Collaboration: Mother Stories

Thanks Mom

Barbara was an Adam’s woman. That is what all the ladies in my family call ourselves, Adam’s Women. We are a tenacious bunch and my Mother was certainly no exception. She could sing, skate, sew, ski on water and snow…she spoke several languages and even played the Mandolin. She taught me that it is okay to fail if you are willing to try again.

When I was 13 years old she developed Lupus. She was in the Hospital and everyone thought that she was going to die. I sat on her bed calling out to her, “Mom, Mom. Please come back”. Many years later she told me she had heard me that night and had come back to help me. She didn’t know then just how much I would need her.

Tragedy was just around the corner and she lost my older sister just months after her own Mother had died. And there I was… 17, pregnant and scared. She opened her heart and raised my daughter when I was unable to do it myself. All the while she shared the Joy of Motherhood with me as she encouraged me to be close to my daughter. I thank her for the closeness we now share.

If I could tell her just once more how much she meant to me. She stood behind me like a fortress through all my bad decisions. She watched me fall, get up, fall…and I continue to get back up because of what she taught me about trying. I watched her dying for years and although her disease was brutal, she never lost her heart. The day before she died she was inducted into the Lifetime Honor’s Society. Wearing oxygen and in a wheelchair she received her honor’s, still smiling, still laughing with her friends and family.

Mom, you watched over me and gave me good advice. Too bad I didn’t take it until you were already gone. I hope you can see that I became the woman you always said I could be. And thanks Mom, for showing me what it means to be a Mother. It is sacrifice, pain, loss and UNIMAGINABLE JOY. It is sleepless nights and tearful phone calls. It is waiting up for children who stay out too late and loving them even when they don’t deserve it. It is making them believe they can become their own best person. It is letting them know that they will always have your love. I’m sitting here today with tears streaming down my face because after all these years I can still feel it.

Happy Mother’s Day Mom. I miss you.

-Robin

Maybe, Maybe-not a Mom

I’ve learned a lot more about my balanced chromosomal translocation in the past few months, but that doesn’t really make it any easier to explain to people when my belly is protruding that the baby I’m carrying might not be okay. You can’t tell them an easily remember-able syndrome or a disorder and I guess it’s because of that that they say things like, “I’m sure everything will be fine” or some other dismissive platitude meant to be hopeful or helpful, but comes off as condescending. I smile, but think, “I’m so glad you’re so SURE everything will be okay. Whew. Load off my mind. Hey everybody! Becky is SURE that everything is going to be okay!”

Some women make it through their first trimester and breathe a sigh of relief that they’ve made it out of the miscarriage woods. I’m jealous of those women. It’s not that I’m not grateful that I’ve carried this far – just that alone knocks out one of the bad possibilities for my pregnancy. As my doctor says, I will have more miscarriages than most women if I choose to try and have more kids. But the other, and I think worse, bad outcome lurks on the other side of the first trimester. The possibility where everything looks okay, but it’s not. The possibility where the baby lives long enough to be born, suffer, and die in the first 6 months of life. Or be born with crippling physical and mental disabilities.

This possibility is the reason that a month ago I had a very long needle stuck through my stomach to retrieve some of my placenta for testing. In the time since this test I have found out that my baby is a boy and I have named him; I have picked a color and a room for the nursery; I have read and talked to my stomach; and I have beat myself up over and over again for every one of those things. What kind of idiot knows that with every pregnancy she has a 50/50 chance of a good result and allows herself to get attached before knowing if everything is going to be alright?

I’m in a support group for people with my same problem. One woman in that group has had 24 miscarriages. Another woman’s baby was born and died at 6 weeks with incalculable disorders and problems. Others are parents of kids with mental and physical disabilities born because the problems were undetectable before birth. Because scientists can’t tell us what every little piece of DNA expresses, doctors can’t predict the exact issues that will spring from the deletions and replications of DNA – which is what my translocation does – it deletes or replicates sections of DNA.

I’m very lucky that medicine has advanced as far as it has and the test that I took is available earlier in a pregnancy than ever before. I had the test done at 13 weeks. Yesterday, my pregnancy turned 17 weeks and I am still waiting for the results. If the baby has gotten normal DNA or my balanced translocation, we do the happiest, most thankful dance, and get to be parents come this fall. If the baby got too much DNA (too little has been ruled out by the fact that I haven’t yet miscarried), we begin consulting with the geneticist to see what that would look like expressed in a child. Most likely, we would begin the process to seek out a late term abortion because if the baby could make it through infancy, some of the problems beyond that could include deformities of the hands, feet, genitals, mouth; delayed growth, learning, speech, gross and fine motor skills; behavioral issues; kidney problems; heart defects; seizures; bad eyesight and hearing, etc.

With 4 months of not the easiest pregnancy under my belt, I don’t really know how I feel. I have snapped on a couple of people and given more than my share of birds to bad drivers. I have cried, beat myself up, been lazy, been proactive, but more than anything, I’ve just been trying to avoid thinking about it. It’s a cool, abstract idea that I’m pregnant, but in my mind there’s not really a baby at the end of it. Sure, my stomach is getting bigger by the day and that looks weird, but I try to remind myself that it doesn’t really mean anything.

There’s a pile of baby clothes and nursery decorations I bought when I was feeling hopeful that sit in my living room. I’ve cleaned around these items multiple times and I can’t bring myself to take them upstairs to the room I’ve designated as the baby’s room. I realized the other day that I subconsciously choose that place because it’s halfway in between the nursery and the trash can. Like my pregnancy, I ignore them most of the time, get excited about them occasionally, and get weepy over them sometimes. More than anything, all I want is an answer. It will be hard, probably devastating, if it’s bad news, but at least then I can do something instead of sitting in this state of suspended animation. The one where all I really want is a cigarette and a margarita because stress is hard and nicotine and alcohol are excellent crutches, but we’ve still that that other 50% chance. The 50% where this October I get to be a mom and if I get that chance all of this waiting, stress, hesitation, and indecision will be worth it.

Heads or tails, Oscar.

-Emily

Disclaimer:  Since writing this, Oscar’s results have come back 100% normal and we look forward to meeting him this fall!

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