What Life Means Today

Some years ago, this blog began as a way to stay connected with family and friends while Rob and I embraced our new life in Costa Rica — it was actually called Live Love Travel Souls. I then became pregnant with Lola so I thought I’d blog about the healthcare system in Costa Rica and raising a baby in a foreign country. And then over a course of time, life changed drastically when Lola was diagnosed with infantile spasms (a rare form of epilepsy), cortical visual impairment and global developmental delays. The blog morphed into Say Hola Lola.

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When Lola began to have seizures, countless medical appointments, endless diagnostic testing, a daily regime of medication and therapies to help her get strong both physically and mentally, I scoured the internet for statistical information, any type of data pertaining to the diagnoses she received, and I looked for glimmers of hope that our life would someday be “normal”. There wasn’t a waking moment where I wasn’t thinking about all of the ‘what if’s’ and there wasn’t a second in the day I wasn’t consumed with worry for my daughter. Anti-depressants? Just hand them on over. Anything to mask the fear of all the unknowns. Because the first thing you learn as a parent (special needs or not) — you are not in control.

In the wee hours of the night, I would search the internet trying to find real children who had infantile spasms or CVI. I wanted to know if they were OK, did their seizures subside, did their eyesight get better, did they learn to walk or talk, did they go to school or did they ever say mama? All questions flooding my mind, but could only be asked to Lola’s medical professionals, therapists and my poor husband (who was just as clueless as me) so many times – as if they could look in their magic ball and tell me the future. I found many online forums, but most of the people were in a state of panic just as myself. Parents, grandparents, caregivers and siblings alike – all there for one reason. Hope.

Last day of school

Last day of school

I came across blogs of parents with children with similar diagnoses. A few kept the blogs updated, but most would only post intermittently, if at all. I would write to mothers sharing our story, asking for information and advice. I was surprised by how many didn’t write me back. Didn’t they know how much I needed their response? Didn’t they know I was checking my emails minute by minute waiting to hear their stories of hope? Didn’t they hear the desperation in my email? Didn’t they care? Oh man to go back to that time. I was grasping at anything that could clue me in on how to cope, how to handle the unknowns, how to deal with the blow that my kid may face a challenging life ahead. And now I get it.

Life goes on.

Special needs or not.

Life does become “normal” – it’s just a new normal.

It’s a normal you didn’t plan for when you felt the baby kicking for the first time during your pregnancy. It’s a normal you don’t read about in mainstream baby books. It’s a normal that happens to other families, but not your own. But it did happen to your family, it is your child and you know what? It’s OK. Because life goes on.

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What I’m getting at is that our life may not look like most, but it’s still a good life – a damn good life actually. Sure Lola has her challenges we deal with on a daily basis, sure she takes medication to regulate her seizures, sure we still get stares from people wondering why our kid won’t respond to them when they say hello or ask what her name is, but our life is very much like everyone else’s. It’s just a tweaked version of what I had envisioned, but it’s a life I now embrace and love – it’s a life I am no longer afraid of.

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Being three years into this life, I now understand why blogs weren’t updated, why forums were full of panicked advice seekers and not calm advice givers, and why I never did receive responses from those blogging mothers. You become busy living life instead of trying to predict the future, wrap your head around the reality or control the outcome.

I was once promised there would be a day I would wake up and the first thought in my head wouldn’t be infantile spasms or epilepsy or cortical visual impairment and that promise came true. Now a days I wake up thinking, I hope I prepped the coffee last night, what can I do to entertain my kids today, what day is it anyway? Unless Lola has had a seizure (in which she still does on rare occasion) or if her vision seems off because of weariness, those thoughts will wiggle their way in, but they don’t consume me like they used to. Now don’t get me wrong – I’m not this almighty, worry-free mother. Believe me – I have an occasional bad day too. In moments when I’m physically tired, mentally spent or if some asshole makes a point to critique my daughter’s lack of communication or asks why she won’t look at them, the worries about Lola’s future show up with vengeance. And that’s OK too. I’m allowed to have those worries. I wouldn’t be a good mom if I didn’t have them. Any parent worries about their kids future – it’s part of the job description. But I remind myself I can only live for today, I can’t change what happened yesterday, and I can’t control what will be tomorrow. I can embrace her hugs, I can applaud her progress, I can help guide her to the next step and I can smother her with kisses, comfort and unconditional love. I can be the mother I was supposed to be for her, in fact, I am that mother.

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Three years ago, I would have questioned if I was up for the challenge. I take that back, it wasn’t the challenge I worried about – it was if I could be good enough for her. Could I weather the storms with confidence, determination and grace? In moments when I’m just as scared, could I be strong for her? Well folks, I’m here to tell you I know I am that mother for Lola. And Sebastian too. It took encountering some tough times, it took allowing myself to grieve and cry and ask God why Lola, but Lola’s fine. I’m fine. Lola’s a happy, healthy and ridiculously charming little girl. I’m so very proud of her and all of her accomplishments. Truth be told – I’m proud of myself too.

OK, long winded.

I’m so sorry.

Our absence on this blog equals we’re living a busy, normal life. So far this summer Lola finished up her first year of preschool, she started Day Camp at the YMCA, we had the pleasure of having my mom visit for a month (and man did she make life easier!), Sebastian is developing at a miraculous speed, Rob and I actually went on a lunch date, my mom and I bravely took the kids on a five day road trip to Michigan to see family and friends, I started working part-time at the most fulfilling job while Sebastian gets taken care of by a wonderful woman, and life is just good. Busy and wondrous, challenging and rewarding, chaotic yet calming – our life is good.

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My Michigan people

My Michigan people

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I will always stay committed to Say Hola Lola as Lola has gone on to inspire so many people from around the world. I want to offer the hope I so badly sought out when I was in the beginning trenches of raising a child with special needs. But I can’t promise weekly or even bi-weekly posts. It may be a once a month check in to say hello and give a few updates on the girl and our life. In all honesty, I feel like nothing “newsworthy” goes on most days. Lola does something new and awesome every day and in my own mind, I’m cheering her on. But you all don’t want to hear about how Lola navigated around a book last night using her vision rather than slipping and falling on it because she didn’t see it. I mean it is newsworthy in our world, but it’s just life. Our less than perfect yet insanely fulfilling life to two beautiful, bright, inspiring and crazy children.

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You can always follow Say Hola Lola on Facebook and Instagram for regular updates. And I promise if you write, I will try my best to respond. I hope you all are having a great summer!

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