All too often, we walk and roll into a store, event or any establishment for that matter and do whatever we need to. Without Maddie, it tends to be a simple process, in and out with little fuss. But with Maddie in tow, we have a lot more to worry about. I'm getting used to it, but it always makes me anxious as soon as we get out of the car and work on getting the wheelchair out. Will someone comment that we're parked in a handicap spot before we even get Maddie out? It has happened before. How many stares/awkward comments will we get this time? Will people just stare or will they be kind and compassionate and offer a smile or a hello? Will people overcompensate because they pity us? The wheelchair is like a special attraction that says, hey, look at me! Only we don't want any attention. We just want to do what every other person is there to do, go about our business without a constant reminder that our child is "different." As I walk through the store, I wonder what Maddie thinks about the people staring at her with abnormal looks on their face. I wonder how I should respond. Should I stop myself from saying the things I'm thinking (which usually aren't very nice) or should I be calm, and educate the other person? Maybe I should just let it go...again, because I don't have the energy for this. Or maybe, I should stand up for Maddie and be her voice since she can't do it herself. After all, we are her voice.
I was walking through Walmart one day with Maddie not too long ago and a couple of older kids totally stopped and turned around and stared. No, wait, they gawked at her. For more than a few seconds. Mouth open and everything. Let me enlighten you with Google's definition of gawking - "stare openly and stupidly". This is not uncommon for us to experience. So, in that moment, my way of being Maddie's "voice" was to choose to stare back at them and hopefully make them realize how uncomfortable it feels. I know a kid in a wheelchair is different. I know it's odd. But staring...I mean...gawking (because, yes you look stupid), is not kind, helpful, compassionate or even a way to better understand. Yes, they were kids and I can cut them some slack because of that, but unfortunately this doesn't just happen with kids and in this instance, their parents didn't take the opportunity in the moment to teach acceptance and/or educate on how others might have different ways of getting around. I believe kids are inherently compassionate and loving and learn to be mean, judgmental and unaccepting by watching those around them. This is very apparent when a curious kid sees Maddie in her wheelchair and makes a loud, unknowing comment. Parents often quiet their kid and keep on moving. Yet, there are the parents who will respond by teaching them about differences. Who will invite them to say hi and talk with Maddie and who model compassion and acceptance by acknowledging her and being friendly. It makes me sad that this will likely always be a struggle for Maddie in one way or another and that her behaviors will be surprising to many which will elicit unkind or uncomfortable responses. For the past couple months, I've been trying to think of a good Halloween costume for Maddie. Unfortunately, she can't choose what she wants to be and I want it to be fun for her. She has been a pumpkin, a little lamb, and a cabbage patch kid in the past. We're not super into Halloween, specifically, but I do love holidays and opportunities to make memories and have fun. This year, Halloween was about so much more than the costume. The costume was fun to select and make, but the costume meant so much more. There really isn't anything exciting about getting a child a wheelchair, except one thing. Google wheelchair Halloween costumes and you'll find the one positive I found from it. Tell me they aren't the best costumes you've ever seen. Last year, we got Maddie's wheelchair too late to incorporate into her costume, so we incorporated her stroller. But this is the first year we got to make a wheelchair costume! Since Maddie's diagnosis, holidays have been hard. Yet, we're slowly finding ways to make them work for us to show Maddie the joy of the holidays. So this year, Maddie was Dorothy from the Wizard of Oz with a yellow brick road attached to the wheelchair and the Emerald City behind her, also attached to her wheelchair. And it created a lot of positive attention. Maddie received a lot of compliments, smiles and warm, friendly greetings from others about her costume, a welcoming change from the gawking. There were stares, but they were because they were checking out the costume. The beauty of a wheelchair costume is that the costume distracts from the wheelchair. For a few hours, Maddie got to have a really cool costume which meant she got to be a part of what everyone else was doing and she got a lot of positive attention for something other than the way she gets around. For a few hours, kids got to see her for more than a kid in a wheelchair and saw her as a kid with a neat costume. She got to participate in an inclusive way rather than sitting on the sidelines, which is more often the case. And this year, we even were able to feed her a Reeses cup by mouth which she has never had the luxury of enjoying! I take pride in trying to give Maddie a meaningful life. We received many comments about her costume and how much time and effort we must have put into it. To the average person, it might seem extreme or that we love Halloween. But, to our family, making a costume was no big deal compared to what we do for her on a daily basis (it really didn't take that long). And to know that she can be involved like other peers her age, motivated me to create a cool costume, even if it took some effort. It's meaningful. It's something I can do in a world where I often have no control of the things she experiences. And for just a few hours, she gets to be acknowledged for something other than being the kid in the wheelchair. What a treat!
