I'm a happy person most days. I've been told that I'm optimistic, but I get frustrated and angry too. And about 9 years ago, I used to get my feelings hurt a lot.
Nearly 10 years ago, Samantha was born. We knew at 20 weeks gestation that she was not developing properly. This, we knew. We knew her head was too small. We knew there were some major concerns with this. We knew that it wasn't "normal" to have a head that was too small and we knew it wasn't "normal" to be monitored weekly by doctors for the last 17 weeks of pregnancy. But we also knew, through blood work, that though they didn't know what the problem was; they no longer thought it was life threatening. Our baby had a good chance of living through the pregnancy.
We did a lot of internet research. "Small gestational head circumference." Google can be great, but can't it also just break your heart? I spent hours looking at different websites, trying to find out as much as I could about the unknown. It's quite challenging by the way. But among the things we knew was the fact that she had microcephaly -- micro (small) cephaly (head). During my pregnancy, though, I felt such peace. I felt a true sense of "It'll be ok." I took that to believe her head would be fine. Miracles happen. Some people would have called it denial. I called it faith.
They induced me early and had a team from the NICU ready to whisk her away. She came so quickly...and after 3 pushes (it helps having a small head), she came out screaming to the world. She was healthy, but small, and she was able to stay with us. No NICU needed.
Three months later we went to a geneticist at Primary Children's Medical Center in Salt Lake City, UT. She received the diagnosis of Primary Autosommal Recessive Microcephaly -- there was no genetic test to confirm it, but she fit the bill (though I had my own feelings that wasn't her true diagnosis -- but what did I know?). We were told it was extremely rare and that they couldn't tell us much. She did print off some things she found on it, and sent us home. Back to what I knew: I knew my daughter had a small head. I knew she was "healthy." I knew I knew it was going to be ok. And now, I knew she had this diagnosis. Things didn't compute. But it was ok...because things were going to be ok.
It wasn't until about 3 months later that I thought, "Things are NOT going to be ok." We were doing therapies and she wasn't progressing like the many other babies in our church group. People were staring at us in the store. Some asked questions that made me go to my car and cry -- "What's wrong with her?" Those words were so hurtful. I wanted to shake them and scream, "Nothing is WRONG with her. She's a beautiful little baby girl who happens to have a small brain. [insert insult here.]" I know, real mature. But I never said or did those things. I'd just answer their questions politely, "oh she was born with a genetic condition." Or if I didn't feel up to it, "She's just small. My itty bitty girl." And smile as I'd try to hide the tears. My emotions were very close to the surface as I was realizing that things weren't ok...little did I know they'd get worse...and I was feeling so extremely overwhelmed.
It was then I decided I couldn't live my life this way. I decided to change. What I felt before...that it was going to be ok, was true. It was going to be ok. Maybe not how everyone else thought, or how I had initially interpreted my feelings, but it was going to be just how my Heavenly Father wanted it to be. Samantha was sent to our family, the way she was, for a reason. Maybe just to increase my own faith, or the faith of those around her. I decided to be strong, and to be the mother that Sammy needed me to be. I also realized that people can be insensitive without meaning to be. They are curious, and I didn't want to discourage people from asking questions. I wanted to educate them. After all, if what Samantha has is so rare, what an opportunity for people to learn how this amazing little girl with such a small brain can be. Instead of just loving her and wanting to protect her, I wanted all to know her. I was proud of this special little girl. Unique. Brave. Determined. Beautiful. Mine. As I d e c i d e d to give people the benefit of the doubt, my own attitude about Samantha and my sadness for her changed.
A month later, life became more hectic and I was so glad that I had changed my attitude before we began the life of seizures, surgeries, and sleepless nights. Samantha is an angel. She really is. She is the sunshine in our day. She's tough at times, sure. But she is such a delight. The day she was born, I sat on the bed holding her in my arms, tears streaming down my face after a doctor had just given us a prognosis for her life. Marcus leaned in, and with his arm around us said, "One day, we'll look back and will say 'we wouldn't have it any other way.'" He's right. It took some time, but today, I can say that most of the time that is how I feel. I see how much she has changed us. She is quite the star at the local grocery store. They all know her. Before we moved, she regularly got suckers and stickers from the workers at the stores. She has a magical power over most everyone she meets.
Years have passed. Samantha has progressed far beyond what was expected. And she continues to progress. Her progress is different from her sister's. Callie is playing soccer, drawing pictures, loving to read books, etc. Callie is bright and fun and crazy! Samantha is all those things too, just in a different way. Sammy is walking better, using her hands to feed herself better, and standing straighter on her own. That's incredible. I have pretty awesome kids.
Last year, something came up that we wanted to investigate. Seckel Syndrome was brought to our attention, and we decided to meet with a geneticist to find out if Samantha fit this profile to see if she actually HAD Seckel Syndrome. I didn't need a clear diagnosis to make myself feel better about her. I needed a diagnosis to know if we needed to watch out for cancer down the road (which is common with Seckel Syndrome)...if we needed to be on top of blood work annually or whatnot. After months of the geneticist studying Samantha's clinical profile as well as MRIs and a fully body x-ray, and contacting the best in the field...a new diagnosis was given. Even rarer: Microcephaly with Simplified Gyral Patterns Type 1. It's too new of a title/label/diagnosis and there aren't that many people to compare her with. As far as I'm concerned, and as far as her doctors are concerned, Samantha's her own little person. What will she do? What will she accomplish? She'll just have to show us. In a way, I think I'm glad that they don't know what lies ahead for her. She can freely chart her own course ~ and she already has. I'm just fully glad that she has chosen us as her travel companions. This girl...she's a gem.
I don't get my feelings hurt anymore. It's not because I'm invincible, it's because no one has the power to make me feel bad about Samantha anymore. Yes, sometimes I get protective, and I have been known to address a child and try to gently redirect their thoughts and/or language about Sammy. But, I'd do that for any of my kids. I don't defend her because she's different and needs extra help...I do it because she's mine.
I used to mourn my lost dream...all the hopes and dreams I had for her...but I don't anymore. She's given me a new dream. She's altered my own course of life. She's given me a far better life (though possibly more physically, emotionally, mentally, and spiritually taxing than I had ever imagined!) than I could have planned for myself. I'm not sure I'll ever be able to express my deep love and gratitude for her.
I thank my Father in Heaven for her every. single. day.
February 18, 2016