Madelyn celebrated her 3rd birthday on Monday!! She's now a big, three year old. Birthdays are exciting. A time to celebrate another year of growth and accomplishments and a reason to really celebrate those we care about. I've always enjoyed birthdays and appreciated the celebrations that come with them. And when I got pregnant, I had expectations and dreams of how I would celebrate with my baby. In fact, the night before my planned c-section, I celebrated Madelyn's birthday in advance with the new birthday cake flavored oreos. I loved the idea of coming up with sweet parties and gifts to create so much joy in my little one. And watching her run around the back yard with her little friends as they played and laughed at her parties. Of making favors and coming up with the right little theme or allowing her to come up with the theme of the year. Of making her cake and watching her face glow with excitement. So much expectation.
I've certainly learned over the years that with expectation comes disappointment. I do this to myself I know. It's something I constantly struggle with, but in an effort to be kind to myself, no one really has a child without expectations, right? Maddie's first birthday was celebrated with family coming to the house. I did my best to make it as special as I could. At that time, Maddie couldn't eat cake and barely touched anything my mouth. So I insisted we make her try birthday cake pudding. We certainly didn't get the opportunity to have the ever popular smash cake. We weren't watching her climb on the boxes of her presents and instead we were opening gifts wondering if she would ever be able to play with them. She wasn't running around with other kids, but was sleeping in the arms of her loved ones because her seizures and/or medication made her tired. It really wasn't so bad, but it wasn't what I dreamed of. Maddie's 2nd birthday was similar. We invited a few more people. We were able to get her to eat a blended cupcake. I was so happy to let her eat "cake" and she actually seemed to enjoy it. But in reality, the party seemed more for me to try and give her as normal of a life as possible and less because I thought she would want it, even though that's what I convinced myself. Maddie wasn't running around, she was tired like the previous year, we were still opening gifts questioning their functionality for her, and her day ended with a seizure. Seizures love to come on special days, even after I bargain, hope and pray that she can just have this one day without a seizure. Both parties were nice days, but after both the first and second birthday party, I found myself sad and saying, I'm not doing it again. It's a lot of work to try and make it special when I'm only guessing what might make her happy and perhaps really only trying to make myself feel better. Each year, as August approaches, I find the dread creeping in. It's bittersweet. A time to celebrate Madelyn's huge accomplishments and let's face it, the fact that she's survived daily seizures for the past year is a pretty big deal. Let's have a party! On the other hand, I have no idea what Maddie truly wants to do, so I have to guess. Perhaps I should focus on what I know makes her happy rather than trying to fulfill my expectations or even the expectations of others. I know as August approaches, I'm going to get asked the questions, "what are you doing for Maddie's birthday?" and "What can I get for Maddie for her birthday?" Questions I try to avoid, and frankly hate. I hate them because I have no freaking clue. It pains me to think of the toys I have tucked away in the closet until she can use them. To think she might not get any toys if I don't come up with an answer and she has to have toys on her birthday, right? To think about that fact that I don't even have a gift for her because I don't want to give a gift just to give a gift. Or to even consider giving a three year something as ridiculous as a wheelchair bag. I hate that I don't know what to give her to celebrate her, for her to have some fun in this stressful life. I know it's not about the gifts. But with birthdays come expectations. Think about it. What's the first thing that comes to mind when I say birthday? Is it party, gifts, cake? All things that cannot simply happen for Madelyn. So with August comes dread. Pressure to come up with the perfect idea to celebrate, but within so many limitations. And pressure to tell everyone what gift to buy. Thoughts about whether Maddie will ever have friends to invite to a party and if she does what will that be like. Will they be true friends or "friends" that I have decided she should be friends with? The older she gets, the more I struggle with these questions. She's more aware and the differences between her and other kids her age become more obvious. My heart aches for the expectations that I had the night before she was born as I ate birthday cake oreos. Instead of a birthday party for Maddie, I throw myself a pity party. I mourn the life she deserves but didn't get. I get sad, angry, irritable and feel completely cheated. And I put a smile on my face. Because with birthdays come expectations. And Maddie certainly doesn't deserve a sad or angry momma on her birthday. This year I tried to challenge my expectations and do something different. Coming to this conclusion didn't come without sadness and anger. It didn't come without conflict. And yet, I do believe it was the best thing for Maddie. Maddie deserves to celebrate in the best way she can. At the end of the day, she and our family can't celebrate like everyone else or more importantly the way we want to. So this year, we chose to fill the day purposefully with things that we know bring her joy and hopefully make her feel special and to purposefully not do things that might make our hearts ache a little, i.e. a party. Maddie had a great day and so did we. To be honest, I feel silly even writing these things, because this life is about so much more than how a birthday is celebrated. However, they're my feelings and therefore they're valid. They represent so much more than just her birthday. It's the little things that come easy that we take for granted and the little things that should come naturally (that everyone else has) but we can't have that we ache for. It's expectations gone unfulfilled that lead to disappointment and in the life of a child with special needs, there are disappointments deeper than I could ever have imagined. On the other hand, in the life of a child with special needs, when we let go of expectations and allow to be what will be, there are joys deeper than I could have ever imagined too. I will continue to honor my feelings and have pity parties and at the same time I will remember that just as she is, Madelyn is amazingly perfect. Letting go of expectations and accepting that our lives aren't going to follow the "typical" path can allow Madelyn and our family to not only survive, but thrive beyond measure.
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AuthorHi, I'm Kristen! I'm a mother of a beautiful, but rare little girl and the wife of my best friend. I have decided to share my experiences on this journey in hopes to help others understand or help others in similar situations. :) Archives
October 2017
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