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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. I never got to know my grandfathers. I've only ever known one grandparent as the other three passed before I was born. My grandma has always lived far away, first in Florida and now in Pennsylvania. I've always been a bit sad to now know my grandparents in the ways others do, especially when I hear stories about what they were like. I often imagine myself talking to them and find myself wondering what characteristics I got from who. I'm lucky to still have my grandmother though and lucky that she's gotten to meet Maddie. When I met Brian, I learned that he still had all of his grandparents. Soon, I met them and felt very welcomed into the family. I enjoyed getting to know them and feeling as if I was getting to experience a bit of what it was like to have grandparents near by and alive. Both sets of his grandparents have been together for a long time and are pretty fantastic. Today, however, we mourn the loss of his grandfather, Carl. The one who inspired Brian's middle name. While I only have one living grandparent, I've never actually experienced the loss of a grandparent. On Thursday, I got a call from Brian sharing the news that his grandfather, who has been sick, though was doing somewhat better, had passed away at dialysis. My heart was so sad to hear the news and so sad for Brian. I know how much Brian's grandpa means to him. I know that he had a deep respect for his grandpa, has a lot in common with him, and had a strong desire to make him proud. I felt sad for Brian, but also sad to lose such an honorable man who had become the grandpa I never got to have. Carl was a man of high character. He lived an abundant life. He was faithful, generous, hard-working, a family man, and so loving. He was a veteran, who raised a beautiful family and devoted his life to the love of his life for 67 years! What an inspiration to remain committed to their vows for so many years. When Brian and I got married, he shared with us in a letter many words of wisdom for a healthy marriage. I cherish those words and deeply respect them. Carl also spent his retirement giving his time to those who needed it. He was charitable and worked a lot with meals on wheels. Though I didn't know him all that long and I wish I had more time to get to spend and learn from him, he became family and treated me as such. He was so kind to us and so proud of his family. I'm so honored that I got the privilege of meeting one of many individuals who is responsible for inspiring my husband to be the man he is today. Carl loved his great grandbabies and he loved Madelyn. Sweet Madelyn will never truly get to know her great grandfather, but how awesome it is that she has met him and experienced him and will always carry a part of him with her. Carl always told us how we were doing a great job with her, raising her and taking care of her. He always shared how proud of us he was. I loved that about him because it is so very hard sometime. He was special and his generation has a lot to teach all of us from younger generations. Live simply, faithfully, lovingly and generously. If I can instill these values into Maddie and carry them on in our family, then I'll feel we'll have made him proud. I've learned many lessons in life but in particular I've learned to cherish the people you have in your life, never take them for granted, and love those around you abundantly. Maddie is so lucky to have 3 of her grandparents and now 5 great grandparents to teach her, guide her and support her. I know she is too young to know what is happening, but I do believe she'll miss him. As will I. Now we have another angel to add to our army of angels in heaven watching over our dear Maddie. Thanks for being my grandpa on earth. 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. When we received Madelyn's diagnosis just over 2 years ago, we were devastated. After becoming more connected in online support/education groups for other parents of atypical children, I quickly realized that we were very lucky to have a diagnosis, especially at just 4 months old. I saw people seeking out test after test for answers and guidance with little to no results. I saw people who had gone years without an answer, but who kept fighting and eventually got one. And then there we were who, only by God's grace and the recommendation of an educated doctor, followed through with genetic testing and got an answer after 6-8 weeks of waiting. A small time frame compared to the alternative. In fact, the attending doctor during the admission where we learned about her diagnosis stated that he wouldn't have even considered genetic testing given Madelyn's age and presentation and praised the doctor who did. I am grateful for that doctor and consider us very lucky. That same day....that awful, horrible, no good, very bad day, I was told that she had a genetic condition that was associated with "not good things." Brian and I later sat down with the doctors who shared information about her diagnosis. The information shared...well it was print offs from the CDKL5 website. The doctors couldn't really answer our questions. They told us it was very rare and that she was 1 of about 500 WORLDWIDE with this condition. And that not much was known about it. The doctor who was wise enough to consider genetic testing then told us to treat her like our baby, just like we always had. To love her and cuddle her and to do the best we could for her always. And basically, that was it. We were sent off with very little information and a significant amount of fear about what Madelyn's life and our family life would be look like. During the days ahead, we would grieve the child that we had thought we were going to have. Something I still do. But in the midst of this, we had to find time to research and learn from other families and from Maddie and learn to trust our gut. We interacted with providers who have never heard of her diagnosis and who admitted that we as parents would need to be the experts. Let me tell you, that's not the most encouraging thing to hear as a parent. We did our best to learn as much as we could as quickly as possible and tried to find providers that had some experience with working with complex kiddos. This is an ongoing process for us. Even if a provider has some experience with her disorder or with complex kiddos it doesn't mean that they know what is best for Maddie. Let me tell you why. Rare disease is terrifying. Imagine going to the doctor and being told you have a problem, it will cause lots of problems, and there is little to no information about it. Imagine being told that your child likely won't develop much at all and trying to not be completely discouraged. Imagine feeling the hope of having a diagnosis and the indescribable let down that there is no treatment or cure because doctors don't even know about it. Imagine being told that the outlook is unknown, that the life expectancy is unknown, and that every single thing is a trial. I struggle to think about the way doctors present tough diagnoses, mostly because I didn't have a positive experience with this. I truly believe that a doctor has the power to potentially make or break a parent's hope and a child's growth potential. We give doctors a lot of power and yet unfortunately sometimes that's not the best thing. I imagine doctors feel pressure to be the expert and provide a satisfactory answer and sometimes that is detrimental especially when it strips the hope from parents. Children need to grow in an environment that supports growth. The words of a doctor in the case of rare, even