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Tuesday, November 5, 2013

And then there was seven...

Our Baby Announcement. I don't think people got it the first time.

I'm fourteen weeks pregnant today. The seventh extension of my heart and soul is living and growing inside of me. Lucky Number Seven. We weren't trying to get pregnant, but it happened anyway. God had other plans for us. He always does.

Once the initial shock of discovering our little stowaway subsided, everything seemed to be going well. I was tired, but I barely had any morning sickness or heartburn.  I even got an appointment for CVS relatively quick this time around. I guess going through this process so many times makes things easier for all parties involved. I knew what to expect having undergone a CVS with Blaise and our genetics counselor was very familiar with our case. She was our champion advocate when I became pregnant with Noie. She was the one that found the one out of three labs worldwide that is equipped to test for Factor VII Deficiency. I think she was meant for us.

I bled terribly when I had my CVS with Blaise -- in fact I thought I lost the pregnancy. This time around I was lucky enough to have the test done through my abdomen. It was similar to the amniocentesis I had during my pregnancy with Noie, but just a bit more painful. 

The extraction process

Our first detailed glimpse of "Lucky"

I had the test done on October 10th and by October 22nd, we got our first call from our genetics counselor. So far everything looked good. No signs of any genetic anomalies and we were expecting a boy! It would just be a few more weeks before we found out the results from the lab in London. 

The next few days were filled with our usual Halloween fare. Tailoring costumes, filling goody bags for class parties, school parades and of course, trick-or-treating. I completely forgot that I was waiting for some pretty important test results. 

Halloween Carnival Fun

Taken before we went trick-or-treating at Colma
I was at work when I saw the missed call from the Genetics Department. It was November 1st -- All Souls Day. I immediately called our genetics counselor back, but she didn't pick up. It took her nearly two hours to call me back, but I didn't think anything of it. With Noie and Blaise it took forever to get our results back. I didn't think I was calling her back for test results.

Well, the results came in earlier than expected. 

I was hoping that this phone call would end just like my pregnancies with Noie & Blaise. Surely, I'd have another carrier.  After all, there's a 50% chance that we'd have a carrier, 25% chance of a normal, and 25% chance of a deficient. Why wouldn't I have another carrier? I thought that our seventh baby, our fifth boy, would walk away from the genetic risks unscathed.

I was wrong. God had other plans for us -- for my son.

The rest of the call was a blur. I was at work so I couldn't allow myself to process the news or react emotionally. I still had patients to deal with, so I had to fight back the tears. To say my heart was broken is an understatement. My genetics counselor was very gracious and apologetic. She told me that she would support me in whatever decision I chose to make. Part of a genetic counselor's job is to be familiar with how religious faith can come into play. She gently reminded me that I could choose to have a D&E if that was what worked best for our family. She also sent a consultation to Hematology should we decide to move forward with the pregnancy. Most importantly she reminded me to take care of myself and to know that I was not alone.

I would be lying if I said that I didn't for a millisecond honestly consider discontinuing this pregnancy. 

I've always had genetic testing done for the sole purpose of preparedness -- not as a means to make a decision. I had the tests because I wanted to know -- and wanted to know early -- what preparations our family needed to make "just in case." I got so used to our genetics tests resulting in good news that I wasn't emotionally prepared for the "just in case" to become a reality.

And now there I was in the thick of reality.

I'm Catholic, but I also respect a person's right to choose. However, I will admit that I've always staunchly decided against abortion for myself because I know what I am/am not capable of handling. Hence the seven little lions in my den.

The pain of losing Ethan is too complex to describe in one sitting. But I will say this... it was heart-wrenching to have to make the decision to withdraw care. Even though he was already declared "brain dead" a huge part of me felt like I was "playing God" when I signed the paperwork to withdraw life support. I didn't want to decide -- even if it was just for the sake of legality. I wanted the hospital to tell me that they had to withdraw care. But my friends, that's just not how it works. At 25 years old I had to "choose" to discontinue my son's lifeline. 

I can't make that choice ever again. 

As soon as I got off the phone with our genetics counselor, I called John to tell him the results of the test. We've had it rough this past month with his unexpected job loss and preparing to move, receiving our youngest son's test results was just the icing on the cake from hell. He didn't take the it well and I was still reeling from the news myself. Our discussion was quick and filled with a lot of f-bombs and self-pity. Because seriously, what more can you say other that "Fuck!" when you feel like life is screwing you left and right?  We both did what we do best whenever crisis initially hits -- we cocoon into the isolation of our individual emotions. When our incubation periods are over, we try to emerge with clearer heads. 

Sometimes we succeed, and sometimes we don't. 

