Spring time brings new life. The flowers and trees start to bloom, the sun seems to shine brighter and birds are chirping. I've been really enjoying the nicer weather this year. I've realized that the sun and fresh air are cleansing to my soul. Deep, I know. But mostly, I have also enjoyed being able to get Maddie out of the house to get some fresh air and sunshine. I want her to enjoy being outside and all the beauty and refreshment that comes with it.
Over the past couple of months, she has become a little explorer. Her teacher said to me the other day that she loves to explore the classroom and there is no doubt that she also loves to explore at home. She mostly explores things orally, however she is very curious and likes to move around to see different things. She's been on the move. No, she is not crawling, yet, but I do believe she's getting there. Slowly, but surely. Instead, she sits up and falls down and rolls to where she wants to go. And the last couple weeks, she has been rolling over on her hands and knees rather than her belly. A good sign for crawling, I assume. I come home from work and the living room is a mess, with evidence of her "playing" with her toys (by playing I mostly mean mouthing). While I hate messes, I truly love to see this. When I see this mess, I see development. Movement. Reaching. Growth. Fun. Happiness. I see something, that not too long ago, we weren't sure if we would ever see. A sign of new life, if you will. Of course, one of the hallmarks of spring for many is the Easter holiday. Our family spent Easter with our various family members celebrating in different ways. We ate good food, had an egg hunt, dyed eggs, visited my brother's grave site, and enjoyed a ride on his motorcycle. We traveled to Norwalk and back to Columbus and saw many friends and family. And we enjoyed the sunshine and the fresh new life around us outside. We had a great weekend. What stands out to me the most is the love that pours out of everyone for each other, but also particularly for Maddie. Because Maddie's needs and abilities are different, my fear is that people will treat her differently. That she will be left out, forgotten or loved differently. This fear grows as she grows because her differences become more apparent. I've had more people ask me questions about her feeding tube or wheelchair and while I am happy to educate them, I'm terrified of these questions. Questions that I fear I don't know how to answer in a way that will allow others to see Maddie, and others like her, for more than her disability and that will allow others to be loving and inclusive. But, this is a topic for another day. What I know right now, is that Maddie is beyond loved. We started the Easter season visiting the sensory bunny. The sensory bunny is an experience to visit the Easter bunny, like any other, that considers the sensory needs of special needs individuals. Maddie enjoyed the bunny, giving him kisses and petting his fur. We continued Easter festivities by doing an Easter egg hunt specifically for special needs families. The eggs were filled with non-edible treats and each kid was ensured the same amount of eggs. Families were able to take their time with their kids of different abilities and not have to worry about whether their kid would even get one egg. While Maddie certainly doesn't understand the concept of easter egg hunts, she enjoyed exploring the eggs and the grass and seeing other people. These inclusive activities helped me to feel that Maddie could be apart of the Easter experience, despite her needs. All because people want to make sure individuals with special needs can also have joyful experiences. That's love. Our families also helped Maddie to have a joyful Easter experience as well. Maddie was included in an egg hunt with the rest of the kids, where some of the kids helped her find eggs. My mom made eggs for us to dye, knowing full well that Maddie isn't going to dye the eggs herself, but also knowing that she deserves the experience. Maddie got a few Easter baskets from our families full of thoughtful things picked out just for Maddie. It's not easy to know what to get her when she is limited in her interests and abilities including not being able to eat any candy. We certainly appreciate the effort our family makes to make her feel loved and included. One other surprise this weekend was a special gift from a special friend. It was a beyond thoughtful gift from someone acknowledging Madelyn, her needs, and most of all showing and spreading a strong love. These moments catch me off guard, leave me speechless and left wishing I could somehow show how much gratitude and love is in my heart. We saw a lot of people this weekend. People that haven't seen Maddie in a bit. Compliments and words of encouragement were given by many. Many acknowledged her development and growth and her sweetness and joy. Things that I see and that I am beyond proud of her for. My heart swells with the acknowledgement and celebration from others. Maddie is more alert which I attribute to the VNS. We are noticing a possible reduction in seizures, though its still too inconsistent to tell. Last year around this time, she was on the keto diet, feeling miserable and not herself. This year, she is playful, giggly and so loving, offering kisses freely to just about everyone who says hi. I showed her her Easter basket on Easter morning and she had a bright smile on her face and reached inside with curiosity. My fears about how Maddie will be treated will always be there. But the reality is the love people have for Maddie isn't fading. On my way to Easter church service on Sunday with my mom, I heard a song on the radio with the following lyrics: love is all we have to give. Breaking it down, so simply and so basic. It is so refreshing that nothing more is needed. Easter is about a lot of things I've already described. But more importantly, for me it is the end of lent, a reflection of Christ's sacrifice, a celebration of Christ's resurrection, and ultimately a sign of Christ's ultimate love. A love so amazing. A new and fresh love, unlike any other. Jesus was sent to show us how to love. There is so much pain, hate and anger in the world. Yet, I'm encouraged that love prevails-in my world at least. In the end, all we really have to give is love. Love- so fresh and new-a way to bring new life to a world that needs something more to connect us all and to help us remember how much we need each other no matter our differences and the love and sacrifice of our Lord. He is risen! And because He is risen, we are loved beyond measure for eternity. Maddie will always be loved.
1 Comment
ELIZABETH J MOORE
4/19/2017 06:27:53 pm
That's wonderful Kristen
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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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