Day 20 – May 17th, 2011

Lola has now figured out how to take her pacifier out of her mouth with her hands, but then she desperately wants someone to put it back in. You’ll learn soon enough, my love. Today has been good. Lola has not had a seizure since yesterday which is a hopeful sign. I broke down and called the doctor’s office and asked his secretary why he hadn’t responded to my emails (maybe because he has at least 100 from me alone…just kidding….uh not really.). Turns out the Internet has been down. He was supposed to call at 6:30 pm for a check-in…it’s now 7:30 pm and no call yet. I really need to work on this whole patience thing. It’s starting to get the best of me, but damn I have so many questions to ask. Perhaps I’ll go do something, like get ready for bed (yes I am that lame and more importantly that tired!) and then he’ll call. We’ll see. G’night peeps!

Little did we know, but May 17th, 2011 would be the last time Lola would have seizures. Well, except for that tiny cluster she had in October due to the heat. But in our world, today is an anniversary of a very special day. It’s not an anniversary we ever dreamed of having, but life seems to always throw unexpected curve balls when you least expect it. A year without seizures though. I cry just saying it. A year without seizures. Even though its been a year, I still find I am on the lookout. The neurologist told us they could come in various forms now which makes me extremely hypersensitive to tiny, unfamiliar movements. While I know the seizures wouldn’t be as devastating to Lola’s brain now as they once were, they still scare the hell out of me. But I know I’m not alone. My other infantile spasm mom friends share that same uneasy feeling. We watched the seizures take the light out of our children which is something no parent should ever have to witness. Yet when the seizures stop, the dark clouds part and the sun begins to radiate once again.

One year ago the seizures stopped.

One year ago Lola’s smile returned.

One year ago the light within began to shine once again.

One year ago we got our Lola back.

Happy Anniversary to our family!

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Well, you don’t hear often from me on this blog. But since I am Meredith’s husband (and Lola’s dad), I wanted to take a few minutes and wish my wife a very Happy Mother’s Day! I haven’t logged into the site (the behind-the-scenes system) for such a long time because Meredith does such a great job managing and organizing this site. In fact, it kind of intimidates me (and makes me proud) to see how well she has her categories organized, how she cross-references her links, and . . . oh, I’m getting a little geeky (it must have rubbed off on her a little.)

Anyway, I am writing to wish my beautiful wife a Happy Mother’s Day. Seeing as she blogs about most details of our life with Lola, I thought I should share a little more about her with the rest of you who follow Lola and her progress. As our life has gone through many changes over the past few years, I can’t help but feel a burgeoning pride and overwhelming love for Meredith. I was never hesitant to spend my life with her, but every day I am with her just shows me how much of a great decision I made to decide to ask her to be my wife. And when you think that feeling can’t feel the least bit stronger – that you’ve exhausted the depths of that well – you go and have a child and your heart opens up a thousand-fold. And so has my love for Meredith.

There are the small things in a relationship that only those two can share and enjoy. It’s in those moments where my heart grows and deepens with a tremendous amount of respect and admiration for Meredith. It’s the minor things, like how easily Meredith can soothe Lola with a simple whisper. Or how just her presence in a room can calm not only Lola, but bumbling old me trying to be the best Dad I can be with no clue in the world how to be so. But it’s more than just those things. Meredith just is. She is thoughtful, positive, uplifting, graceful (even in her clumsiness – which she has somehow passed to me), and she is simply the most beautiful person I have ever met.

Every single day I feel blessed that she is still here with me. She is the most amazing mother, no matter how much she walks this path blindly, never having been a mother before and even so, not knowing the difficulties she would face in helping her daughter get a firm grasp of this world. And even when faced with the difficult realities with Lola, she didn’t wallow in it. Instead, she came to me and talked about how we could help others. How we could begin to share with others our experiences and knowledge so that other mothers wouldn’t be quite as lost. And, to me, that is the most selfless and admirable part of Meredith. She embodies love and in turn defines what being a mother truly is – pure love.

I won’t take too much more valuable space on this website, but I will say to all the mothers out there who come to this blog to share, find answers, or simply follow our daughter’s life – Happy Mother’s Day! And to Meredith, I want to simply say that I love you for being you. You have truly made this a life worth living, and for that I thank you. Happy Mother’s Day my beautiful wife!

 

On Wednesday, Rob, Lola and I headed downtown to the Indianapolis Zoo. It was cloudy and a bit chilly, but I was ecstatic to go as I love zoos. Lola’s reaction was as I would have guessed…unfazed. As much as her vision is getting better, distance is still difficult making the animals hard for her to see. Yet we enjoyed spending the day together as a family.

Lola loved the blue arena where the dolphin show took place.

First train ride.

I know I'm perverted, but I couldn't help it!

As an added bonus, you receive a free admission to the White River State Park Gardens when you purchase Zoo tickets. I have to say while I loved the Zoo, the Gardens were stunningly beautiful.

Dragonflies, thankfully, always seem to find us.

