Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?

14 Responses to “Something That I Don’t Talk About”

  1. Jennifer Butler Basile March 28, 2013 at 4:33 pm #

    Beautiful. Like so much of your writing. Which is why I’d like to nominate you for The Liebster Award. Go here to get the skinny!

  2. 1tric March 28, 2013 at 5:44 pm #

    A good friend of mine had her first baby at 21 years of age. He was born with Down Syndrome. she was warned she had a significant chance of having another child with ds. She found out after only ten weeks she was pregnant again! This was nearly thirty years ago. No scans. She had to wait until the delivery to discover she had a perfect baby girl! I cannot imagine what you and others go through in that time. Great post.

    • mommyhasissues March 28, 2013 at 9:08 pm #

      Thanks. Oh my gosh! 10 weeks later. I would have died. That must have been so hard for your friend. We get through it though. And disability or not, our children make us better people. Most days…;)

  3. purplepincushion March 28, 2013 at 8:26 pm #

    Believe it or not I had these very same emotions and issues to come to terms with when we decided to switch from a traditional, healthy child adoption, to adopting a child with significant special needs. Even though I wasn’t physically pregnant with this little girl who had captured my heart, to turn away from her would have been the very same as having an abortion. If I had, in fact, been carrying her in my own body I would certainly have kept her regardless of disability. I thank God every day for giving me the courage and strength to take the leap of faith and follow Him where He was leading my heart. My sweet daughter has taught me more about love, compassion, strength, and determination than anything else ever could. I really am not worthy to be so blessed. πŸ™‚

    • mommyhasissues March 28, 2013 at 8:55 pm #

      What a beautiful comment! I’m so glad you shared that. I feel the same way.

    • mommyhasissues March 28, 2013 at 8:57 pm #

      Oh. And your children are your children. Regardless of whether or not you physically gave birth to them. It’s the same. I think.

    • donofalltrades March 29, 2013 at 4:28 am #

      Oh purplepincushion, I could just hug you!!

  4. donofalltrades March 29, 2013 at 4:33 am #

    What a touching post! My wife was crying in the bathroom one morning and I could hear her sobbing. I don’t know why, but I just knew she was pregnant We had already had a girl and a boy who were both relatively healthy and perfect kids! We had #3 and he’s been a handful for sure! I tell my wife that if he wasn’t given to us, maybe he’d have been given to a person who couldn’t have handled his strong personality and would have hurt him for being him. Sounds sick, but that’s how I feel. He’s given me a lot of blog material too!!

    • mommyhasissues March 29, 2013 at 12:11 pm #

      It’s so true though. I used to hate it when people would tell me that there was a reason that she was given to me. Now I absolutely believe it. The thought of someone else having her and treating her badly or not loving her enough makes me sick. No one could love her as much as I do. It just wouldn’t be possible. My 3rd is rather stubborn and hard headed? too. That’s putting it nicely. She’s quite challenging:) But super cute. Good thing;) Something about that 3rd one….

  5. lisamchugh March 30, 2013 at 1:13 pm #

    My 11 year old daughter has Waardenberg’s Syndrome. It’s a mash-up of different characteristics, one of which is hearing impairment. It’s also a hereditary condition I passed on. Aren’t I kind? With each child, there was a greater chance of them having hearing impairments. Ella’s number 2 of 5 and the only one with a h.i. I think I’m blessed to have a child with a disability. I see the world differently than before, more visually. Her family and friends do, too.
    Whatever decision you make/made is the right decision for you. From what I have read, if Ginger had exactly the same, you would still be the perfect mum.
    Lovely post.
    Lisa @ Cut My Milk

  6. My Dance in the Rain April 2, 2013 at 12:44 pm #

    Having another child after having a child with special needs is a very delicate subject. After Sophie’s geneticist encouraged us to have another child to help Sophie’s development (we had already been tested and knew we were not carriers of the 5p deletion) it took me over six months to convenince my husband. In the end I got what I wanted and I was fine until I went behind his back to have some genetic testing and it came back positive for DS markers. I then drove myself insane with worry for about a week ( I had positive markers with my 6 yr old too and he was perfectly healthy). That made my husband very upset but we both moved on, I decided against the amnio and was at peace with it all. If is were to be than I would love my baby no matter what. Tristan was born a month early (thanks to gestational diabetes) but completely healthy and he is super smart.


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