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?
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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. As the holiday seasons approaches, there are constant reminders of all the things that need to be done before Christmas gets here. The Black Friday ads are out, gift lists are being made, trees and decordations are being put up. It seems like in the midst of this, Thanksgiving is another day on the calendar that we gather together, if we're lucky, before we return to our to do list. Really, now a days, Thanksgiving begins the holiday shopping season. The line up: Thanksgiving, Black Friday, Small Business Saturday, Cyper Monday. Lots of great deals to get the perfect gift for those we love in this season of giving. But the season of giving is bigger than our family and friends for many. I'm grateful that in recent years, we as a community, have added Giving Tuesday to that line up. Giving Tuesday is a day recognizing that many of us are blessed beyond measure and a day that provides the opportunity to give generously to those who need it, to charities and organizations who provide for people in need. After all this is what the season of giving is truly all about it. On thanksgiving, we give thanks for what we're grateful for, then we buy and give gifts throughout the season to show love and appreciation to those we care so much about it, and then we share our resources with charitable organizations or people to give back to our community. The season is full of magic and love for many of us with lots of memories, gifts and happiness. But for many others, the season is full of hurt and sadness and discouragement, especially during this season as they interface in this world with constant reminders of their lack of resources, grief, illness, disability or other hard times. Giving Tuesday is a day where we can show support to those who have fallen on hard times. Throughout this journey with Madelyn, we have been blessed by so many people and organizations. We are lucky to have access to many resources that have only improved our lives and lucky to have wonderful friends who have provided support. Madelyn was diagnosed with CDKL5 nearly 2 years ago during the holiday season. Just shy of two weeks later, my brother Bill was diagnosed with Leukemia. Needless to say, Christmas 2014 was a tough year for us in many ways. I remember struggling with her diagnosis, struggling with what felt like at the time "having" to do all the Christmas things while at the time same having so many fears about what Madelyn's diagnosis meant for our family for our daily lives. Could we even afford gifts? What were her medical bills going to look like? I had so many worries about a lot of things at that time, of course I still do, but one thing that I learned through the past couple years is that people are so kind. I'm forever grateful for how people have been so kind to us. People may never know how much I I truly appreciate their love and support and feeling not so alone in this journey. Ah but I digress, my gratitude post will be coming soon. Ultimately, others aren't so lucky. Our personal circumstance seems so small compared to what others deal with. But it is not about comparison. It is about recognizing a need, having compassion, sharing love and hope and giving what you can. I can't imagine going through this life without the love, resources and support that we have received from many. And I hope that others can continue to benefit. I feel passionately about giving back to these organizations in ways that I can because of their gratitude to us. I am listing a few organizations that are so vital in the community both globally and locally and I hope that you'll consider giving to them as you consider who you might give to this holiday season. Please also consider the needs of individuals and families that are struggling. I certainly recognize that some people aren't in a position to give much if anything at all. But for those of you who are considering giving this holiday season, please consider who and how you can give back. Here are just a few of the organizations that impact Maddie or our family. Thanks for giving! IFCR - International Foundation for CDKL5 Research - the most dear to our heart-we desperately want a cure for CDKL5 so that Madelyn and many others like her can live an improved life Mission: To lead the way in finding a cure and treatments for CDKL5 disorder by funding global research efforts, and increasing awareness of CDKL5 disorder, while enhancing the quality of life for those affected by CDKL5 disorder, by providing information, programs, and services. http://www.cdkl5.com/Default.aspx Katelyn's Kloset - a local Columbus organization that has provided us with adaptive toys and given Madelyn the joy of an adaptive toy car which she can drive on her own by pressing an adaptive switch. Mission: -Our goal is to provide all children the opportunity to play with developmentally appropriate toys and equipment in an environment which will support their changing needs and embrace their differences. http://www.katelynskrusade.org/?page_id=376 Nationwide Children's Hospital - Madelyn receives almost all of her services from NCH. NCH is an amazing place for the kids and we're so grateful to be so close to it. Mission: Nationwide Children's believes that no child should be refused necessary care and attention for lack of ability to pay. Upon this fundamental belief, Nationwide Children's is committed to providing the highest quality: Patient Care Advocacy for children and families Pediatric Research Education of patients, families and future providers Outstanding Service to accommodate the needs of patients and families http://www.nationwidechildrens.org/giving The Mother Ship, Inc - local Columbus organization that focuses mostly on mothers with children of special needs Mission: Our mission is to provide social, educational, emotional, health and community supports to mothers of special needs children in the Central Ohio area. We don't "treat." We can't "cure." We do not know what lies ahead in your journey, nor