the most well-intentioned, can cause a parent to believe their child is not able or that they will be wasting their time or that they are being resistant to acceptance. Parents can feel inferior, discouraged, tired, and disempowered. When the reality is: rare means anything is possible. And when anything is possible, HOPE is alive! No matter what anyone says. What we have learned is that Maddie is writing her own story. I do my best to take in as much information as I can from other families, but that's what I do, I take it in. I don't necessarily believe their experiences to be truth for my daughter. Mainly because what I have noticed is that every child is different. Some medicines work for some families and some are nightmares for others. If I decided against a medicine based only on the fact that it didn't work for some families, I might be missing one that works really well for Maddie. Having a diagnosis of any kind gives the doctors at least a little information to try to make better recommendations. For example, certain seizures meds would be a waste of time for Madelyn based on her diagnosis, however without the diagnosis, they would be appropriate starting points though ultimately a waste of precious time in a critical developmental period. But rare means that we trust the process, take a wait and see approach for treatments and reevaluate regularly. And rare also means significant fear all the time with each trial and error. Luckily, a diagnosis provides SOME guidance. Unfortunately, even though we have a diagnosis, we don't have answers and we live in the unknown much of the time. I trust that she's doing well today, but that can turn very quickly at any moment especially since we have a very poor understanding of why the complications occur or when the risks are higher. So, because rare is rare, I do my best to "trust" the doctors and yet Iive knowing that they do not know and are making the best guess they can for what is best. And unfortunately for us, that's better than nothing. Sure, nothing is guaranteed with any disease, but mostly there is some good evidence for much of the guidance we receive for disorders that are not rare. So, tomorrow is rare disease day. Why do I care about rare? Because I love Madelyn. I love her spirit, energy, beauty and joy. I love how she has already progressed beyond what we were told was possible and I love that she is writing her own story in this life. Who knows how long her story is or how the story will unfold, but one thing I know for sure is that her story certainly is unique and rare. And that with rare, anything is possible. I care about rare because all people deserve answers and guidance in their treatment, especially when paying so much money for an expert opinion. I care about rare because I desperately want Madelyn and others with her diagnosis to not have to suffer any longer than they already have. Caring about rare means increasing awareness and education so that when we go to the doctor they can at least know what her diagnosis is and means. Caring about rare means that doctors are studying the disorder enough to have some good recommendations. Why do you care about rare? Is is because someone is waiting for a diagnosis out there? And without a diagnosis, they may never get the intervention that is necessary for the most effective outcome? Is it because it could be your child one day that has a rare disease? Or is it because you know the struggle personally? No matter why, please keep talking about rare until it is rare no longer. And take care to never strip someone from their hope. Because with rare, hope is everything and anything is possible. Will you move mountains with Madelyn and change your profile pic, educate yourself and others, talk about rare disease, wear blue jeans for rare disease day and keep encouraging her? She's waiting.... I've always thought New Years is a very interesting holiday. We get a day off to celebrate the end of a calendar year and the beginning of another one. A strange thing in comparison to celebrating religious holidays or other government holidays. Many think of it as a fresh start. A time to reflect on the past year and say goodbye to the misfortunes that may have occurred while celebrating a blank slate ahead. Many set resolutions indicating that they are going to do something different this year to become a better version of themselves. And others look forward to letting go of the pain that came along the previous year. Sure, some years are good, while some are bad, but either way the new year provides hope. Hope that things will be different. A new year provides a new energy, new motivation to begin things that didn't get accomplished the previous year for whatever reason. And each year, as December comes to an end, we begin again with a new hope. Even if our resolutions never get accomplished, even if we continue to follow the same pattern(s) in our lives as each previous year, and even if the pain that we hoped would be wiped clean remains stronger than ever. We continue to have hope that this year might be different. As maybe you might have guessed, I don't really believe in making resolutions on New Years just because it is New Years. I'm all for setting resolutions or goals any day of the year with the intention of making changes in one's life, but I don't think we need a change in a number on the calendar to do this. In fact, all too often it seems that people rely on the New Year to give them the motivation that they need to try to make the changes they want only to fail in a couple weeks/months and then say that it's not their year. I just opened a very fitting fortune cookie which said "The odds of hitting your target go up dramatically when you aim at it." We can aim for our targets any time we like. In fact, we can have hope any time we like. We can choose hope, today, the first day of 2017, or in 5 months. We might need to take a risk, lean into others, and/or be vulnerable but we can choose hope. Wikipedia defines hope in the following way: "Hope is an optimistic attitude of mind that is based on an expectation of positive outcomes related to events and circumstances in one's life or the world at large." I think this definition implies and reinforces that we have a choice of turning our mind to believe that positive things can occur. For many people, including myself, believing in a positive future is difficult. For me it is difficult because I struggle to see the opporunity for a clean slate. I know our challenges will still be there when the clock hits midnight. That 2017 will not be the year when my daughter has an entire year seizure free. Nor might it be the year that she learns to walk or talk or eat entirely by mouth. I struggle to stay positive and not focus on the bad things that I know could happen. I