I feel as if there are 2 of me right now. There is Dr Catherine Ashe that goes to work, does her job, and interacts with others like a normal person, that goes to the grocery store and makes dinner and pays bills and generally keeps it together most of the time, and there is the other Catherine Ashe, mother of 3, wounded and grieving and unable to get off the couch. They make strange bedfellows – like Dr Jekyll and Mr Hyde. How can I wake up, go to work, and be relatively normal with all that is happening and will happen? How can life just march on as if I’m not falling apart inside?
I was able to talk to my colleague at work today a little about what’s coming in the future as far as decisions and health issues. I have found that I can talk about James and his future in a very matter-of-fact, calm way as long as I don’t make direct eye contact while doing so. I guess I fear that if I do look at someone while explaining what we are facing, they will see the truth in my eyes – that I am not brave nor strong, but a panicked mother, grasping desperately to any piece of hope that I can, struggling to stay afloat.
Work contributes to a feeling of numbness with regards to James’ diagnosis. My shifts are 10-11 hours long and often intense, so I don’t have much time to dwell on everything. Today, I said something along the lines of “a baby with Trisomy 18” to my husband and realized that I hadn’t said the diagnosis out loud in at least two or three days. It felt strange in my mouth. And then as the full reality of what I was saying washed over me, my heart cracked open.
Our baby has Trisomy 18. My. baby. has. a. terminal. chromosomal. disease. I am one of those mothers that I always felt intense sympathy for when I read about them on Facebook or in the paper or even when it happened to my friends. It’s happening to me. To us.
I say those words and they seem so surreal – something out of a book. This can’t apply to me – to that beautiful face that I’ve seen on the ultrasound. My child has a terminal illness. There isn’t any way to fix it. He will never miraculously get well. He will be born. He will struggle. He will die. I will hold him and love him just like I’ve held and loved my other children, and then at some point, I will have to let him go.
It’s like being punched in the stomach every time I look at the reality head on.
I started reading a book today (recommended by a friend) called “The Still Point of the Turning World.” It’s about a mother who finds out her son has Tay-Sachs disease when he is 9 months old. It is a terrible, degenerative, fatal illness, and the book is her memoir about the diagnosis and the time she had afterwards with her son. She sums up how I feel and how I know that I am going to feel eloquently:
“Tucked inside the moments of this great sadness – this feeling of being punctured, scrambling, stricken – were also moments of the brightest most swollen and logic-shattering happiness I’ve ever experienced. One moment would be a wall of happiness so tall it could not be scaled; the next felt like falling into a pit of sadness that had no bottom. I realized you could not have one without the other, that this great capacity to love and be happy can be experienced only with this great risk of having happiness taken from you – to tremble, always, on the edge of loss.”
I am grateful for James and for the life he has so far experienced. Every kick reassures me that he is strong and fighting and that he will make it to be born and meet the family that already loves him so much. I hope that he can spend time with us here and be free from unnecessary pain and suffering. I hope that we can make the right decisions for him. I hope that I am strong enough to face each day and not be torn apart by grief.
I hope. And I grieve. Hope and grief, living cheek-to-cheek within me at all times.