My heart is heavy tonight for a friend whose baby was just diagnosed with a fatal neurological disease. I feel like I should know what to say to her- that the words should come easily and confidently, because I’ve been in her shoes. I know how this blow feels. But they don’t come easily, and I don’t really know what to say. Because this life, this experience of loving a child you will most likely outlive, is so unnatural and foreign to anything you would ever plan or prepare for, and it takes a long time to become your “normal”. And then when it does become normal, that’s a whole other tragedy, because why the hell should this have to be normal?
What I think I should say to her and anyone else in this horrible situation, based on what I’ve learned the past two years, is this:
- There is no “right” reaction to this news and no “right” way to process it. I have a good friend who cried for days after her son was diagnosed, but I did not. Even today, I rarely cry about Grayson. I write about him, I talk about him and his disease a lot, to anyone who will listen, but I just can’t cry. I sometimes feel guilty about this, but I realize it’s probably my subconscious defense mechanism. If you cry, scream, curse, and yell at God, that’s ok. If you walk around in a fog and don’t want to talk to anyone for a month, that’s ok. There are no rules here.
- Give grace to people who mean well, but just don’t get it. There will be people who say well-meaning, but completely dumb things. You will feel like they are minimizing your and your child’s suffering by being overly positive. You will be told you are SuperMom and that they don’t have any idea how you do it- just because you are in this role that you never asked for and would trade away in a second if your child could be healthy. Grace.
- Your child is the same child you knew and loved the hour before diagnosis. I remember the day after we found out Grayson had Leigh’s, I felt guilty because at his bedtime, I was ready for him to go to bed. I felt like now that I knew I didn’t have forever with him, I should want to spend every second with him, hold him tight, and never want or need a break from him. The exact opposite is true. For your emotional health, you need a break. My advice is this: pursue a program that will give you respite and/or nursing care. The next few years will force you to become the nurse and therapist you never wanted to be, but giving someone else some of that responsibility will allow you to focus most of your energy on just being Mom.
- Find a support group. You will not only get valuable medical advice and emotional support, you will meet some of the most wonderful people you never would have met otherwise.
- Grayson’s comfort is our goal for his life, and it’s what we base every single decision we make for him on. It actually makes decisions for him a little easier when we put it though this filter. But it also sometimes means disagreeing with doctors, putting him through an elective surgery, or doing things over and over and over that make us uncomfortable (I curse the day I introduced Grayson to Veggie Tales!)
- Don’t focus on death, but look at each day you have as a gift. This really is an in-your-face opportunity to truly treasure the time you have with that precious baby. And it’s ok to be mad at God, but make up with Him sooner than later. You are going to need Him.
- Don’t be afraid of or resist a feeding tube if your child really needs it. Yes, it’s horribly sad that Grayson can’t eat or drink by mouth, but feeding him is zero stress on those who take care of him. We aren’t fighting him to eat, worrying about hydration or him getting enough calories, and his tube is just a part of him now. And once you get the hang of it, it’s second nature and not at all scary.
- Let people help you during this time if they offer. Say yes to anyone who offers to bring you food- the last thing you want to do tonight is cook, right? Many people will ask you to let them know what they can do to help. If you need something, ask for it. If you can’t think of anything, don’t feel pressure about that either. Again, no rules.
- This life will never be normal or anything like anyone else’s life, but it will become your normal. And when that happens, there is some comfort in that. Grayson got very sick and was in the hospital for two nights last weekend, and what would have been a huge event three years ago, is now just a tiny bump in the road, an event that will most likely mostly fade from my memory in a few days or weeks. But, it will never become easy seeing your child in pain. There are things that your baby will go through that will make you furious, sad, and helpless. It’s just part of it. I’ve come to realize that Grayson doesn’t hold onto that pain though- once it’s over, he’s happy and content to be sung to and loved on. I wish I could be more like him. Let your child be your teacher.
This quote accurately sums up my experience of being blessed with my special little G-Man. Most days, I now find I do a pretty good job of floating, but days like this remind me I’m still very much in the deep end. Fortunately/unfortunately, there’s a good many of us hanging out in the deep end, and I think we need to help each other float a lot of the time.