Gimme a Break

Sorry for the silence lately. I’ve been in a little bit of a funk. And, to top it all off, my laptop crashed suddenly, which is enough to make anybody crazy. It occurred to me today that writing about it might help me feel better. Plus, when I started this blog, I made a promise to myself that I would write about the lows with as much openness and honesty as the highs. If I’m going to write, I’m not going to worry about presenting a perfect portrayal of myself. 

Some days are hard for me. Just plain hard. Some days, like today, take every ounce of energy I have just to make it through. Heck, just getting out of bed is hard. Today, I rolled out of bed, and made my way straight for the couch. I woke up knowing instantly that it was going to be one of those days. Except for doing things that couldn’t be avoided -- Liam’s catheters, changing diapers, and making meals -- I clung to my spot on the couch. When Liam finally got annoyed with me, I rolled off the couch and stayed curled up in a ball on the living room floor. He spent most of the afternoon using me as a jungle gym. By 4 o’clock, I gathered enough energy to finally start the day.

For as long as I can remember, I’ve dealt with anxiety and depression; though, I don’t typically use the word depression, because it makes me uncomfortable. It feels too harsh. Too serious. Too clinical. I prefer to simply think in terms of good days and bad days. Typically, I have a couple bad days a month. Before I became a mom, I would just go with them. I would let myself experience the bad days with the full knowledge that I would be back to my normal self again soon. I used to give myself a break. But now, as a stay-at-home Mom, I deal with a level of guilt that didn’t exist before. Now, I feel bad for needing a break. I feel guilty. I worry that as an adult Liam might remember me on days like this. He might remember the days when I wasn’t fully present. That guilt is ten times worse than the bad day itself.

My husband gave me some good advice today. He said, “Why don’t you just let yourself have a bad day when you feel like this? I get burned-out at work all the time. You have a full-time job. Of course you’re going to feel like this occasionally.” You know what? He’s right. (Did you hear that husband? I said you’re right. Don’t get used to it). 

I think that as women, and especially as mothers, we don’t always give ourselves the same consideration that we so often give to others in our lives. We give others the benefit of the doubt. We give them a break. We allow them to be flawed without thinking less of them. I, for one, am going to start giving myself that same consideration. I’m going to stop being so hard on myself. I’m going to make an effort to love myself in spite of my imperfections. When I feel like I’m drowning, I’m going to give myself a chance to breathe. When it all becomes a little too much, I'm going to give myself a break. I hope you will do the same.

On Reflection: Anger

One thing I know about anger is that it permeates every area of one’s life. There is no compartmentalizing anger. No wrapping it up in sparkly boxes with pretty pink bows and stuffing it way down deep inside (this method has characteristically been my coping mechanism for life’s uncomfortable issues). Anger festers. It cannot be contained.

When we received the news that Liam was going to be born with spina bifida, I was seething. I mean SEETHING. I was so full of rage that my body was actually sore. Even my teeth hurt. For years I had watched other women -- women who didn’t take care of themselves during pregnancies -- give birth to perfectly healthy children. I felt it was unfair. It was more than unfair; it was unjust. I had done what I was supposed to do, and my baby was going to be born with a birth defect. I felt like there was some conspiracy against me. Although, truth be told, the anger was somewhat easier to deal with than the grief that hit me initially. But that grief inevitably turned to rage.

About a month after receiving the diagnosis, a co-worker was telling me about a pregnant friend of hers who had gone for a routine ultrasound. During that ultrasound, there was some issue with the baby’s heart, which prompted their doctor to send them to a specialist -- much in the same way that we had been sent to a specialist. It turned out that their baby was perfectly fine; the heart monitor used during the first ultrasound had simply malfunctioned. It was a fluke. But do you know what I felt hearing her say that? I felt angry. I’m ashamed to admit it, but I was angry. I was angry that we had gone to a specialist and received bad news, and they didn’t. I was angry that our specialist had said, typically we don’t find anything, but in this case we’ve found some deformities. I was angry that their baby was ok. I was angry that my baby was sick. As these thoughts were racing through my mind, something happened. Something that will stay with me for the rest of my life. A voice in my head said:

Really, Brigid? Really? This is who you’re going to be now? A person who wishes illnesses on unborn children? Really? This is who you want to be?

With that string of questions, my anger vanished. It completely disappeared. It was one of the defining moments of my life. I can pinpoint it as the exact moment when my anger turned to acceptance. My new mantra became It is what it is. I realized there was nothing I could do to change the diagnosis, so I made a conscious decision to stop wasting precious energy fighting against it.

That decision changed the course of our lives. I knew that my anger wouldn’t serve a purpose – not a positive one anyway. I truly believe that Liam would be a different person had I not caught myself at that moment -- caught myself and made a choice about the person I was going to be, about the mother I was going to be.

