For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day.
The tiny streets were lined up with artists, local businesses and everyone in between. There was a craft sale going on which is where you could find me a good chunk of the morning. Sadly, I buy this craft stuff and rarely find time to actually use it. Someday though. Someday. Along with the knick knacks, we found a great kids art table. I pictured Lola and me sitting around in our art smocks (yeah we got some of those too), painting wildly like Salvador Dali. Hopefully Lola gets the creative gene that her father has as this mama isn’t too inspiring in the world of art.
We ate baked goods from the tiny bakery, we warmed up with hot beverages from the coffee shop, we enjoyed meeting new neighbors and exchanging information,
we I eagerly met the new owner of an ice cream shop prepping to open soon, we listened to a band play kids music at the library and we just sort of meandered for hours on end. Even though we were just a couple of miles from our home, Irvington was alive like I had never seen it. I felt proud to be part of a neighborhood where the local businesses and the history of the town were indeed being celebrated.
What was intended to be just an hour or so checking out the Irvington festivities turned into an excursion that kept us out for half the day. This wouldn’t have been a big deal, but I had purposely not given Lola her anti-seizure medication that morning in hopes to conduct a tiny experiment. Rob had shared with me that he had accidentally forgotten to give Lola her medicine a couple days prior and he was pretty shocked as to how different Lola was without it. He said she seemed alert, aware, more attentive and just more focused in general. So I wanted to see for myself. There have been plenty of times where Lola has spit out the Trileptal therefore I knew that delaying a morning dose wouldn’t be detrimental. I have to say…I was kind of shocked as well to see this non-medicated version of Lola.
Rob was right. Lola was Lola, but just a more awake Lola. I mean when you think about it, it sort of makes sense. Anti-seizure medication essentially slows down the brain. We always give it to Lola first thing in the morning (also at night) after her breakfast so her entire day is spent being semi-sedated from this drug. Thankfully Trileptal does not have side effects that are harmful like many of the other anti-seizure medications on the market, but it’s difficult to give your child a medication that you know puts them into slow mode. Now Lola wasn’t suddenly speaking in sentences and she wasn’t miraculously walking, but as her parents, we noticed tiny nuances that were usually a challenge for Lola. She seemed to motor plan more logically, she was more observant, her vision seemed clearer, she was certainly more affectionate and she was happily awake (usually naps late morning/early afternoon) for the entire day. It’s interesting, but Lola has been on Trileptal for almost her entire short little life (she was put on it when she was just four months old) so we don’t exactly know a non-medicated Lola. I have always been so afraid to not give her her medication that I really never thought about what her life would be like without it. But after seeing my child on Saturday, I’ve been thinking about it more than ever.
Lola goes back to see her neurologist, Dr. Zimmer, in July and at that time, we will have some pretty heavy decisions to make. Lola had a 24 hour video EEG back in November where there was brain activity that could possibly lead to seizures. After analyzing those results, Dr. Zimmer made the decision to give Lola’s brain more time to catch up without the worry of seizures. In reality, it’s really a big mystery. They don’t know if Lola is seizure-free because her brain has overcome the epilepsy or if she is seizure-free because of the Trileptal. Dr. Zimmer said at some point we will have to decide if we want to treat the EEG or if we want to treat Lola. For the longest time, I was certain we should continue to treat the EEG as I still have this sickening fear of seizures. I literally watched Lola disappear when she was seizing which is an image no parent should have to witness. Yet after spending a day with my girl without those darn drugs…I’m starting to think its a chance we might have to take.
I want to teach Lola that you can’t spend your life living in fear so perhaps it’s time I start living by my own advice. In July, if Dr. Zimmer thinks the wean is the right thing to do, then I will nervously comply. I knew this time would come at some point and as scary as this decision will be…I have a feeling it’s the direction we are heading down. It’s time for Lola to break out of her protected cocoon and show the world that she can indeed fly. And even if by some random chance, she does start to have seizures, we will simply cross that bridge when we get there. The biggest lesson I am learning as a mom is that I can’t control everything. In fact, we mothers give up control the moment our child is brought into the world. We can only do our best to protect our children, to honor their individuality, to guide them in the right direction while offering choices and ultimately…all we can do is love them. That’s all they want. It’s what all human beings want. Love.
“May I feel contented and safe.
May I feel protected and pleased.
May my physical body support me with strength.
May my life unfold smoothly with ease.”