While I am always exceptionally proud and happy for Lola and all of the firsts she accomplishes, I am selfishly thrilled with her first from yesterday. As I’ve mentioned before, Lola is not one to show much emotion when I leave for work nor does she when I get home. For the longest time, we attributed this to her lack of vision and who knows…maybe she’s just not that into me! But lately her vision has been improving and she seems to notice more within her surroundings. So yesterday when I got home from work, I walked into her bedroom where she and her father were playing, I said “Hi Lola” and within seconds she spotted me and made a b-line straight for me. As she got to my legs, she did her little arm lift to indicate she wanted to be picked up. I scooped her up so quickly and was damn near in tears because of this small gesture from Lola. This is huge in our world…OK in MY world!

Since Lola was born, I have wanted to feel needed by my child. I know this seems silly, but I truly believe it is an innate part of being a mother…at least for me. Of course Lola needed me and proceeded to show me in her own way which I had learned to accept. But I selfishly wanted to hear her kick and scream as I left for work. Or giddily shout with excitement as she heard me come home. At the cafe I work at, I see mothers act so annoyed when their kid throws a tantrum because they are going to refill their coffee and I often think what I wouldn’t give to have that. I’m sure it sounds preposterous, but it’s my simple truth.

Yet within the last few weeks, Lola has been a true mama’s girl. Of course she loves her daddy, but she has been especially affectionate toward me. There was a time when I could put Lola down for the night with just her paci, her giraffe and a kiss. But these days Lola will fuss and fuss until I finally pick her up. I’ll lay her next to me in the bed, but that’s still not good enough. She wants to fall asleep in my arms. I’m sure you’re thinking “bad habit”, but for now she needs me. She clearly feels comfort and safe and that is my job as her mother to provide that for her. She has always been an independent little girl so a bit of extra snuggle time is fine by me.

And hugs.

Did I mention the hugs?

Rob and Lola’s PT have been working so hard to teach Lola how to hug…for me. And as of lately, the girl hugs me. She heavily falls into me. She rests her head on my shoulder and takes a sigh of relief as if she had been waiting for that moment. Little does she know, I’ve been waiting for that moment too.

A perfect Mother’s Day gift if you ask me.

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My lack of posts only mean one thing…I am back to work.

My mother reminded me that I have a lot of people following the blog now and while I am honored and thrilled to have such a following, I also feel the pressure of “staying on top of it”. I loved staying home with Rob and Lola while I was on medical leave because it allowed me to not only hang with my family, but it also allowed me to dab into more writing. We started this blog (back then LiveLoveTravelSouls) in Costa Rica as a way to stay connected with our family and friends. I actually never wrote for it because I felt my writing was inferior to my husbands witty charm. But then came a pregnancy and my days of feeling disgustingly ill from the morning sickness prompted Rob to push me to start writing about being pregnant. I remember I sat with my feet dangling in the pool with my notebook and I came up with my first draft. Can you tell I minored in journalism in college? After my first draft, I edited and edited again. I recall feeling nervous to share my writing in fear of being critiqued. Perhaps my hesitancy stemming from journalism professors heavily marking my stories with red ink and phrases like “too much emotion” or “not objective”. But then thinking back to those remarks made me realize I could write with as much emotion as I wanted on a personal blog. If a reader didn’t like it, they simply didn’t have to continue reading. I wrote “Pregnancy” and I knew in the second I published it, I was going to like being a blogger. And so began sharing my our life with the world.

I blogged throughout my pregnancy, I giddily shared Lola’s arrival, I sought advice about being a first time mother only to realize those trivial worries (like whether or not to give Lola a pacifier) were going to be replaced with worries I didn’t think I could handle. The seizures, the diagnosis, the medication, the day the seizures stopped, the therapy and the fear of every unknown I could conjure up in my head were publicly talked about because I didn’t know how to handle it on my own. I would ask my husband question after question and feel no relief until I published a blog post about it. While I certainly appreciated all of the support, I realized my ability to let go was simply getting the worry off of my chest and out of my mind.

My blog was is my diary.

A very, very public diary.

But it’s been cathartic and helpful. I go back and read some of what I wrote and I am shocked as to how raw my emotions were. Not only were they gut-wrenchly real, but I actually hit “publish” meaning I was willing to share it with the world. Now here I am almost two years later still keeping up with this blogging thing. My husband knows the sound of my little fingers diligently typing away and often jokes about what part of our life I am now sharing.

Now the audience has become broader and Lola has become a true inspiration in the special needs community. On a personal level, I’ve been able to create relationships with other families and we share everything from our worries, our triumphs, our doctors or just an open ear. I’ve realized my ability to use this blog as a platform to help organizations I am passionate about. And one of the most important reasons to continue blogging is to help raise awareness about West Syndrome (Infantile Spasms), Cortical Visual Impairment and Lissencephaly (at least we think that’s what Lola has). My article on www.specialneeds.com about West Syndrome has been well received and I’m amazed by how many people have reached out thanking me for informing them about infant seizures.

I never thought my ramblings would turn into a passion, but I’m honored and grateful to be able to share our lives with all of you. The support, advice, resources and stories you have all given us in return is appreciated and will continue to be reciprocated.

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