Now, of course, I am thankful that Liam came to us. It is the thing I am most grateful for in my life. There isn’t a day that goes by that I don’t look at him and think: I am so thankful you came to us. I am so glad you were born in the United States. I am so glad you were born in the 21^st century, a time when spina bifida isn’t a death sentence. I am so glad you came to an independent Mama who was somehow able to handle it all. So thankful you came to a Daddy who never once complained that his son was going to be different -- a Daddy who always seemed to know that you were your own person. A Daddy who always had the knowledge that playing sports or walking without assistance or living without a wheelchair wouldn’t define you as a man.

I think about some of the men in my own family, who would’ve felt slighted having a child with special needs, who would’ve viewed it as a negative reflection of themselves; men whose egos were always too much in control of their lives. I think about those women I was angry with and envious of, and it is so clear to me now that they, most likely, wouldn’t have been able to handle it like we could. I now understand why Liam came to us, and not one of them, and I am so grateful. So grateful. There are some things you simply can’t understand while still in the midst of them.

Step by Step: Mommy's Letter to Liam

9.27.12

You did it. You finally did it! We have been waiting for this day for over three years. Three years! Three and a half years since those gut-wrenching words were uttered, words that changed everything: we’ve found some deformities. Today, what seemed like just an ordinary Thursday, you did something we once thought was impossible: you took your first steps.

Step by step we’ve made our way on this journey together – this journey that began almost four years ago, with a very anxious soon-to-be Mama staring in disbelief at a screaming YES glaring back at her. Almost four years ago since making that very long-distance phone call to Daddy saying, I have to tell you something, but I’m not going to be able to say the words out loud. Just one month shy of your third birthday, and you did it.

My heart was so full tonight that my body simply couldn’t take it. As I lay in bed, I heaved and heaved thinking about the gravity of what you had accomplished. I sobbed reflecting back on those first few months after receiving the diagnosis, when I couldn’t even look at a little boy on a bicycle, or a baby standing on his wobbly, little legs without feeling a tightening in my chest. Without feeling like I was suffocating. Guilt at that time was a tangible thing. Anger was palpable. My body had betrayed me.

It wasn’t until first stepping foot in the spina bifida clinic, when you were three weeks old, that I truly realized the severity of what spina bifida and hydrocephalus meant: wheelchairs and braces and catheters and shunts and surgeries. All of the books and articles I had read during the second part of my pregnancy couldn’t have prepared me for what met me that day: spina bifida at every age. It was like your entire life flashed right before my very eyes. I felt the wind knocked out of me walking into the clinic that day. Your Auntie Maura somehow sensed what I was feeling, and simply sat quietly next to me, while I tried to catch my breath before making my way to the front desk. But I didn’t know then what I know now.

And now here you are, standing on your own two wobbly legs. And here I am, knowing what I didn’t know then: that you are absolutely, positively who you were meant to be. You are perfect and bright and magical. You are an old soul in a young body. You have taught me and Daddy and our family more than we could have ever learned without you in our lives. Do you know that when your cousins play house one of them pretends to be a kid with spina bifida? Yep. It’s true. You have made clubbed feet and braces and shunts normal, which in turn has taught them to accept other kids who are different from themselves. You have changed the definition of disabled for us. Spina bifida doesn’t define you, it’s a part of you. Just another facet of the remarkable human being that you are. It has been a long three years, filled with therapy and doctor appointments and surgeries, but you did it, my angel baby. You did it.

Note: I tried multiple times to record a video of Liam walking, but he refused to walk while the camera was rolling. I’ll post a video as soon as he decides to cooperate!

***Update: I was finally able to get a video of Liam walking. He typically moves a bit faster and takes larger strides, but tends to get a little camera shy the second I hit Record. He has made even more progress, since taking his first steps back in September. When he first started walking, I had to hang on to the back of his RGO*, in order to help support him, and now he is able to rely completely on his walker to balance himself. He has also been standing between couches and taking small steps, without wearing his RGO. We are so proud of our Liam!
*Reciprocating Gait Orthosis -- the leg brace he wears that helps support him as he walks.
Click here for video of Liam walking!

7 Things You Should Know About Me

1. I am a stay-at-home Mama to the world’s most magical little boy -- a little boy who was born with Spina Bifida and Hydrocephalus.

2. My husband and I were married at a drive-thru chapel in Las Vegas. I fall more in love with him every day (well, almost every day). 

3. I am a feminist. 

4. I love any and all things “girly”: sequins, sparkles, make-up, shoes, the color pink.

5. I have a Master’s Degree in Literary Studies, and I am currently working towards getting my TESOL Certification (Teaching English to Speakers of Other Languages), so that I can start private tutoring from my home. 

6. I love to travel; I am the person I am today because of the time I spent in South Africa. 

7. I am originally from Chicago, became an adult in Charleston IL, and currently live in Kuwait.