Skip to main content

Just The Way You Are - October 6, 2011 - Dealing with the Diagnosis

               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.

Comments

  1. Thank you for posting this. Parents need this. I am the mother of a disabled child. My child does not have a physical disability, and it didn't show up for several years after his birth. My son has a psychiatric disability. He is severely bipolar and ADHD. He's 10 now, but when he was 8, we had to hospitalize him for psychosis. It has meant years now of medication changes, psychotic tantrums and violent agression toward teachers and other children. It's scary and it's isolating--and it's no different than what you're going through. And I love what you wrote about the mourning process. It's so true! I mourned for quite a while, because my little one appeared to be perfect when he was born, and somewhere along the line, that happy little boy was lost. But I learned something the day I had to leave him in the hospital. A friend told me that God had given him to me because he trusted me to care for him. You, Lacy, must be an extraordinary woman for God to entrust Christian's care to you. God bless and Godspeed!

    ReplyDelete

Post a Comment

Popular posts from this blog

Why I Won't Allow My Toddler to Have Cosmetic Surgery

It strikes me as odd that I have been asked many, many times if I will have Christian undergo cosmetic surgery to repair his birth defect. Apparently, it's not an odd question to most people, because I could not tell you how many times I've been asked. The number literally lurks somewhere close to 500, if I had to guess. I am not AT ALL offended by the question, and I enjoy explaining my answer, but still, I find it odd to be asked. Imagine your beautiful child that you simply adore. Her little button nose, those ears he got from his daddy, that little smile with that one not-so-straight tooth right up front, those freckles that dot her cheeks, that bright red hair, or that jet black hair. As you imagine that, I am sure you have a few emotions that go along with it: adoration, admiration, love. You probably think that your child is the prettiest thing you've laid eyes on. Well, when I look at my child, with tissue in the place of where eyes should be, and a crooked s

My Experiences with Bullying

For anyone who follows us on Facebook, you have probably, at one time or another, seen someone make a rude or hateful comment on a photo I've posted of Christian. It has been happening pretty much since he was born. In fact, much of the reason that I decided to make the video that went viral was because of all the negative comments that we would receive, whether through social media or face to face when we were out in public with Christian. And I have to say, I am tired of it. I sometimes find myself unable to deal with a hateful comment on a particular day, or exhausted with the idea of checking my email and finding another rude comment left on my YouTube Channel. So this blog is my outlet to vent my frustrations and share my wisdom on the matter. I consider myself a professional at handling bullying, after all, considering all the bullying I've dealt with over the last few years. At first, the comments hurt. I remember the day that I first took Christian out in in public

Was That Rude?

At the Christmas parade last weekend!  Hey everyone! Christian and I experienced something recently that I wanted to talk about and share with you all! We were at his therapy center for him to do his regular physical and feeding therapy, and we were standing at the car because his therapist comes out to the car to get him to go into therapy and then  brings him back outside to the car so that we aren't waiting in the lobby. We have been really cautious since long before COVID was a thing about germs and illness because illnesses always seem to hit Christian really hard.  And then of course my dad almost died in February from COVID. So we just try to stay out of heavily populated places when we can and take common sense precautions like regular handwashing. So, one way we try to keep the germs down is to not wait inside the lobby of Christian's therapy center and instead we just wait in the car for therapies.  So anyway, we were standing next to our car with his therapist, and a