― Sylvia Boorstein, Happiness Is an Inside Job: Practicing for a Joyful Life
I’ll leave you with a link to a wonderful interview between NPR host of OnBeing Krista Tippett and author, Sylvia Boorstein titled “What We Nurture – The Spirituality of Parenting“. I heard it while driving to work on Mother’s Day and I found myself driving slower and slower in hopes to catch every minute of it. I shed countless tears, I chuckled numerous laughs and I nodded my head in agreement to every aspect of the conversation. I was deeply moved and it made me appreciate, even more, that I am able to relate because I’m lucky enough to be Lola’s mama.
You can find the interview here.
Last week, I asked Rob to help Lola and me get our bike combo set up. And no…Lola does not simply sit on the back of my bike as I am way too clumsy to have her on my own bike. Instead, she sits safely in a little bike trailer with the makeshift windows open and she has all of her favorite toys that make an immense amount of sound letting people know…hey – we’re coming through. Since we now live in a new neighborhood, I wanted to go on an adventure and explore. We found a bike path and just kept going straight. We biked past streams and ducks, mothers walking with their children in strollers and couples holding hands simply enjoying the outdoors just like us. We eventually stumbled across one of the three parks that is in close vicinity and decided to play around in the grass.
I suppose I’m being a sap this morning, but looking back at these pictures conjours up so many emotions. Life is busy. And I don’t mean just for ourselves. Life is busy for everyone. We work, we take care of responsibilities, we work harder so we can afford to take care of those responsibilities and the cycle continues on. I’ve been trying to savour the small moments lately. Absorb the minute things in life. Embrace making new memories. There was something about just sitting in the grass with Lola that helped bring me back to this. And I think what helped was catching this photograph.
There is such an innocence about Lola in this picture. It’s like she is just taking in the moment. Seeing. Smelling. Listening. Just being. I think it is in instances like this that I understand Lola’s vision disability and its purpose. Because of her low vision, she often stops and it’s almost as if she tunes out the rest of the world to just keenly listen. She’ll give a little tilt of the head, her eyes will focus generally upwards and she listens. She probably takes in so much more of her environment simply through listening while we think you could only truly understand an environment if you can see it. I’m learning that’s not the case and I have my daughter to thank for teaching me this. And while the weather was calm that day, to our surprise, a huge gust of wind came through.
And she loves the wind just like her mama.
I’m not one to give advice on life as I have my own struggles I deal with each and every day. But I have a challenge for you: absorb the moment. Whatever your moments may be. Grandiose or minute. Slow down the busyness of life to actually enjoy it so you can categorize those memories instead of wondering where the time has gone. Next time you’re outside, take it in like Lola. Shut your eyes and pay attention to what you can learn just through your other senses. Notice your breath. The smells you take in. The sounds you wouldn’t always hear. Just be…
…be like Lola.
We recently packed up the car and headed down to Bloomington, Indiana for another VIPS-Bloomington Play and Learn (PAL) get together. Originally, I was supposed to tap into my inner domestic goddess self and take a sewing class with a girlfriend, but I was feeling the need to be around my people. We hadn’t seen Ann Hughes in months as Lola’s vision continuously improves and what better way for Lola to spend an afternoon then listening to songs, seeing her little friends, enjoying the crisp outdoor air and of course…playing in the ball pit.
The wonderful thing about these PAL events is that you walk into a room full of people that get it. This is our time to take down the protective barrier and simply be. We share inchstone stories and we celebrate them as we understand the hard work that went into the child achieving them. We eagerly explain new therapies that may be working and offer support when we realize that perhaps the therapy wasn’t a fit after all. We talk about insurance debacles and which seizure medication seems to be working the best. We exchange doctor praises as well as woes. We write down the good ones and we highlight the ones to stay away from. We offer congratulatory applause when a VIPS child ages out and we hug mamas tightly to reassure them that all will be good. As much as our children love PAL…we, as parents, do too.
Its been amazing to see the PAL group expand as I can remember when there were just a few of us families. Over time the groups have gotten bigger and while we are ecstatic to welcome a new family, it is also a reminder that VIPS-Bloomington is helping more and more blind/visually impaired children. Their name is starting to get out in the Indiana community as they are the only organization that helps the young blind/visually impaired population, but they can only continue to help families like ours if they get adequate funding. As of right now, VIPS-Bloomington gets NO state funding so they rely on grants as well as private donations. I know I repeat myself often about how much VIPS has changed our lives, but I truly mean it. Rob and I were solely relying on the internet in regards to Lola’s vision impairment. Even her doctors and therapists couldn’t help us wrap our heads around what she was dealing with. It was the moment when Ann Hughes walked in that we finally had that ahhhhhh moment. For the first time in the almost year we knew Lola had a vision impairment, we were finally beginning to understand it. And that is all because of VIPS-Bloomington.
