Thursday, July 18, 2013
In these trying times, I am clinging to things that are different from last time as though that alone will give me a different outcome. So when the newish laptop shit the bed and I had to go back to the one I started my blog on four years ago – I considered writing in long hand and taking a picture of it to post.
Pregnancy after a loss is a tornado of anxiety. I was nervous with H. I never for a moment believed I would bring a baby home or that he would cry after his birth. I was able to buy clothes and knit for him and make blankets but I was never so naïve to think I would be so fortunate.
With Joe, I had my beautiful healthy son to set the bar against and I thought Joe might be that one in a million babies who would thrive despite an in utero diagnosis of Trisomy 13. I envisioned him and his brother playing together and fighting and having a semi-regular life. I’ve had to grieve each and every dream I had for my boys as siblings. I didn’t believe we weren’t going to the fair until I saw his lifeless body but then I had all the time in the world to go back over the things I imagined - the cotton candy, the ferris wheel, the bumper cars – I had to put them all to bed.
Now when I imagine all over again that we will have two kids playing together, it hurts. The visions look the same but in the background there is a severely deformed, sick kid who can’t join in and threatens to be forgotten in all the fun.
How do I find anticipation in a pit of sorrow and grief? I just want Joe back. And this is not Joe in my belly. I will never hold Joe. I will never hear his sweet voice mess up everyday words. I will never lose the ache in my arms that can only be soothed by Joe. Even when all 35 pounds of H crawls into my lap to drink his bottle of ‘mo’ and cuddles into me, I know even the love I feel for him does not make me forget who is missing in our house.
I’ve been mad at a lot of people and blaming them for the loneliness I feel in my bones but it’s Joe that I miss. Yes I want the phone to ring but I want the hospital to call and tell me there’s been a terrible mixup and I can come pick up my Joe anytime I want to.
Trisomy fucking sucks. It’s not like one small thing or a repairable single defect, it’s a system-wide, body-wide fuck up that just demands a child meet every obstacle possible. When you love someone there is no limit to what you’ll do for them but man, Trisomy 13 gives moms and dads a run for their money - battling doctors and hospitals and genetic counselors and so-called specialists that your child is worth saving all before they even take a breath. It’s more than any little soul should have to bear. I’m sure lots of people feel that way about lots of diagnoses. I can’t speak for any of them. I just recall very vividly what it was like to feel like my body was a walking tomb for seven weeks, trying to maintain some hope that the experts were wrong. And cringing when anyone suggested I just end it. He felt healthy in there to me.
Joe has been gone for five months and three days. Probably if I wasn’t pregnant the details of my previous journey would not be so vivid but he is all I can think about.
It took a few minutes to find a heartbeat last week and I felt my stomach drop (probably why it was so hard to find the baby in there). In my head I was scheduling the D and C. I don’t even know what that is but I was sure that’s what I would need. I wondered if we would try again and how long we could wait and how much more time I had with my 36th birthday peeking around the corner at me.
I have no reason to believe there is anything wrong. I had no cord issues, placenta issues, cervix issues, preterm labor issues, not even gestational diabetes to contend with before. Really the only bad thing that has happened to me was that one time my baby died. So it’s ridiculous to worry right?
Joe’s Irish twin is chugging right along and growing despite my outward appearance of crazy. I’m due in late January and this baby does not have Trisomy 13, 18 or 21 but there are still encyclopedias of things that take babies from their mamas.
I struggled with having the MaterniT21 test done until I was certain in my own heart that the results would not make a difference. The idea of going through it all again terrified me but I didn't decide to try for another baby with the stipulation for perfection. The results change nothing and would not have changed our plans to have this baby. Waiting was awful and the flashbacks of waiting for Joe's results got overwhelming. I was not a tester before all this happened but after losing a child, I'm not the same person. It could have easily gone the other way and that would have been okay too. My anxiety has decreased by about two percent. Some things about me obviously have NOT changed. I asked for an ultrasound so I would at least have a picture to get me through the wait. It helped.
I have to believe that Joe is watching over his family. That we will wrestle toys from my children when they fight and we will see them help each other onto the school bus.
I’m reminded of the Monkees song:
I thought love was only true in fairy tales
Meant for someone else but not for me
Love was out to get me
That’s the way it seemed
Disappointment haunted all my dreams.
And then I saw (his or her) face…
Loss moms don’t usually say “I’m having a baby” instead they say “I’m pregnant” because really that’s all we know for sure. I read that somewhere the day I found out we were expecting again.
So I will repeat the mantra I kept while I was expecting Joe.
Today I am pregnant.
And maybe someday I'll be a believer again.
Trisomy 13 grief stillbirth MaterniT21 loss Patau syndrome Maine midwives cleft palate coarctation of the aorta incompatible with life omphalocele polydactyly pregnancy after loss rainbow rocker bottom feet termination thickened nuchal fold Irish twins MFM Maine Medical Center Maternal Fetal Medicine Trisomy 21 anxiety rainbow baby All About Women EMT Edward's Syndrome IUFD Irish blessing MMC Mainecare Mercy Mercy Hospital NICU Obamacare PTSD Patau's Portland Trisomy 18 baby loss bereaved moms birth plan blessings changing providers coping defects depression home birth mediums memorial for stillborn baby pregnancy shamrock sign language silver nitrate state screenings survivor ultrasound