try to prepare for the worst and I convince myself it won't hurt so much when it happens. For many this is the case, especially those that are struggling with illness or grief. I started feeling this way in my early twenties when I first experienced a significant loss and realized that a new year really doesn't mean a fresh start. The wound was still there. And then, despite many "good years," there were many "bad years." And after each "bad year," when New Years would come along, I would just know that the next year would be good to me. And then it wasn't. Or at least I thought. Perhaps, it was all about perspective. I believe the new year hype makes me focus on labeling the year overall as good or bad. And as I was reflecting on this year and trying to do just that, I realized that I didn't want to label 2016 as either good or bad. Because 2016 was both, especially if I challenge myself to see the good. For starters, there were no deaths in the family. After 2 painful years in a row, 2016 graciously spared us. Madelyn accomplished soo many amazing things in 2016. It was a great year developmentally. She started school. And Madelyn endured a lot in 2016; especially many treatment options that failed, remarkably the Ketogenic diet. I, myself, grew in many ways this year and I struggled in many ways. I got tired. Not in the I don't get enough sleep kind of way (though who knows how that impacts things), but in the raising a child with a rare disease and special needs kind of way. While my husband does the majority of the caretaking for Madelyn, getting her to and from all the appointments, taking care of the majority of her daily needs, I work and I worry and I try to get to appointments as often as reasonable. And when I get home, I do what I can. The constant worries and reminders that her needs will be forever and knowing that there is no break makes me tired. And because i'm tired, it clouds my judgement of the year and of judging a new year. I'm tired and I've already decided that the year is going to be hard and I know that I'm probably right. But while I'm not that into new years and I don't believe in new year resolutions and I've already predetermined that 2017 is going to be hard, the new year celebration and hype reminds me of one really important thing. To have HOPE. To choose HOPE. Yes, 2017 will be hard and probably each year after that. My fantasy of an easy, amazing year is just that, a fantasy. Again, each year has its moments, but that doesn't make it bad. I cannot give up hope. I have to continue to believe in Madelyn, no matter how tired I feel. I have to be optimisitic that she will continue to do amazing things. How can I not have hope when she has defied the odds and proves to me each day that she has hope. I believe that she has determination and probably has her own resolutions. Not that she decided today because it is New Years, but that she aims for each day when she discovers what she wants. 2017 will have both good and bad moments and I will do my best to refrain from labeling it as good or bad. Doing so, focusing on the year rather than the day, steals away the hope that each new day brings. I'm going to try and take another lesson out of Madelyn's open book, she can't rewrite her story, but each day she can and does find new energy to write a new page in the overall story, and she sure isn't waiting for a new year to do so. May you all choose hope this year and aim for your goals any day of the year! Since I was little, Christmas has always been my favorite holiday. It is so magical and full of joy, laughter, and wonderful things. Christmas started early at our house. I remember walking home from the bus stop in November and as I approached my house, I saw my dad outside putting up Christmas decorations. I loved it. He always tried to put as many decorations on the house as he could: plastic santas, candy canes, lights on the roof, etc, etc. Each year he'd buy more and he would find a spot for it. Inside, christmas music was always blaring. My dad loved to listen to music and the holidays were full of christmas music. We always had a large tree with as many lights as my dad could fit on it and I couldn't wait to put it up. My mom would decorate the rest of the house including putting up my favorite, very old, cardboard fireplace by the tree. Candles were lit and Christmas cards were written. Cookies were baked and often I would go shopping late at night with my mom to avoid the Christmas crowds. On Christmas eve, we went to church together as a family. Inevitably, I would fall asleep on my mom's shoulder, only to be woken up by her poking me to stay awake. After church, we would ride around and look at the Christmas lights and when we got home we would maybe open up one gift from someone else. My brother would put on the movie the Christmas Story. And my mom would lock herself in the bedroom to finish wrapping all the gifts. I would try to go to bed early. I set my alarm and lay there with so much excitement about Christmas morning. My brother hated how early I would get up so he would come in and turn off my alarm while I was "sleeping." As soon as he would walk away, I would turn it back on. I'd eventually fall asleep and wake up nice and early to enjoy the magic of Christmas morning. I'd slowly creep into the living room, sit by the heater and stare at all the wonder underneath the Christmas tree. Eventually, I'd turn the tree on, pour glasses of eggnog, make my dad coffee, my mom tea, and run and jump on my parent's bed telling them to wake up! After about a half hour of coaxing my parents to get up and picking my brother's lock so I could pull off his covers and coax him as well, one by one they slowly got up and we began Christmas morning. Wishes were granted and there was so much joy with each unwrapping of gifts. My memories of Christmas are priceless. If you would have told me when I was little, what Christmases would be like as an adult, I wouldn't have believed you. No, in my heart and mind, Christmases would always be the same magical thing that they had always been. In fact, even into college, I was jumping on my parent's bed nice and early to try and conserve as much of the magic of Christmas morning as I could. But as life would have it, I have grown up and Christmases have changed. I notice myself desperately trying to recreate as much of my past as I can because those memories are full of so much joy. Moving out, getting married, and having a child means change and new traditions. I always knew that when I had kids, I would have to shift into creating the magic for my child and always hoped that I would love that experience just as much and find it just as magical. But, I find myself struggling to make new traditions and magic when life keeps throwing challenges in our face. Three