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.