For all that VIPS has given us, I only wish we could give back in return. So I use this blog to get the information out there in hopes that someone reading can help. If I had all the funds in the world, I would ensure that VIPS-Bloomington lives on long past my years. I’m committed to knowing that other kids like Lola will have access to the invaluable resources VIPS provides. If you would like to donate to VIPS-Bloomington or if you have any leads on getting this organization funding, then please email me at: firstname.lastname@example.org.
Have you ever slipped and fallen in front of a huge crowd of people? Do you pretend like something somehow jumped out in front of you causing you to fall? Do you simply put your head down and act like it didn’t happen at all? Or do you accept that yes, you just made the biggest ass of yourself, but hey…who doesn’t and really…who’s going to remember anyway?
I admit it…you all saw me fall last week. I couldn’t blame it on an obscure object that disrupted my path as I knew right where I was walking. I couldn’t act like it didn’t happen because that’s probably what got me in the situation in the first place. So yeah I fell and I fell hard, but I stood back up stronger and more determined to continue to put one foot in front of the other because that’s what we do. We keep on walking through life even though we have no idea what lies ahead. It can be scary, but it can also be a beautiful, wondrous adventure. An adventure that no one else has the luxury of going on…one that is specifically tailored for just you. So onward I go without looking back. No feeling guilty for “having feelings” as my supportive sister put it and no apologies for striving for the best life possible for Lola.
I learned a lot about myself last week much of which I’ve been reflecting on. And I also learned that I have an amazing support system made up of family, friends, readers and even complete strangers. The number of emails, Facebook messages and just words of encouragement was overwhelming…even those who have children without special needs voiced similar feelings close to my own. So this week I wiped the last of the tears, put on my best heels (yeah right…more like comfy shoes) and proudly strutted once again.
*** With Spring starting to make its way into Indianapolis, we have been thoroughly enjoying spending our time outside. Our new house came equipped with a lovely porch swing and most days that’s where you can find Lola and me.
Our new house is just down the street from downtown Irvington. Irvington is just oozing with history and character. It has everything you could want in a little town: eclectic artisan shops, a bakery that makes divine goodies, a coffeehouse that has the best cappuccino in the city, a great bookstore, unknown restaurants that you want everyone to know about but kind of want to keep the secret to yourself, wonderful antique shops, a library and so so much more.
I’m finishing this post on a Sunday…a rare day off in my world so I think I’ll go enjoy the rest of this day. Happy Sunday everyone!
Yesterday as I was sobbing to my mother about how much it pisses me off that Lola has to work so hard to achieve her milestones and how I was beginning to feel helpless as her mother, she stopped me and said “maybe you should write about it”. And as I sit here ready to put my most vulnerable feelings out on the internet, I think of my husband gently telling me to be cautious about using the blog as my diary. But today, I’m choosing to write not only to free myself of some pretty bad feelings, but also so others can see that you’re not a horrible parent to thrive for an easier life for your special needs child.
Most days I am strong, positive and crazy ecstatic about Lola’s achievements. I try to not look too far into the future and I don’t dote on what could have been in the past. Most days I live for the present, the now…because really that is all we have is this very moment. But I’m human just like all of you. I’m not some Super Woman Mom who gracefully accepts our different kind of life. I take that back. Most days I do because I really love my life. I love my husband, my daughter, my dogs, my new house, my friends, my neighborhood, my job. I just really do love my life; challenges and all. And the glimpse you all get into our life via this blog is genuine and real. Yet I have bad days too. I have days where I feel mad at the world because life just doesn’t seem to feel fair for my Lola and yesterday just happen to be one of those rare days.
When I found out my sister was pregnant, I had this sinking feeling of what if the soon-to-be Olivia surpasses Lola in her milestones. I remember telling Rob this selfish thought and while it wasn’t addressed at the time, the topic came up yesterday. I saw a picture of now one-year-old Olivia gracefully spoon feeding herself while holding her cup of yogurt. And I have to tell you…it sent me in a tailspin of emotions. I’m not proud of it, but it’s the truth. I knew what I was feeling wasn’t fair to anyone. How unfair for my sister to have her daughter doing these amazing things and perhaps feeling as if she can’t share it with me for fear of hurting my feelings. How unfair for Olivia for me not feeling genuinely happy that she can accomplish these milestones so effortlessly. And most importantly, my God most importantly…how unfair for my daughter to have this unspoken pressure on her to keep up. To keep up with a child who was born perfectly healthy with no obstacles. So there was over a year between them, but yet I was expecting my child, the one who had seizures that significantly set her development back, the one who just as of the past couple of months actually began to really see for the first time in her life, to miraculously keep up with a child who has a very different life than her. The tears won’t stop trickling now. I feel guilty even sharing this with all of you. Rob said it best yesterday, “You are using Olivia as a barometer for Lola.” And he’s absolutely right. I began comparing Lola and Olivia before Olivia was even born.