short years ago, Brian and I headed to my parent's house on Christmas morning. We had already shared with Brian's parents on Christmas eve that we were expecting little Madelyn and we would be telling my parents on Christmas day. My dad hadn't been doing well and was in bed all day. After the rest of the family had left, we shared with my parents that we were expecting. That was the last big milestone of my life I got to share with my dad before he died. He was laid up in bed, in my old room, on Christmas Day. Seeing my dad so sick was very sad. Very different than the Christmases of my childhood. But he was happy that I was having a baby and I was happy that he knew. My dad passed the following March and a lot of Christmas magic seemed to die with him. After all, as all parents who celebrate Christmas are, he was my Santa, who spread the love and magic and hope of the season along with my mom. Two short years ago, on December 12, we were in the hospital with our 4 month old receiving her genetic diagnosis. Not exactly how I thought I would be spending my daughter's first Christmas season. A week later, I got a phone call from my brother that he was diagnosed with Leukemia. Then it was Christmas. My daughter and my brother were sick and my dad was gone. That was a very sad Christmas, indeed. I remember desperately wanting to skip Christmas that year. My brother passed the following July. Trying to find hope and magic during times like this was difficult. I found it in the people around me. People who shared their love and kindness in the spirit of the season. One short year ago, we were still grieving my dad and brother. I was still grieving Madelyn's diagnosis. Again, Christmas was a tough time, but it was slightly better than the year before. We celebrated because that's what you do. I know it still wasn't easy for anyone. But I knew I needed to start to spread magic for my daughter just like my parents did for us. I just didn't know how with all of her special needs. Instead, people continued to spread the magic and generosity to us. And then there's this year. Though nothing significantly bad happened this year (thank goodness), I'd say we're all still grieving the losses in our family. Christmas isn't so magical for me, though I desperately want it to be so. In the weeks leading up to Christmas, I found myself stressed and my heart aching. The holiday season has been stressful with Madelyn's surgery, hospital stays and uncontrolled seizures. Again, I find myself struggling to let go of the magic from my childhood and trying to find ways to spread the magic for Madelyn, who doesn't know what is going on yet. I want so badly for her to have the happiness that I had. She's older now and should be running around playing with her cousins. She deserves the lights, the cookies, the songs, the parties, and the greatest gifts. I want to see her face light up when she opens a gift that she wants. Instead, selecting gifts for her is one of the most stressful things. Everyone asks us what to get for her because they realize her limitations and want to get her something she'll use or enjoy, but with that question comes the reminder that she's not a typical kid who can play with typical toys. I try to get creative, but the truth is we still have gifts packed away in the closet from birthdays and Christmases of the past waiting for the moment when she can play with them. So, often gift ideas become clothes or books; at least I know she enjoys books. I did my best this year to include her in things that I loved like showing her the lights outside, decorating the tree, playing christmas music, having her cut out a cookie, and trying to make her unwrap presents. I want her to learn and I want her to enjoy it...liked I did. We didn't make it to see Santa this year for a variety of reasons including her recovery from her surgery. Seeing Santa isn't necessarily a big deal at her age, but again, it is all part of the magic of the season and laying that foundation. One of my favorite things that I chose to do with her this year was wrap up christmas books and open one each evening to be read before bed. We always do story time before bed and she smiles as I go to pick out the book, so I felt that this might be a way to start a tradition that she would enjoy. She certainly enjoyed mouthing on each book before we would read them :) And I enjoyed being able to do something with her. Because of her seizures, it was hard to stay present and focused on the spirit of the season. Christmas eve, we woke up at 6 am to a seizure and went to bed to a seizure. Madelyn has been more sleepy, likely because we found out she is having more seizures through out the night that are likely making her tired and impacting her sleep. Christmas night, Madelyn had a couple seizures, triggered by noise and sleep. Telling your family to keep it down because the noise triggered a seizure for your daughter sure is not part of the Christmas magic. I wish that for Christmas she could have a break from her seizures. One gift I would love to give her, but I can't. As I struggle to find the magic of the season, I realize that the people around me continue to spread the love and hope of Christmas. One of my favorite things is getting Christmas cards from old friends and family and hearing sweet news like families growing. Connecting, sharing, loving, spreading love and hope. As I've said before and I'll say it again, people are so good to us and this time of year, it is even more so. Madelyn has received many donated toys from the hospital and from her school. And we have received amazing gifts. One of my other favorite things of the season is the candelight Christmas Eve service. During this service, I'm reminded of the true reason for the season. The true magic. The light of the world. The hope that comes along with it. The only things that truly matters. As I navigated through another holiday, I realized that while I am so desperately trying to create magic for Madelyn, it is she who is filling up the magic for me. Not in the ways that I expected when I would have a child or in the traditional ways, but because she is one of those special souls. She's expressive and silly and engaging. She is waving and clapping and giving kisses. She is eager to eat by mouth and drinking eggnog from a straw. She had chocolate pie and mashed potatos by mouth and reached for more. She's cuddly and sweet and blowing raspberries. And she's smiley and full of joy. Not temporary joy from presents, but a joy that truly matters. She doesn't need all that other stuff to find magic. She was created by the light of the world and I believe that He continues to work through her to spread His light. For me, as the magic of the season fades, the magic of Madelyn lasts forever. Gathering around the table this Thanksgiving Day reminds me to spend some time reflecting on the blessings in my life. The beautiful table full of delicious food that we are so blessed to have in front of us is symbolic of the blessings in our life. My table is full of so many blessings.
