Friday, January 23, 2015

“We’re all human, aren’t we? Every human life is worth the same, and worth saving.” – J.K. Rowling


First off, J.K. Rowling is a boss. 

Secondly, this is a topic I've wanted to write about, but wasn't sure when was the "right time." With yesterday marking the March for Life, it seemed an appropriate time to broach the subject. 

As I mentioned in a previous post, the day we received the news of Brody's diagnosis, I got three phone calls I never fathomed receiving: each one from a different member of my new medical team offering me an expedited abortion within the next week if I so desired. How was it that I went from receiving such great news-it's a boy!- to suddenly having three offers in 24 hours to "take care of things?" This was never a consideration for us, but also never a position we could have imagined ourselves in. Wasn't this for unwed mothers of multiple children, teenage girls not prepared for motherhood, or victims of rape? Or at least that's what the media likes us to think as they vehemently defend the "right" for abortion. How could this be for us, just because our situation wasn't what we had pictured? How did his life not matter now, because he has a condition that would be undesirable to many? 

Earlier in my pregnancy, I had read a story of a young couple also expecting their first child who was unfortunately diagnosed with anencephaly. Instead of hiding their story, they decided to honor their son's life. They made a bucket list, and spent the remainder of their pregnancy documenting all the adventures they set out to do in their son's honor. I followed their story before receiving our own news, and thought about how I didn't think I could find happiness in such a depressing time if I were in their shoes. Little did I know how much their story would mean to me just a few weeks later. 

Our initial visit with our specialist ruled out (to the best of their ability), a lethal form of dwarfism. We were beyond thankful for this news. But the seed had already been planted. Even if he were to have a fatal form, should his life be any less celebrated? Even though we opted not to terminate, would we still be honoring Brody by not talking about him, just because the situation isn't the norm? What if he didn't make it, and I never shared news about him, because it was just too hard to talk about? We hadn't even told many people beyond close family and friends we were expecting prior to 20 weeks. Suddenly, I didn't want to keep things under wraps; I wanted Brody's life to be known and honored. If the couple I mentioned could find happiness in their situation (given a much worse prognosis), certainly we could too. 

Prior to this I had been adamantly opposed maternity pictures. Bare bellied women staring off into the distance while standing in a field aren't tasteful in my opinion, and this was the tacky visual I got when thinking of maternity photos. But now my thoughts had changed.  What if I didn't document this time with him? What if I only ever had a few pictures of  Brody? I decided ask our neighbor Ashley to take some photos of us to use on Christmas cards. Nothing over the top, but I something I would always have. (And for the record, we both remained fully clothed). 

Next, Mike got to work on the blog. Frankly, it's in part to help share our story with friends and family so we aren't telling everyone updates 30 times a day. But it became something else. It's another way to share Brody's story; to have documentation of his existence. And through sharing our story, we have "met" so many people with similar stories (through the joys of the internet). It's been amazing how people who otherwise would have been total strangers have become lifelines. Many strangers have reached out, more so even than most our own family members, and been able to empathize in a way others can't who haven't been in the same situation. 

Most of this change in heart, for me at least, was going on over the holidays. I suddenly found seemingly simple tasks nearly impossible to finish. I set out to find the perfect stocking for Brody. While standing in aisles at Hobby Lobby, I would debate for hours over what kind of stocking to get. Mostly, I wanted to find something that would always be his. Here I should be overjoyed to be preparing for our new baby, and all I could think about was how I couldn't get a stocking that said "Baby's First Christmas" because what if he wasn't here next year? What if this was the only Christmas I had with him? I wanted something that could be hung every year, that would always be his, and could never be mistaken for a future child's possession. My search proved less than successful, and eventually I gave up and got a stocking with a 'B' bedazzled on it. I exhausted every Christmas aisle, in basically every story in Wichita searing for something with a 'B' on it. I may or may not thrown stockings in Target while frantically looking for one with his initial on it, all to no avail. I made him a silent promise that if he were here next year, I would get him a much less flamboyant stocking more fitting for a boy, but that was the best I could do this year. Christmas cards proved to be the same challenge. Had we not received the news, I wouldn't have plastered his name all over Christmas cards. We had initially thought about keeping a name between us until he was born. But again, I found myself wondering what if I didn't include his name this year, and next year he wasn't here? And then should I ever include it? After a lengthy internal debate in the Walmart photo department, I opted to put his name on the cards. This seemed to be in keeping with what I had decided: Brody will be included in our family, no matter what, for whatever time we have, starting now. 

