Sunday 27 September 2015

I had published an article for the website "The Mighty"

Then I was feeling motivated and wrote another piece but it's a little more personal.

Why I am no longer the person I used to be...

It's been just over three months since both of my sweet baby girl twins were diagnosed with type one SMA and I've quickly come to the realization that I am a completely different person than I was before. I've found strengths within myself that I didn't know existed but lost a piece of the person that other people enjoy.

I've always been a very positive, upbeat, and optimistic person. The type of person who never had any problems making friends, enjoyed getting to know people, and just loved being social. When we first got the news, I wanted to completely shut myself off from the world. But I slowly let just my close friends and family back in. Many people tried reaching out and helping but I didn't respond. I figured, "They didn't have the cure, so how can they help?" It was easier for me. The less people I had to face, the better. It's hard to always put on a happy face when that couldn't be further from the truth. It's hard to be around people who don't have the slightest idea of what you're going through. Not that I'd wish it upon anyone, but there is huge comfort in surrounding oneself with people who are going through or have gone through similar journeys.

And babies. I have always loved babies, always wanted to be a mom. It's why I chose obstetrics as my area of specialty in nursing. Now I find it extremely difficult being around babies. To the point that it gives me anxiety. Seeing other babies strength next to our girls is heartwrenching (I once cried for hours when a month-old baby was placed next to them). I feel foolish for not spotting the signs earlier. I feel sad that the girls can't do what their peers can. But most of all, I feel ripped off that our poor girls have this horrific disease to which there is currently no cure. Even pregnancy announcements and pictures are hard on me. Not because I want another baby right now, but because it brings me back to a time where I felt sheer joy and excitement (like the moms to be are feeling). They deserve those feelings, don't get me wrong. I got to experience that once upon a time. So I plaster on a fake smile and a "congratulations" and erase the whole thing from my mind. I hate being "this person" but this hard life has made me this way.

I'm a skeptic now. I used to be that person who believed that everything would work out. That the single friend would find true love. The infertile friend would get to be a mother one day. That good things happen to good people. I don't feel that way anymore. Bad things happen to good people ALL the time. Some people will never find "the one" and many women will never conceive for what ever reason. Life is just unfair.

One reading this article might find it negative or anger-fueled. That is not my intention at all. I truly DO feel happy a lot of the time but it's so much different than it used to be. I used to be naive and trusting of the world in general. That the universe had this big plan for me. I don't feel that way anymore. I feel that unfortunate things happen and we must navigate through them in the best way we know possible. I am not and will never be the "old Melissa".

Our Story

My name is Melissa. I'm 26 years old, live in Canada, am a wife and mother to two very special little girls. This is our story...

Dan and I met in 2008 through mutual friends. At that time, we were both looking to have a good time, not really interested in a relationship. However, we fell in love and got married in 2012.

We are both family-oriented people so it was not a surprise that we decided to try and start a family. On June 11, 2014, I found out I was pregnant- it was SUCH a happy day. We went for a celebratory dinner and even told a few close friends and family members. I knew there was a risk of miscarriage of course, but we were ecstatic and couldn't keep it inside for very long. We found out a few short weeks later that we would be having twins. I wanted to keep that part private until after the first trimester, as I know a twin pregnancy is more risky than the average pregnancy. But both babies held on tight and I ended up taking them to full-term. I couldn't believe it!

At 37 weeks and 6 days, we welcomed two sweet baby girls into our lives. Addison Lorraine was born at 5:58 pm and weighing 5 lbs 8 oz, followed shortly by Emma Victoria at 6:00pm and weighing 6 lbs 6oz. They were a scheduled c-section, as Addison was breech and Emma transverse. There just was no room for them so they assumed funny positions. Having a baby sitting sideways in your ribcage is SUPER uncomfortable but I never wished away any part of my pregnancy. I was just so grateful. And so happy.

Things were seemingly normal with both girls and we were discharged from the hospital two days later. Life with twins was CRAZY. Most nights I was up throughout the night and if one was happy the other was fussing. I didn't even bother with breastfeeding- I know it is possible but WOW. Those moms deserve a medal. As sleep deprived as I was, I didn't wish any bit of it away.

It was around the two month mark that things became concerning. Our sweet Emma was having problems eating and was just overall very "weak". Her core felt like you could bend her in half. I remember Dan once referring to her as a "limp noodle". It wasn't far from the truth. I think a huge part of me was in denial but the voice in the back of my mind told me something wasn't quite right. Our doctor didn't have any major concerns either which was a false sense of reassurance for me. So we let things go for another month with things only worsening. At just over three months of age, Emma stopped eating completely. I knew that I was getting nowhere with our general practitioner so I took her into the emergency department. The drive there was filled with nerves because I just knew they were going to find something major wrong with her. And that they did.

The doctor in emergency was quick to spot a HUGE problem. I remember him noticing her cry (which was more like a whine) and asking if she always had a weak cry like that. Since I didn't know any better, her crying furiously was still very weak compared to other babies. He checked for reflexes and couldn't find them, which indicates that it's a neuromuscular problem. Neurology was quickly consulted, as was genetics. The genetic counsellor asked all kinds of questions about our family history, including if there was a chance that Dan and I could be related. Since we have no family history of anything bizarre, I was quick to dismiss the whole thing. Later that afternoon, the geneticist came into the hospital room and told me three things that he thought it could be. The third thing he talked about was a disease called Spinal Muscular Atrophy (SMA).

SMA is a genetic condition that both parents are carriers for. It's autosomal recessive, so both parents must be carriers in order to have an affected child. There is a 25% chance of having an affected child per pregnancy. But if one parent is a carrier, each child has a 50% chance of being a carrier themself. 1 in 35 Caucasians are carriers. SMA causes progressive loss of muscle function and eventually leads to the inability to eat and breathe. It is terminal. He believed that Emma had the most severe form.  I asked if she would be in a wheelchair. He said no, that she'd never be able to sit up and would likely die in 1-2 years.

After speaking with the geneticist, I did a quick Google search of SMA and wished that I hadn't. Emma had every one of the symptoms and it was just plain terrifying. That and the fact that Addison also had most of the symptoms as well. Imagine every single plan you'd had for the rest of your life blowing up like a bomb. Your life is just a cloud of smoke because someone had just crushed it (and you). I have never experienced any feeling like that and wouldn't wish it upon my worst enemy.

We needed to deal with the immediate issues first, and that was to get a feeding tube for Emma. She had an NG inserted for feeding and all of her feeds would now be done that way. Her oxygen levels were dipping throughout the night so she got oxygen for that (which we later learned is a big no-no. Thank goodness for support groups because doctors really do NOT know everything). Lastly, the diagnosis needed to be confirmed via a simple blood test. The test was sent away and about a week and a half later came back positive. As did Addison's.

This all happened in June. Just under a year later than one of the happiest moments of our lives. I still have trouble comprehending at times that this is our life. All I ever wanted to do was be a wife and mother and thought my dreams were coming true. Only to discover that the nightmare was just beginning. It's hard to be happy for other people because I feel like that should be us. We should be enjoying our lives. Instead, we are trying to take things day by day and fearing a grim possibility that we could lose one or both of the girls at any point in time. But today, they are here and we are enjoying them. And that's what we must focus on.