Mostly, along this journey with Madelyn, we have encountered great kindness. Kindness which was once again shown upon us today by some very dear coworkers of mine. I'm busy changing Maddie's diaper in the living room, while watching the Macy's parade, and Brian looks out the window and says we have a visitor. In walks someone from my job delivering a cooler full of Thanksigiving goodness and treats that a group of my awesome co-workers made and put together. Wow. I'm still amazed! They put together a bunch of delicious things so that we could relax, take care of Madelyn and not have to worry about cooking today. So that we could enjoy the holiday like many others are doing despite the circumstances. I feel so grateful to these individuals that they would take the time out of their busy lives to show thoughtfulness and support when we really need it. It is hard for me to ask for or accept most things or to make a decision about what might be helpful. So when someone asks what we need or what they can do, it is one of the toughest things to answer. Mainly because what I most likely need is for someone else to make that decision since I am tired of making tough decisions. The truth is, the people I work with have never failed to amaze me in the ways they just know how to show my family support and I am extremely grateful for them. I feel blessed that over the past couple years, I have had kind people in my life that show up when I need it most, reach out, check in, send words of encouragement, ask how we're all doing, and even go above and beyond to do something nice to acknowledge the struggle and show us that they're thinking of us. For example, when Maddie had surgery, a gentleman from my church came to sit with us and just be with us so that we didn't have to wait alone, our pastor came to pray with us, and so many of you reached out. These things in general make my heart so full of gratitude and mean more than I can express. I can only hope to be able to pay forward similar gestures in the future. On this Thanksgiving, I'm incredibly grateful for the journey that I am on. I am so lucky enough to have my wonderful husband and the most amazing blessing in Madelyn. While our lives aren't glamorous or full of material things, we have each other and strong bonds of love. We don't get to lead a typical life with Maddie, yet there are so many ways that I am incredibly grateful for the life we do lead. A life that keeps us grounded, grateful, humble and full of perspective. We are lucky enough to know the important things aren't how much success you have, how many things you have or how many awesome things you get to do, but instead are the beauty and simplicity of life and love. Being able to celebrate being alive and well each day with each other. Despite the bumpy road, I am able to see that everything in my life has worked out just as it should, as hard as that is to admit at times. I give praise to a God who has given me the strength each and every day to get through whatever circumstance is thrown my way. While I am grateful for this strength to get through each day, I know that we cannot do this on our own. For this reason, I am so grateful our family and for the growing community of support we are building around Madelyn. All those who move mountains with her with every single word of encouragement you share. I believe she knows and understands. And I want nothing more than for her to feel loved. Love will help her grow. She is a people person and thrives with attention from others. So thank you for showing her love. Don't ever stop. I believe she needs it more than we do and will give it back stronger than we can. You won't regret it. The other huge support we rely on is from those who treat her. The medical team that Madelyn has surrounding her is large and mighty. They are awesome and without them I know she wouldn't be as far along as she is today. We have so much appreciation for the work that each person does with her each time they encounter her and the difference they make in her life and in ours. We feel blessed to be close to the wisdom, guidance, gentleness and understanding of the team that we work with. This list could go on and on. My heart is full of gratitude for so much more. Mostly the things at my table include strength, love, support from others, kindness, God's grace, and those who fill our lives with their hearts of gold and their beauty. I am so grateful for God's graciousness, arms of protection around Madelyn, and for making Madelyn fearfully and wonderfully made. Happy Thanksgiving to you and yours this holiday. What are the blessings in your life? What is at your table? We are so relieved that Madelyn's surgery is over! The emotions that come with your child having surgery vary greatly. Anxiety seemed to take residence within me for the weeks leading up to it and though it is still present, it has shifted. I did my best to block the thoughts and fears that came up for me in the days leading up to her surgery. I knew that it wouldn't be helpful for me to give them life. Yet, I found myself with a yucky feeling right inside of my chest any time I thought of her surgery. As we got closer and closer to her having the surgery, the feeling deepened a bit. It wasn't a feeling that I thought something bad was going to happen, but it was the possibility that it could. The surgery wasn't really a large surgery, but when your child is having surgery, you surrender all control to what happens to them and that is huge. The night before the surgery I told Madelyn she was going to be having surgery tomorrow and that we were doing it to help take the seizures away and help her feel better. I told her that we love her very much and reminded her how strong and brave she is and has been. I held her closer and gave her extra cuddles that night. While there is, perhaps, some comfort in the idea of her not truly knowing she was about to have a surgery, there is also something yucky about it. Sure she doesn't have to worry and be afraid in anticipation if she doesn't know. But ultimately, she wakes up one day happy as can be, and then all of a sudden she is being put under and waking up with what I imagine to be intense pain or fear. I can't imagine what went through her mind, but I will admit one of my fears is that she might have thought we did it to her, that we caused her the pain. Deep down, especially after being with her the last 24 hours after surgery, I know that she doesn't believe this or if she does, she certainly doesn't hold it against us. But that