The week of Christmas also marked the beginning of my third trimester, and the start of my weekly visits. My doctors apologized for the multiple appointments, stating they knew how busy we were with everything going on. These ultrasounds have become the highlight of my week. For other people, they may be an inconvenience to fit in weekly (and usually on a Tuesday morning after I've been on call Monday nights, no less), but for me they have become the highlight of my week. Each Tuesday we get to watch him kicking and moving, and thankfully, each week these have gone well. While we pray they continue to show a healthy baby, each week I also have to mentally prepare myself that everything may not look ok. Needless to say, each time I see his heartbeat and him move, I have an overwhelming wave of relief. I have a small portfolio of this kid's photos from the amount of ultrasounds we have had, but I'm grateful for them. 

The point of all this, is not to convince others to become pro-life. The fact that a life is not considered valuable or worth defending to so many people is disheartening to say the least. But for us, it has only solidified beliefs we already shared: life is precious, it is a gift, it is not ours to disregard because it may not be what we had pictured. And while we always felt this way, I can't say we were as passionate about it until it directly affected us. While we are hopefully in cruise mode until he arrives, there are still many uncertainties. We still have no idea what specific skeletal dysplasia he has. We don't know what his health concerns will be, or what our future looks like. I wish I could say this wasn't our path, because I know Brody will face challenges most others won't due to his stature. But I know the lessons he has already taught us are just beginning. He has given us a new perspective on life. Things that seemed to be big issues before now no longer matter. Daily hassles and frustrations don't bother me as much as they would have 4 months ago. And most importantly, we are more thankful for each day we have with each other, and for our health. I doubt I will ever see Roe v. Wade overturned in my lifetime, but I know that for us, a life that may be considered insignificant to many, has forever changed ours. And if maybe more people were willing to share their stories, perhaps others finding themselves in similar situations may find the value in life, no matter how small. 

4 comments:

  1. Marcella- beautifully written blog post. Not sure if you are familiar with my story but I found out about Lyla at 36 weeks pregnant and like you was told she did not have a lethal form of dwarfism. My doctors said it looked like Achondroplasia but they couldn't be certain till she was born. Our situation is somewhat similar to yours. I can tell you because I've been down this road ahead of you that my daughter has taught me how much MOTHERS love their children. A mother will love her child NO MATTER WHAT. Do not worry about Brody... No matter what kind of dwarfism he has he will be fine and so will you. You and your husband have already done your research, met others in your situation, and you both are ready to raise him to the best of your ability. In my opinion that's the first sign of everything will be ok and that the two of you are solid. When we found out about Lyla my husband said to me, " I'm not worried because she has the two of us and we are the ultimate team!" I held on to those words for four weeks! Could my husband be wrong I thought? Are we the ultimate team? Guess what...., we are the best f$&king team ever! My husband was right. Our Lyla is perfect, our lives are perfect and we have the best family! So my point is that you guys will also be the ultimate team! ( I can tell from your blog posts) Enjoy the rest of your pregnancy and besides I have a feeling he is an Achon and if he is....he will be AMAZING!

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  2. Thanks for following. Yes, I actually found hour blog the week we found out our news. Since then we created our Instagram and started following on there. Your family is beautiful and both girls are darling. It's so reassuring to see dairies of healthy LP kids, and it appears Lyla is! Thanks for reaching out

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  3. Your welcome! And yes she is HEALTHLY but what most people don't know is most Achons are... HEALTHLY....A fact from the great Dr. Bober. The reason we see so many Achons getting surgery and having problems is because they are seen by doctors that are NOT skeletal dysplasia experts. Some doctors will say that they have experience with Achondroplasia but having experience and being an EXPERT are two different things. So remember that when Brody is born. Lyla has only had a sleep study at 8 weeks old and ear tubes (she's on her fourth pair). That's because as children grow the tubes fall out. It's common in ALL kids. She has never had an MRI or anything like that because it was never necessary. Feel free to contact me anytime if you have any questions.

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