this process successfully is time. It is a process that happens over a period of time and in the course of events that begin the journey of raising a child with a disability.
I would like for you to understand the importance of recognizing this mourning process. When a grieving person is angry and you feel like turning away from such an unmanageable person, that is when they need friends and loved ones to hold close and comfort them. When someone is mourning and you can’t understand their feelings and thoughts, it’s not necessary that you understand, only that you be there for them when they need you. Please realize that they are mourning and dealing with their pain as best they can, and they need people to support them and help get them through. It is vital! It may seem like nothing you say is getting through to them or making a difference, and it may not be at that moment, but I assure you, down the road when they remember the kind words you spoke to them, trust me, it will make a difference. I have discussed only the beginning of the journey that is raising a child with a disability. Next time, I would like to discuss the importance of caring for the caregiver of a child with a disability and further discuss a healthy and proactive management of raising a child with a disability and resources that parents can turn to for help. If you have any ideas, comments, or questions, as always, please e-mail me at laceybuchanan@gmail.com. Thank you for the opportunity to share my thoughts with you! To end, I’d like to share a quote I recently stumbled upon and I hope it inspires you as it has inspired me: You were given this life because you are strong enough to live it. 