doesn't make it easier to blindside her with things that she can't tell us how she feels about. She can't tell us afterwards what kind of pain she is experiencing or what she needs or ask questions for better understanding. And for me, that is heartbreaking. The waiting is certainly the hardest part. Because we had to reschedule this surgery one time, there was a lot of waiting and a lot of worrying about her getting sick and having to reschedule it again. Living in a bubble, trying to prevent illness during cold/flu season is not fun. Then there is the waiting at the hospital. Waiting with her, then without her while she is in surgery. There is the waiting for the doctors to tell how things are going and for her to wake up from recovery and then the waiting to see her. I was so nervous to see her. I was nervous that seeing her incisions would hurt so much. Seeing my sweet baby's body cut open and scarred was terrifying for me. And once I finally got to see her, it was indeed hard. She was tired and out of it, though awake, and looked sad. I accidentally saw some of the incision and it made me shutter. To be honest, I still can't bring myself to look at it. I don't do well with these kinds of things in general, never have, but certainly not now that it is my daughter. I cringe when I see glimpses of it because it reminds me of the pain that she has to endure, the physical pain from the surgery and the pain of the seizures that she has. And I get so angry and sad thinking about how unfair it is. But I also think about all that she has overcome and how strong and resilient she truly is and how she has already moved on from it. She is smiling and working hard to get back to doing the things that she typically does. And here I am struggling to look at her incisions and deal with the pain. Maddie has been recovering very well overall. Last night, she struggled to fall asleep and as I watched her tired little body try to rest, she would jerk awake and cry out hard cries. It was possibly seizure activity and possibly many other things since she just had surgery. Throughout the night this happened often requiring me to get up, rub her head to calm her and then try to return to sleep only to be woken up to repeat the same pattern. I haven't gotten much sleep and am exhausted. I'm exhausted on a daily basis, but this process wears you down. At that moment last night, I felt so helpless. She was exhausted, she couldn't sleep, and I couldn't do anything for her. I couldn't even hold her. Yet, I felt like it was on me to solve the problem and I didn't know how to. And finally, I had to surrender that I couldn't fix it and try my best to help each of us get the rest that we desperately needed. I know that she is so much stronger than I am. I often let my emotions get the best of me and get caught up in how unfair life can be sometime. And while I am busy doing that, Maddie is literally ear to ear smiles, with bright, twinkling eyes being her silly self. Enjoying life. Not keeping tabs on all that she is missing out on. Like me. For one, I'm really struggling with missing out on Thanksgiving and how once again, something gets taken away from her because of CDKL5. Because we literally got out of the hospital today, traveling or running around on Thanksgiving is not an option. Maddie is recovering, needs her rest and we don't need to risk infection or anyone grabbing or hitting the incision area. Not to mention, getting her in the car is quite the ordeal. We typically spend Thanksgiving at my parent's house. I can't remember a time that I didn't spend Thanksgiving there. That's 30 years of Thanksgiving with my family at my house. But not this year. Living a couple hours away from my family means that Maddie doesn't get to see them much. And so times like the holidays are usually guaranteed family time. But not this year. The past couple holidays have been more difficult with my dad passing, Maddie's diagnosis, my brother's diagnosis, and my brother passing. The holidays were always big days in my house. We had a house full. We ate, went shopping, ate lots of candy, and spent time together. Memories I hold close to my heart now. The magic of the holidays quickly subsided when reality of life set in. The reality that our hearts are hurting because the holidays will never be the same. I desperately want Madelyn to make and have those memories with my family that I have. And she can't. For many reasons. So this Thankgiving, I will yet again surrender and we'll try to give her some new, different memories. It will be quiet and we will try to cook if we are up to it, and some of Brian's family might stop by. And slowly but surely, traditions will form for Maddie as she grows up. And it will be great. But I'm still angry. Angry because we didn't choose to spend the holiday away from most family. Angry because we don't choose a lot of things that happen. Angry because of all the surrendering. But I suppose that is where gratitude comes in. Gratitude that we have family close to make memories with on a daily basis. Gratitude because Maddie is recovering well from surgery and happy. And Gratitude that I can learn so much from Madelyn, for example, she surrenders all every day, without complaint and still finds happiness. Madelyn is so expressive. While she doesn't have a voice to share how she is feeling or what she wants, we have learned to read her expressions as best as we can. She has so much personality, and I desperately want to know what goes on inside her little mind on a daily basis. I love watching her and trying to determine her thoughts. Her eyes and her smile are a window into her soul. I often get caught up in a trance where it feels like I am watching a movie, perhaps in slow motion, where I just sit back and watch her explore the world around her and communicate without words. I stop talking and doing and before I know it, I'm just there gazing at her, feeling starstruck and profound love and wonder. Caught up in her world for a while. A simple, yet complicated world. Complicated because I can't imagine not having a voice or the use of my body the way that everyone around me does.