Luckily, my best friend works in the same department as me. She came to the rescue and spent her lunch hour listening to me cry, hope, dream, fantasize, hate the world, and exhibit some pretty horrible cynicism. Generally speaking she witnessed me lose my shit. I love her. She was with me through that first storm of emotions. I still had the whole work day ahead of me and somehow I was able to suck it up and survive it. Probably couldn't have done that if I didn't have the opportunity to offload my feelings at that moment.

When I got home that night, we were both still in our cocoons. We tried to talk about it, but it was hard. I did a lot of thinking in bed, cocooning myself into the bed sheets. I thought about what was best for our family and what we are/are not capable of as parents. I thought about what's fair/unfair to the rest of the kids. How could I ever explain losing another sibling to the kids? I thought about how amazing our lives have/have not been having experienced the joy/love/fear/pain that Niki & Ethan brought into our lives. Mostly, I thought about the tiny heartbeat inside of me. I knew that night that I would not be the one to choose if that heartbeat should stop. I was ashamed with myself for even momentarily considering it. 

I know what I am/am not capable of as a mother.  

That night I struggled to define what "suffering" and "selfishness" really means. Those words are heartlessly tossed around quite frequently for parents in situations similar to ours. I thought long and hard about my suffering, my selfishness. My baby's suffering. Ethan's suffering. Annika's suffering. I thought of Niki and how amazing she is and how much she has overcome in just this year alone. I thought of Ethan and the tragedy of his life being cut so short so soon. I thought about my son inside of me. I could protect him now, but not forever. Would he be born into this world only to suffer? Did Ethan suffer? Is Annika suffering? Am I really selfish for continuing to have children who are less than perfect?

I thought a lot, but didn't have concrete answers. Just opinions. And opinions don't count.

Being diagnosed with severe Factor VII Deficiency isn't an automatic death sentence, but it can be. I would be living in denial if I didn't acknowledge that. I know that reality all too well after losing Ethan and especially after Niki's brush with death this year. John and I were told long ago that the severity of our particular mutation isn't supposed to be compatible with life. It's a miracle that our children have been able to live. Regardless of what society may say, they are my miracles and I love them. I will do anything in my power to protect them. 

The truth is, I'm not the strong one in all of this, they are. I'm just their Mom and I leave it all in God's hands. Even though some people may have a different opinion, I know that they have a Higher Power watching over them. God is not allowing my children suffer. He is not making me suffer. 

Most importantly of all, I know that it's not possible to be selfish when things are done for the love of your child.

"Lucky " 10/30/2013

Wednesday, February 27, 2013


Five years ago today was the last time I held you in my arms. Five years ago I was loving you, kissing you, and not wanting to let you go. Five years ago I struggled to find peace in my nightmare.  I havent found peace since that time we spent together in the wee hours of the morning.

Saying goodbye to you was the hardest thing I've ever had to do in my life.

It's been so long that I forgot what it felt like to hold you. I can't remember the feeling of your weight in my arms. It hurts admitting that. Time like this I wish that you would come to me in my dreams. Just fool me into believing you are actually here! Even if it were only for one night. And you havent. And I know you probably don't because you also know that I won't be able to handle what it will feel like when I wake up.

That night, I tried so hard to commit every ounce of you to memory. I was sure that I would never forget the weight of your little body in my arms or what it felt like to kiss the top of your fuzzy head. Love creates miracles and I was sure that my body would instinctively remember you. But too much has happened since then. Too much heartache. Too much pain. All I can remember is how empty my arms have felt without you in them.

I'm missing a part of myself.  I'm missing a piece of my heart. Some days, I can't imagine living the rest of my life like this. Aside from the pain, I have anger. Not anger at God, but anger at this world. And perhaps, to some degree, anger at myself for dropping my guard. I should have been able to help you. I should have trusted my intuition sooner. I failed you.

It was my job to protect you, and I couldn't.

People say I shouldn't blame myself, but only you understand why I blame myself. I can't even put it into words -- there are no words -- but Lord knows why. But I also know that you don't blame me. I also know you served your purpose here. I just don't understand why it had to happen to you, my sweet baby.

The thought of what your little body went through those last moments haunt me.

Did it hurt? Did you know we were there? Were you moving your foot as a sign that you were still around? Did you hear me singing to you? I felt you when you entered the atmosphere. I knew you were gone before they confirmed it. You were around me, but when I left that room it felt like I left you in it.  I haven't felt you since.

What I wouldn't give to feel you again.

God, I miss you.

Tuesday, January 8, 2013

Hello 2013!

Oh that's right, I have a blog! 

Rather than resolving to start blogging consistently in 2013, I've resolved to try my best to blog whenever possible. Or at the very least once a month.. I'm trying to keep things low-pressure for me now thar I'm officially a mama of "five."

Blaise entered our lives on 1/4/13 and I'm still trying to adjust to life with a newborn. Please bare with me as I try to make a comeback to the blog game. ;-)