I realize it has been a few weeks since my last blog post and my only explanation to that is I have a young infant who loves his mama and a little girl who has found a freedom like she never knew. I see these blogging mothers who raise families, some work, in pictures their houses look clean and tidy and yet they still find time to create these amazing blogs. I can’t quite figure out how they do it all. I thought I would have plenty of time to dedicate to this blog after I had Sebastian. Lola would be in school, Sebastian would be an infant and I would spend parts of my day listening to music and writing my little heart out. I find that vision so far from my reality that I am sitting here literally shaking my head and laughing out loud. I’m lucky if I eat a real meal most days and the stars have to be aligned just right for me to get a shower in. And it doesn’t count if my daughter is trying to push the bathroom door open or if I can hear Sebastian screaming because he can’t smell my presence. My life is just crazy these days.
But you know what?
I wouldn’t change a thing.
OK, I lied.
A date with my husband would be nice, a night at yoga would be invigorating for my soul and a housekeeper would be helpful. But those things will come. Well, maybe not the housekeeper part.
I’m doing exactly what I want to be doing. I’m in love with a man who still makes my heart flutter when I see him, I have two incredible kids I love dearly but who take every last ounce of my energy, I have started to immerse myself into a dream job I will officially begin in July, and I’m healthy. What more could I want?
If this little ole blog has to take a backseat than so be it. My ultimate goal behind Say Hola Lola was to create awareness about infantile spasms (West Syndrome), cortical visual impairment and simply raising a child who has challenges. Families with newly diagnosed children will peruse the internet searching for answers and looking for hope. I wanted them to find my website because I wanted them to see Lola. I know what they are going through because I was there. When Lola was first diagnosed, I wanted to read stories of hope and I wanted to see pictures of children with these conditions still just being kids. I wanted to see that life will go on. Yet I had a hard time finding what I was looking for – instead I mostly found horrible statistics telling me my kid could die an early death from West Syndrome or that she would never go on to live a fulfilling life. Well folks, I’m here to show the world that that is simply not true. No matter how delayed she is, no matter if she has to remain on anti-seizure medication for the rest of her life, no matter what – my daughter is living a damn good life. One that is meaningful, inspirational and definitely fulfilling. In many ways, she is just like any other kid, but she’s more than that…she’s Lola. She is living proof that a diagnosis does not define a child. And from my lack of posts – well that should be the best indicator that life can still be wondrous and amazing even with the setbacks your child might face.
So what have we been up to?
Do you know the Alicia Keys song “Girl on Fire“? Well I think it may have been written for Lola as sister is indeed on fire! She went from crawling one minute to running around like a mad woman. She is here, there and everywhere. The walking has given her a level of independence she has never experienced which is good and sort of bad. It is good because my little girl is walking and oh is it a joyous thing to see. It is bad because Lola doesn’t quite understand the boundaries that come with walking. But as with anything,
I hope I’m sure it will come in due time.
Along with the walking, she is pushing the limits of her comfort zone. Activities or challenges she used to need our help with we now find her attempting them on her own. These days there isn’t much that will hold Lola back and if she can’t do it the first time – she’ll keep trying until she can. Her strength and perseverance is uncanny. If she falls (and my God do her falls look painful), she’ll get right back up and keep going. It is amazing to watch.
Sebastian is busy being Sebastian. He likes to chew on everything, his hands are always in his mouth, he drools, he farts like an adult, it seems as if he grows an inch every single day, he likes to watch his daddy make funny faces, he’s jumpy, he’s starting to be fascinated by Lola and he is just a sweet, sweet little boy. He looks at me with such adoration. It is something I’ve longed for since I had Lola, but I never wanted to put that pressure on her. I knew my face was complex to her due to her CVI so I tried to put my wants aside and accept the things she could do. Yet I would be lying if I said I didn’t love the eye contact Sebastian and I make. He can be upset and with one look at me he is able to calm down. It’s such a foreign concept to me, but it is something I will never take for granted.
My mother-in-law and her partner came to visit us a couple of weekends ago. It was the first time Kathy and Greg met baby Sebastian and it was the first time they saw Lola walk. So many good things came from that short stay. We reminisced, we shared stories, we ate good food, we went on walks, we exchanged baby pictures of Rob and myself to see who Sebastian looked more like and we just had a good time. I like simplicity when it comes to family and I appreciate others who feel the same. I’ve been blessed to come from a good family and I’ve been even more blessed to be welcomed into Rob’s.
ISBVI Spring Fling
Last Friday was Lola’s Spring Fling at the Indiana School for the Blind and Visually Impaired (ISBVI). Rob took the day off of work to join Sebastian and me in attendance to support Lola and her new school. The day began with a music program where the entire elementary (preschool – fourth) took part in various musical acts. The kids were mesmerizing to watch. They did everything from play piano and other instruments to sing 80’s music (“I Wear My Sunglasses at Night”) and two little boys even came up with their own rap song about Spring! Lola’s class sang a couple of songs and while she may not have been actively singing, she still stood up there with her peers.
The day continued on with a BBQ style lunch served outside. Afterward we went down to the track to start the anticipated Triathlon. Now I wasn’t doubting my kid, but I was curious to see how she would compete with the other kids. I’ve never seen her ride a bike and while she can run, she certainly wouldn’t follow a path. But that is what’s so amazing about ISBVI – everything was catered to a kids ability. The children had all sorts of various bikes on the track to choose from and I found one where I could push Lola. And then when she wasn’t able to walk the entire next leg, a bus dropped us off giving her a bit of a head start. Next we changed her clothes and off she went to the pool where someone was there to assist with the kids who couldn’t swim unassisted. Every child received a medal afterward which meant every kid won. It was cool to see our kid in an environment that was so supportive of her. Every teacher and aide helped every student out – nobody was left behind. It’s what I envisioned for my daughter when I was searching for a school for her. I wanted a place that was conducive to all ranges of abilities and I’m thrilled to say we found it at ISBVI.
The day ended with carnival style treats and this is where the school really won me over. Funnel cake, Italian ice, popcorn and cotton candy – I was like a little girl again. Seeing the children get so excited because their lunches are often too healthy made the smile on my face never leave. By the end of the day, we were all exhausted. Lola was practically asleep before we even left the parking lot. But it was an amazing day and I’m thankful we were able to be a part of it.
Easter at the Howell’s was quite relaxing and again – simple. We live in a city where neither Rob or myself have any family. My parents are in another country and most of my family and closest friends are in Michigan. Rob’s families live a good few hours away each so our holidays are usually spent with just the
three four of us. Easter was no exception. We spent the day relaxing and simply enjoying one another. We like giving useful gifts to our kids so Lola’s basket had new jammies, shorts, a hat and bath toys and Sebastian received homeopathic teething drops, a new bottle, a truck and some socks. Lola was more interested in Sebastian than her basket which was super cute to see.
I have loved watching their relationship blossom. It once consisted of continuous crying over one another but all of that has rapidly changed. They giggle at each other, they constantly try to get the other one’s attention, they have their own language (finally someone who understands Lola speak!) and Lola likes giving her brother kisses. It is enough to make my heart melt. It’s what holidays are all about – spending time with the ones you love. I’m thankful to have three amazing people in my life I get to spend every single day with.