You are probably wondering why I’ve went into such elaborate detail about these birds, but oddly enough, I saw that their lives were easily translated into my own…with Lola.

Rob and I have had the come to Jesus that perhaps we aren’t pushing Lola out of the nest enough. Now don’t get me wrong, sister does not have it easy. But when your first born has special needs…well…the dynamic of raising your child changes. When Lola was a newborn, I thought my parenting style was going to be how to best shape her into an individual who would blossom in society (and yes, I too, thought success was measured by honor roll, college, marriage and grandbaby…shame on me). And I honestly thought that the minor nuances would be a major contribution. I wondered if giving her a pacifier would somehow make her not able to cope on her own. I never wanted her to cry it out (not even for one minute) for fear that she would think her mother doesn’t listen to her. I just had myself convinced that every decision I made would somehow have some lasting effect on her. And then she started having seizures. And all of those minute details were thrown out the window because at that point, I just wanted her to be OK. Nevermind the Montessori method or what Dr. Sears suggested should be done. I realized very quickly that I was too stuck on the small stuff and I wasn’t seeing the bigger picture. I wasn’t seeing that Lola would be who she was meant. I can help guide her, but I can’t control her.

So now here we are with an almost 2 1/2 year old and I’m still trying to control her environment for her. And for what? Because since the very first day she had those seizures, I have tried my best to create this protective barrier around her. For the longest time, I thought what I was doing was simply instinctual and natural for me as a special needs parent yet what I’m realizing is that maybe it’s time to start to nudging Lola out of the nest. Rob and I always say our job in taking care of Lola is helping her achieve an independent life. Yet I’m afraid perhaps we’ve been inhibiting her independence. Sure there are some things that she simply is not able to do on her own yet. We spoon feed her because she thinks a spoon is a perfect drumstick therefore she would not eat. We carry her most everywhere when out and about because she is not able to walk yet. But there have been a few instances in the last few weeks that we have sort of stood back and watched how quick we are to help Lola. She’ll fuss and throw a fit, but eventually she’ll figure the task out. And you can imagine the amount of pride we feel when we watch her overcome the challenge all by herself.

I’ve said it before and I’ll say it again, no one can tell you how to raise your special needs child. There are no manuals, no way to prepare, no cliffs notes. You just go by instinct and clearly my instincts have been to protect Lola, but how will she ever protect herself if she isn’t given the chance?

It’s pretty amazing that I learned all of this through birds. I am always a believer that signs are out there if you are open to seeing them. I’m lucky to have had this sign right outside my kitchen window.

The old post office that Irvington is trying to save.

Who knew snot could look so cute?

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.

Mother’s Day gift from Rob and Lola

And one from myself to myself too…because dragonflies protect my girl.

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 was given Goldfish crackers as an appetizer at our new favorite Chinese restaurant.

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

Blurry, but nothing in life is perfect. Why do pictures need to be?!

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.

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.

Lola’s happiness

A friendship begins…Lola and her buddy, Krishna.

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.

You know that saying “talk to the hand”? Lola really does!

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.

Clearly she doesn’t want to leave.

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: meredith@sayholalola.com.

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.

Doesn’t it look like a self-portrait?

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.

Dining at a tiny Mexican dive.

Be still our latin american food loving hearts.

This particular antique shop was once a bank…still has the vault and all.

I have always wanted a cookie jar so this antique gem was perfect!

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!

John and Linda – Lola always sleeps with George the Giraffe…best present ever!

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.

I always said I would never be one of those moms whose entire life revolved around her child. I promised myself I would remain true to my pre-child identity. I would not be one of those wives who had a date night tainted with only conversations about their child. I would be different.

And then came Lola. My sweet, sweet Lola. The light of my life, Lola. The new reason for my existence, Lola. My daughter, Lola.

And the visions of what normal parenting would be were altered a bit.

OK, not a bit…that’s a big &%#$ing stretch.

My entire world was completely turned upside down when the seizures came, the medicines began, the trips to neurologists were more frequent than to the pediatrician, the MRI’s, the EEG’s, the therapies, the diagnosis, the retracted diagnosis and all of the other worries in between. Our life, while still normal by our own standards, would not end up being normal after all. And the term “attachment parenting” would have a whole new meaning to me. My version of attachment parenting would soon begin to overtake my entire life inhibiting my ability to trust anyone with my child, to let her go and to lead an existence that wasn’t focused on Lola. I learned I would not be that different wife and mother after all. If anything, I saw I was nothing but a hypocrite as I had become the epitome of the person I feared the most. I was completely and utterly consumed with my daughter.

Sadly, the only person I can blame for any of this is myself. Rob constantly tells me to go do something and my friends will offer to watch Lola so Rob and I can have a night out. My answer is always the same, “I do stuff Babe” and “I’ll definitely take you up on that soon”. But I never do. I go to work and I come home to hang with Lola. I try to give Rob a break because he’s home with her all day, but what I’ve realized is that it is indeed really sad and partially pathetic that I only allow myself TWO hours a WEEK to have time for myself (work does not count).