Then reality sets in. I need to be talking. Talking and describing in order for her to hear the words, so that she can learn to speak them. Learn what they mean and represent. I need to be doing. Modeling and showing her how to use her hands and her body so that she can learn to move them functionally. I need to be teaching and loving and all sorts of things that in most moments, my heart and mind worry that I am not providing enough for her. Worries and wonder that if I did this or that would she be further along? If I spent more time doing the right things with her, maybe she would be crawling or talking more, saying mama or dada purposefully, giving hugs or kisses, eating by mouth, etc. I'm always questioning my efforts yet reassuring myself that this life is hard and that I'm doing the best I can and that she will do things in her own time. Always trying to find the balance. When you're around someone all the time, you get used to them. You get used to their quirks, and their quirks become normal. Behaviors that you once thought were different or strange become the norm and eventually you stop noticing the differences. Until you're in a similar situation with someone else. You're reminded of the differences yet again. This is often my experience with Madelyn. I watch her and learn her. And the things she does (or doesn't do) become normal. Until I see other kids her age. Or people ask me questions. Or I see other kids younger than her doing far more than she can. For the most part, I've accepted her development for where it is at. But I can't predict how I will respond to noticing the differences. Sometimes it hits me a little harder. The reality is it makes ME so terribly sad when I try and put myself in her shoes and how she might feel seeing others be able to do something and to not be able to herself. But is SHE really sad because of this? And then there are the times where I see her for all that she really is. So pure and genuine. Smiling and silly or frustrated and stubborn. When we're playing and she laughs and giggles (which gratefully come more easily these days), when she's watching Sponge Bob and I can't get her attention because she's so caught up, when she's sleepy or crying or mad because doesn't want something, or when she smiles and lights up at the sight of the things she enjoys (books, the Ipad/tv, her favorite toys, her puppy dog, spinning around), it all feels so normal. She's just a kid. And she's only two. And so often I remind myself there are so many similarities between her and other kids her age. She's a kid who likes to have fun, be silly, laugh and snuggle. And she certainly doesn't seem to get caught up in what she can't do. Yet, as each day passes, I notice the similarities to other kids seem to lessen, perhaps slowly, but nevertheless. The other day was our first day really out of the house with the wheelchair when we took her to an appointment at the main hospital. We decided to take the wheelchair and wow does it sure get a lot of attention! Especially the lights! But I know it is more than the lights, it is the fact that she is so little in a wheelchair. It is different. How many 2 year olds do you know rolling around in wheelchairs? Though she seems to love the chair, it is hard to see her in it. I'm torn between thinking that she doesn't need it, we got it way too soon, we jumped the gun and thinking, she's 2 and she doesn't walk and she needs the support and she may not walk for a long time. I'm torn when I consider how she's just another kid and then I think that she may be a kid but she's a kid that can't run around and play and isn't able to play with toys like other kids do right now. I go back and forth between thinking, "she's not that sick" to thinking she qualifies for make-a-wish, and she has a genetic disorder and a feeding tube and a wheel chair. I go back and forth between thinking "we don't deserve those resources, there are so many kids/families who need it more" to "we need all the help we can get." I try to find the balance. Because mostly all of these thoughts are true to some degree. And the balance helps me find grace for myself and for our family; grace, which is necessary to moving forward and finding happiness. One of the things that I struggle with the most with Madelyn is how much to push her and knowing how to do so. I want to accept her for all that she is and help her grow to her full potential. I want to give her opportunities to be the best she can be. After seeing many specialists over the past couple years, all of the things we were to be working on quickly became overwhelming. I was overwhelmed with how to accomplish it all and discouraged when we would return to an appointment only to share that we didn't do what we were supposed to for whatever reason. For whatever reason usually was because we were exhausted, or we didn't know how, or we didn't have time, or we couldn't possibly get it all done even if we tried, etc. I felt guilty. I felt like a bad parent. I felt that they thought I was a bad parent and that I needed to justify my behaviors. I quickly realized that the specialists, no matter how good they are, aren't specialists in our daily lives. They don't live our lives with a kiddo who has complex needs far beyond their specialty. They don't live our lives with the stress of just being diagnosed, of being new parents, of trying to manage daily life including work, the bills, appointments, relationships, of trying to teach Madelyn how to do everything AND allow her to relax and just be free of the medical world for a while. They don't live with the emotions and the lack of knowledge of how to deal with not just ONE thing, but with EVERYTHING. And when I realized this, I found more grace for myself as a parent. I've been working on finding balance and not feeling guilty. The thing is, I want to be able to do everything, because doing everything gives us the best chance at happiness, right? But is that really true? I think if we do the best we can, and we love Madelyn well, then Madelyn has the same chance at happiness as everyone else. I think we make an assumption that able-bodied people are happier or somehow better. But one thing I know for certain is that Madelyn, despite her limitations, is HAPPY. I will challenge myself to help her be the best she can be while continuing to be happy. We will learn and grow through exploration of the world, but also through love and just being in the world. Perhaps, that means she doesn't talk or walk. I will challenge myself to trust that she can still be HAPPY despite the messages in the world or despite my own feelings about it. And I will challenge myself to let go of the idea that the same is better. Madelyn will make a difference in this world because of her differences. She will help people in more ways than I have in my entire life. I hope she already has. Because, Madelyn is living a life that doesn't play by the rules. A life that is messy, yet full of wonder. Will she be like all the other kids? No, indeed she won't. And I will embrace that. What a beautiful thing that can be. Brian said to me the other day, "We must be doing something right, because she sure is happy." We certainly are doing something right. This life isn't easy, but mostly if we love her well and do the best we can, she has the best chance at happiness and that is all we want for her. |
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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