You know, I’d like to say being a special needs parent is easy. I’d love to say I know I was handpicked to be Lola’s mom because God knew I would be able to handle it. Although I question my ability to handle it on days like this. My heart hurts because I just want what’s best for Lola just as any parent would. I just want a day where she isn’t being pushed through therapies, where she doesn’t have to take medication, where she doesn’t get frustrated because she can’t explain to me what is wrong. Some days I just want her life to not be so difficult for her. I know all I’m doing is putting my own emotions on her because she doesn’t know a life that’s any different. But some days I want to get on the roof and scream “it’s not f*&$%ing fair”! And then I see a post on one of my special needs Facebook pages where a little girl is three years old and has the mental capacity of a three month old. She will never walk, she will never talk, she will never be able to chew her own food and she will never be able to breathe on her own. And yet…this little girl smiles and she’s happy. And I think shame on me.
Society has brainwashed us into thinking your child will only succeed if they finish at the top of their class, are successful in every sport, go on to the best college, get the most lucrative job, marry the perfect partner (God forbid if it’s of the same sex), provide healthy grandchildren and live happily ever after. But what about just being happy? Doesn’t that say something about a child’s success? Because you know what? My kid is happy. My kid is so happy I even commented that she didn’t fuss not once yesterday. My kid is healthy. We’re lucky we don’t spend our days in and out of the hospital (I pray for her health every night). And my God is she loved. I think most of these emotions are stemming out of the insane amount of love I have for her. She’s my life and I just want to part the seas so she can easily navigate her way through the world, but what I’m learning is that I’m still a good mommy even if I can’t make life easy. I’m learning that it’s OK to feel vulnerable, but it’s not OK to compare her to anyone. My mom said yesterday “I don’t compare you to other daughters” and she’s right. We are all unique individuals. I don’t compare Rob to other husbands just as I don’t compare my mom to other moms. Olivia is Olivia and Lola is Lola. Olivia may achieve many milestones way before Lola, but that doesn’t mean Lola won’t achieve them too…she’ll just do it at her own pace. And that’s OK. It doesn’t mean that they are more significant or even less. It just means she’ll get there when she’s ready and able. She’ll get there in Lola time. A time that is perfectly orchestrated and conducted by Lola herself. And what I’ve realized through all of this is that it doesn’t really have anything to do with Olivia after all. It’s simply a mothers wish for her child to have the best life possible without having to work so darn hard.
I’m wiping the last of the tears I’m going to have over this subject for now. I can’t promise myself that a bad day won’t happen again, but I do know that I can’t wallow in it. If I need to have a good cry, I need to allow myself to have one without feeling guilty. It’s perfectly normal as a woman, a mom and especially a special needs parent to feel vulnerable from time to time. I just need to keep on supporting my daughter as much as I do, keep on pushing her to accomplish every task and most importantly I need to keep on loving her as much as I do. Because that’s all that matters. And really, I do know that I was handpicked to be Lola’s mommy. We were made for one another. And my ability to handle our situation? Well it may not always be handled with the most humility, but our family is ready to take on anything life gives us because of the love we have for each other. After yesterday, I know this in my heart. I was just having one of those days.
I wouldn’t feel justified putting this out there if I didn’t apologize to my sister, Olivia, Rob and most importantly Lola. Now re-reading this, I’m feeling pretty shitty about my selfish feelings. I’m still going to hit “publish”, but maybe I should have listened to Rob about this damn blog being my diary.
Find Us on Facebook
Popular Discussion Topics
Tagsbaby birthday blog brain breastfeeding cortical visual impairment costa rica cute dad development family friends grandma happiness happy home hope husband indiana indianapolis Infantile Spasms labor lissencephaly lola love low vision michigan milestones mom mother motherhood neurologist Occupational Therapy pachygyria parenting partial lissencephaly physical therapy pregnancy seizures sleeping special needs swimming toddler vision west syndrome