So after over two years of Lola consumption, I am making a genuine effort to focus on myself as well as my relationship with my husband. In the past couple of weeks, I’ve taken up Hot Yoga, I’ve started taking different work-out classes at the Y Center, I went to the movies with a girlfriend and I even went out for a couple of beers. It may seem mundane, but I am noticing a difference in my thinking. My mom is here visiting and will be back in three months, I thought when she returns Rob and I could get a hotel for a night. We could go actually be grown-ups for once. We could go to the movies, dinner and maybe have a cocktail without the worry of hurrying to get back to Lola. This would be a big hurdle for me to overcome because I have not spent a single night away from Lola since the moment I gave birth to her.

That would be 792 days folks.

You read that right.

792 days.

It’s time to start letting go, time to give my daughter more independence, time to start being more present in the relationship I have with my husband and it’s about time I remember that I was an individual long before I was a wife and mother. This doesn’t mean I have to stop being wonder mama, but I think Lola will actually be better off if I learn to just trust that she’s going to be OK. I’ve never done well with not being able to control a situation so being thrown into special needs motherhood has been a hard adjustment for me. But if I don’t start letting go now than I am going to be that crazy, lunatic mom who sits in class with her kid because she is in constant fear of the unknown. It’s not healthy for Lola, it’s not healthy for Rob and it sure in hell isn’t healthy for me. I know change doesn’t happen overnight, but I’m confident my train of thinking has me headed down the right path. Maybe I can be kind of sort of different after all. In fact, I think I should ask my husband out on a date.

Honey, do you want to go out with me??

These words…oh these words. It has been a couple of weeks since Ann Hughes from Visually-Impaired Preschool Services (VIPS-Bloomington) posted this on our Say Hola Lola Facebook page, but I reread these words almost daily. They bring such happiness to my heart, they bring a calmness to my mind and they bring tears of joy because my girl has worked so hard to get where she is today. My child, who we once thought was nearly blind, now able to use her vision in a way that most of us take for granted every single day. She watches closely – her eyes always following our every move. And not just our move…she cried yesterday as Zoe, our dog, jumped off of the bed out of Lola’s sight. She can spot the tiniest crumb on the carpet and pick it up to try and eat it (not proud of this, but at least she can see those crumbs!). She is beginning to learn through the use of her vision which is crucial in her development since 80% of all learning is done through the use of sight. Last night I began to comb her hair, I stopped and combed my own hair, she watched intently, she took the comb and began to bring the comb up to her own hair. When she sees her shampoo, she will immediately bring her hand to her head preparing to help me wash it. There are so many changes in her vision that I can’t even begin to share them all. But something miraculous is happening. Something all of us hoped for, but none of us could have predicted. As Ann said, we are watching Lola’s vision virtually “turn on” and it has been one of the most amazing things I have ever witnessed in my life.

These pictures were from Lola’s last visit with Ann. On that day, we made the decision for Ann to use her valuable time with other blind and visually impaired children who need her guidance and assistance more. One year ago, those words would have never come out of my mouth as Ann came to us at one of the lowest points in our journey. We were lost when we couldn’t find a vision therapist for Lola nor did we really even understand Lola’s vision impairment. Ann brought so much light, hope and knowledge to Rob and myself. The wealth of information she has shared has given us confidence that we can help our visually impaired child navigate the world just as any other sighted child. But Lola’s vision has improved to such a drastic level, in fact, Ann said Lola’s vision was the best out of all the kids she sees. And while Lola is not ready to actually “graduate” out of VIPS, she needs to learn how to use her vision simply through life experiences. While we are going to miss seeing Ann so regularly, we know she will be back maybe once or twice every couple of months to check in on our girl. Rob and I still have a lot to learn and while Lola can “see” by technical terms, her brain still doesn’t process the information as easily as a sighted child. We know our journey ahead is still quite long, but with Ann’s help…our path is now much more easy to navigate.

Ann – thank you from the bottom of our hearts for everything you have done for Lola and our family. When we count our blessings, you my friend, are at the top of our list. I know you are going to keep on changing lives with every single visit with every single child. You give hope when it feels like there is none. You bring knowledge to a subject that not much is known about. You give love in a way as if these children were your own. We are eternally grateful to have you in our lives. Thank you.

In other VIPS news, VIPS-Bloomington recently went to the State Building to speak with local legislatures about the need for early intervention vision services for the preschool population of Indiana. We hope they are able to get the funding they need in order to continue to provide our visually impaired children with their free services.

Kosair Charities, who so graciously donated one million dollars to VIPS-Louisville to help build the VIPS Preschool has created a donation matching campaign. Starting at $10,000 and up to $50,000 (I know it’s high, but anyone know any super generous or crazy rich people?) they are willing to match up until they reach the $1,000,000 goal meaning first come first served. If you or someone you know is interested, please contact Rebecca Davis, founder of VIPS-Bloomington for more information at vipsbloomington@vips.org. Don’t have $10,000 just lying around? VIPS-Bloomington takes any and all donations no matter how little or how large the amount. Click here to donate today!