One year ago today, I found out that we were expecting our third child. I remember the excitement washing over me at the thought of another baby. I love infants. I really, truly love the infant stage. The snuggles, the nursing, the warm, fat, sleepy baby. Snuggling that baby in the Moby while I shopped at Target. The sweet smell of milk breath. All of it. Infancy is one of my favorite stages. I love being a mom. I’m not the most patient. I’m not the best disciplinarian. I might worry about order and cleanliness a little more than I should. But I still give it my all. I still get up every day determined to do it better. And by it – I mean ALL OF IT. Mothering, my job, my interpersonal relationships.
I remember having the same worries that all expectant moms have. I found out so early (5 weeks) that I worried about miscarriage. I worried about eating deli meat, exposure to anesthetic gases at work, toxoplasmosis exposure at home in the litterbox, accidentally eating a soft cheese…the usual things that American mothers are told to worry about. And I worried about the bigger things – difficult labor, the pain involved, an emergency c-section.
But I never worried about trisomy 18.
I don’t want trisomy 18 in my life. I hate it. It’s a terrible disease and it robs mothers and fathers of much loved children.
But I can’t call trisomy 18 a curse. And I don’t have to look very far to see that there is a huge silver lining to this dark cloud.
You see, I’m self-centered. I’m selfish. I’m sheltered.
I have never known what it’s like to starve. I’ve never know what it’s like to not have something that I really wanted. I’ve not known what it’s like to not have a solid roof over my head and a warm bed in which to sleep.
My life has been lucky and wonderful. I have 2 parents that love me. Aunts, uncles, cousins, grandparents, friends. And I married an amazing man and into his amazing family. I had two beautiful, healthy daughters without any struggle with infertility. I had them in clean, safe surroundings with doctors and midwives to guide me (and EMTs, in Hazel’s case). I am Caucasian in America. My life has been easy.
When James was diagnosed and when he first came home from the hospital, I went into a tailspin. I focused on the difficulty of what we faced, the burden that it would impose on our family. I was terrified of sacrificing my happiness, my comfort, the ease of my life, to take care of another person’s daily, constant needs for an unknown length of time.
And is it a difficulty? Is it a burden?
Yes, watching my child struggle is the hardest thing that I have ever done. But he is not a burden, and he never will be. The sleepless nights, the hours of nebulizing, watching him closely, administering his medications, sleeping in the hospital next to him…none of that is a burden. It is a gift to witness his life and to be his mother.
He has taught me so much. He has introduced me to so many people who have struggled and lost. He reminds me that the world is a beautiful place and full of kind people. His purpose here seems very real to me. He is a guide, a teacher.
Most importantly, he has made me re-examine my life. He has made me realize that other people need help, need encouragement, need a reminder that they are loved. He has shown me that my children need to learn this too. When my 5 year old whines, “I’m staaaaaaaaaaarving” thirty minutes after lunch, or she complains that she hasn’t watched TV or doesn’t have the latest, greatest toy, I reflect on what it really means to starve, to not have the basic necessities of life.
I want my children to learn about that. I want to make a difference for other people, and I want my children to make a difference too. I want them to grow up understanding how rich and lucky we are so that they will open their hearts and pockets and give freely to others.
People keep telling me how amazing I am, how wonderful, how strong. But I’m not. I’m self-centered, narcissistic, and sheltered. The worst place that I’ve ever been was Juarez, Mexico on a mission trip when I was 16. I am not a wonderful person. I have done things that I sincerely regret in my life. I have hurt people – intentionally and unintentionally. For 36 years, I have pretty much focused on myself and my family. I haven’t reached out enough when I should have. I haven’t been enough of a light in a dark world.
Thanks to my sweet James, I am trying to change that. He continues to teach me every day, and I continue to be his faithful student.
I love you so, little man.