Tertia has asked me to write a post about my experience with grief. My perspective is unique in that I have not actually experienced a loss in the form of death. But this acknowledgment, that what I am feeling is grief, is precisely why I appreciate her thinking to include me. It was, and is, the first step for me in learning to cope with my emotions. The acknowledgment that it is normal and okay for me to grieve, even though my girls have survived. The loss that I have experienced is very deep and very real, though difficult to put into words.
It is the loss of ideals. The loss of having the pregnancy, birth, and brilliant, beautiful, "perfect" children that I dreamed of all my life. I think that every parent of an extremely premature infant deals with grief over the loss of their chance at a normal pregnancy, without the heartache of the NICU and the struggles that continue once you get home. I am sure that every parent of a child with a disability also deals with grief over the loss of the child they had imagined.
Time helps to lessen the grief. I can only imagine that once a preemie begins to walk and talk, and begins to appear more on track developmentally, the grief over the NICU experience lessens. But when your preemie survives with more significant disabilities, you have a constant reminder of your grief. After three years, there is not a single day that goes by when I do not think about their prematurity. Not a single day goes by that I am not reminded of their disabilities.
But it is getting better. The days spent crying, and not wanting to wake up in the morning, are definitely fewer and further between. The joy of having them in my life, and seeing them happy and thriving, is slowly drowning out the sorrow.
But still, there are bad days. Days when the big questions loom in my thoughts. What would Eden be like now if she hadn't been a preemie? What would THEY be like? How would my life be different? Is it my fault? These questions are so hard for me. They arouse such sorrow and heaviness and guilt. My hands tremble as I type them, and I wonder if I should really put them into words.
I am reminded of these questions at random times. Like when I am struggling to get Eden out of the bathtub, all wet wriggling 22 pounds of her, and I think "how will I do this when she is 18 and weighs 90 pounds?" Or when I am carrying her into the restaurant, and she spies Holland walking and squeals and literally tries to leap from my arms to get down and walk with her. Or when, for the third, or tenth time that day, I watch her looking on as the other kids run and jump and play, with such longing in her eyes. Waiting, and often demanding, for someone to get her and help her to join in the fun. When I am tired, and my body aches, as I crawl with her through the tunnel for the umpteenth time, or hold her on the monkey bars, or push her around on the firetruck, because...well, because she wants to and I don't want to hold her back because of my own limitations.
Having a child with a disability can be very isolating. I think grief in any form is probably isolating. Part of it is because other people don't know the right thing to say. Another part of it is because I don't know the right thing to say. I don't want to monopolize every conversation by talking about myself and my kids, but it's difficult to make small talk when such huge thoughts are looming in my mind. It's like the elephant in the room.
I've struggled to find a balance, and for me this blog, and my online support groups have been vital. This is where I can "let it all hang out." Where I can laugh, and cry, and share, and vent, and brag until I am blue in the face without feeling like I am burdening anyone. It allows me to get my feelings out, to let everyone know how I am feeling, without putting us in an awkward situation. It also allows people to reflect on what I have said, and to respond in a more supportive and thoughtful way.
I am lucky to have many awesome and amazing family and friends who are generally thoughtful and supportive people. People are all different, and not everyone is comfortable providing emotional support during stressful times. I try to be respectful of this and I definitely don't hold it against people when they say the "wrong" thing. I'm not sure there is really a "right" thing to say that will work equally well in all situations. I do know that it is important to let the person who is grieving set the tone. I hate to give a list of things NOT to say, because many people reading have said these things to me, and I honestly take them as they are intended and do not hold them against anyone. I know when your heart is in the right place, and I appreciate the effort.
That said, it isn't particularly helpful to hear things like "everything happens for a reason," "God doesn't give us more than we can handle," or "it could be worse," when you are in pain. Things like "at least she's cute," and "they never should have been saved in the first place," are even worse. "You are a stronger person than me" or "I could never do what you are doing" are also difficult to hear, because trust me, I would have said the same thing to someone else in my place three years ago.
But gosh, with so many things NOT to say, what CAN you say? You can say that our children are beautiful, that you think we are doing a wonderful job, that you recognize the blood, sweat, and tears we have put in to get where we are. You can listen to me, laugh with me, rejoice in their progress with me. I don't want your pity, but I will take your empathy. When I am down, and looking for a shoulder to cry on, you can cry with me.
Cecily, Snickollet, Alida, Vanessa, and Tertia are all doing posts about grief, and reading their posts will offer different perspectives on the topic. Linda, Sarah, and Liz have also taught me a lot about how to support and provide comfort to someone who is grieving. Thank you all for putting your thoughts and feelings into words. It means so much to many people who are looking for someone who understands.