How I Process Anticipatory Grief

When I first learned about Lukes brain damage and what that meant I lost it. Sitting there in the NICU with other babies around I lost it. Inside I panicked, and as the doctor told us the extent of the brain damage the first question that came out of my lips. Well, the truth is I couldn’t even ask the question. It came out like a jumbled mess was how long will he live? Of course, he didn’t have an answer but the words he told me will stick with me forever. He told me that he can’t say how long he will live but the truth is, “you don’t see many 70-year-olds with cerebral palsy and a G-Tube”, and those words stung. They hurt so much and every day until now it’s a fear that I live with.

Anticipatory grief carries many of the symptoms of regular grief.

So what is anticipatory grief? If you look it up it will say that it’s a feeling of grief occurring before an impending loss. Typically, the impending loss is the death of someone close due to illness. Anticipatory grief carries many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression. Having to manage this, coupled with the exhaustion that comes with being a caregiver can quickly lead to burnout and definitely many breakdowns. Anticipatory grief brings a type of anxiety that can never turn into peace because at every turn you wonder if you will have your child for 5, 10, or 15 years. There is a hyper-alertness that keeps you in fight or flight. This anxiety then leads to caregiver fatigue because you panic any time your child has to be taken to the hospital or they experience any medical issue.

My husband and I struggle with anticipatory grief because we don’t know how long we will have Luke. Yes, I know that no one really knows how long they will have their child, but that fear doesn’t stare you in the face every day. Every time Luke has a seizure (that’s multiple times a day), knowing that he doesn’t use his muscles, and waiting for every procedure or surgery, that fear of losing him is there. Just yesterday he was in the hospital and I sent Adrian a picture of him in his hospital gown. Adrian made the comment that we’ve seen him in that same hospital gown way too many times. Sitting there talking to the anesthesiologist and hearing her explain the dangers and risks of going under was hard. We’ve been there so often that the nurses know who he is. Yet, every time Luke is in the hospital I have to give a full rundown of his history in the NICU, current struggles with seizures, and the list of medications he is on, and I find myself praying that his life is not cut short. I have to tell them that Luke is a hard poke, meaning that it takes a lot to find a vein so please be gentle and get someone that is good. I have to tell them that Luke runs at a lower temperature (96 or 97 degrees) so they need to keep warmers on him during any procedure, Luke’s heart rate accelerates when he is under, and Luke sometimes takes a long time to wake up from the anesthesia. That last one really scares me. Everything about Luke’s medical care reminds us that every day is a gift with Luke.

When you experience anticipatory grief you’ve thought about your child dying

How does anticipatory grief play out in my head? This is hard to admit but I’m going to try and be as honest as possible. I’m going to talk about things that no parent will admit that they have actually thought about. When you experience anticipatory grief you’ve thought about your child dying. Yes, that is literally what anticipatory grief is. When you fear something you fear it because in your head you’ve seen it. It’s something very difficult to talk about but it’s something very real. I’ve sat there balling my eyes out wondering how I would tell Mia and explain it to her, envisioned how I would react to watching my baby die. I’ve wondered how my life could go on when I’ve lost a child. I’ve thought about how I will be broken for the rest of my life. That is anticipatory grief. Sometimes your mind goes places, dark places that you would never dare speak out loud. Every day I have to fight those feelings and keep them at bay in order to preserve the joy in my life.

Rehearsal of death

Sometimes anticipatory grief includes what’s called the rehearsal of death. You may find yourself visualizing what it will be like to have your loved one gone. Or if you are dying, visualizing how your loved ones will carry on after your death. Many people feel guilty about these thoughts, but they are very normal and are part of accepting the inevitability of death. I just don’t think it’s normal for parents, because there is nothing normal about watching your child struggle with an illness that you cant find a cure for. In reading stories of other parents that struggle with anticipatory grief I read this quote: “My child is alive yet I grieve my loss over her every day. How awful others must think of me if they have actually lost their child to this world in both the physical and spiritual sense”. There’s guilt. The amount of guilt a special needs parent feels is like the weight of the world. For me, I’ve accepted that I will carry guilt like a shadow for the rest of my life and I have to learn to live with it. Some days I acknowledge it more than others. Other days I choose to, what I call “shelf it”, I just put it away but in the back of my mind, it’s still there. Anticipatory grief is one of those things that if you’ve been there, you get it, and if you haven’t, you don’t. But I hope this blog brings a little bit of understanding to this type of pain.

God is how I keep it together

So what is it that keeps me going when I carry so much pain? It’s the only answer that to me makes any sense, and that’s God. That’s it, God is how I keep it together, how I walk this life with my special boy and family, and it’s how I choose hope. You see there's something about faith that helps me know that this world is not it. It doesn’t end here. There is more to life than this broken world. So I know with every ounce of my being that whether in this life or the next my son will be 100% healed. There is no doubt in my heart that he will get his miracle healing. Because of my faith and belief in God I know that one day I will see Luke complete and fully healed, I will get to hear his voice and feel what it’s like to be hugged by my own son. So yes anticipatory grief hurts so much, but GOD. But God gave us a way out.