can we tell you the right way to go. But we can make sure you do not go it alone. http://www.themothershipinc.com/ Make A Wish Foundation - a foundation that grants amazing wishes to kiddos with life-threatening illnesses. While we haven't applied for a wish yet, Madelyn is eligible to receive a wish from Make A Wish because of her diagnosis. Mission: Make-A-Wish serves a unique, and vital, role in helping strengthen and empower children battling life-threatening medical conditions. http://wish.org/#sm.0000j404tj1746dzywd2r898so7p7 The PiggyBack Foundation - an organization serving the Norwalk, OH area that served my brother and his family before he passed away from Leukemia Mission: The Piggyback Foundation helps families maintain a sense of normalcy during times of serious illness by providing assistance to meet the emotional needs of the children. http://www.thepiggybackfoundation.org/ Leukemia and Lymphoma Society - in honor of my brother Mission: The mission of The Leukemia & Lymphoma Society (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.LLS exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients. http://www.lls.org/ American Diabetes Association - in honor of my dad who passed as a result of complications from his diabetes Mission: We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes. www.diabetes.org Amazon Smile - if you are doing any shopping through amazon please use the link below and choose the charity of your choice. A portion of your sales will go to the charity you selected! https://smile.amazon.com/ So many things have been happening. So many things which have lead to many emotions both good and bad. I'm excited to share many things and perhaps overwhelmed with the emotions that come with them. The biggest of all is that today Maddie got her wheelchair. Her first, very own, big girl wheel chair. In all its glory: it is purple (for epilepsy awareness and because purple is just fun), it has tiny little wheels in front that light the way (just like Maddie's smile), it has an IV pole for her feeding pump, and it has WHEELS! Big wheels! I'm so grateful for a wheelchair with wheels (wheels that I believe she may eventually learn to move herself)! While I've been excited about it since we scheduled the appointment last week, I felt all sorts of mixed emotions when I saw her in it today. She looks so big and so tiny in it all at the same time. I'm both excited and sad at the same time. I'm both hopeful that she will walk someday and shaken by the reality that she qualified and needs a wheelchair. I'm fearful that we made the wrong decision and confident that we are meeting her where she is at. And I'm filled with sadness as I see her little body in the wheelchair and am reminded of my dad. Sadness and comfort as I so badly wish my dad could know her and see her and be wheelchair buddies with her, but I am comforted to know that they are so similar in many ways. They would have been so good together. My dad would have been so proud of her. He could have showed her that she's not so different because she has a wheelchair and he would have showed her how cool she can be and much fun she can have in her new wheels (probably by playing Proud Mary for her). My dad amazed me when he walked me down the aisle at my wedding and I know that Maddie can and will amaze me and walk with me someday too. Because, I'm constantly amazed by her awesomeness. Daily. After a rough day today, I call home, like I usually do to let Brian know I'm on my way home. Brian tells me that Maddie knows when his phone rings in the evening that I'm coming home and smiles. Sometimes, he gets her excited and lets me talk to her for a few minutes despite being 20 minutes from coming home. Tonight was one of those nights. "Maddie, it's momma! Momma's coming home." He holds the phone up to her ear and I call her name and tell her I love her. And I hear a beautiful shriek of excitement on the end of the phone and can hear her smile, which Brian confirms. She's amazing. And when I come home and I see her from the stairs and she sees me and has a big smile. Amazing. And when we're downstairs talking to daddy before bed and I tell her to say goodbye to daddy because we're going upstairs to get ready for bed and Brian waves and she STARTS WAVING her hand! And then does it again! AMAZING! We've been trying to teach her to wave for a long time. And as she's started to use her hands more purposefully, she has recently begun doing the waving movement. The movement has made us question whether she is purposefully waving, but we've had our doubts, until today. Brian told me that she waved twice when saying goodbye to grandpa on facetime and then the two instances that I just described. Absolutely amazing. I can't help but get excited and share the joy that I feel when she does the unexpected and she excels beyond what we were told she would do. In other good news, Maddie went for her 6 month follow up to the orthopedist for her hips and her x-rays show that her hips are starting to form normally! The doctor doesn't need to see her for another year and feels that everything looks good right now. I didn't realize how worried I've been about her hips until I heard the good news and felt the relief that her hips are going to be okay. If you don't know, Maddie had hip dysplasia as a result of being breech, in which she had a to wear a harness for quite sometime. The last visit, the doc was slightly concerned because she wasn't walking or sitting to be able to help her hips form and develop. So, since she doesn't walk or stand, I've been nervous about how her hips would develop. It is so good to hear they are doing well. Finally, we rescheduled Madelyn's surgery that was canceled as a result of illness. We have to wait at least 4 weeks from the completion of an illness before the hospital will allow her to have surgery. That means if she gets sick the day before the surgery, like last time, we have to wait at least another 4 weeks. So, we wait again until the Tuesday before Thanksgiving. And we hope that she stays well. We have had many mixed emotions about having to reschedule. And quite honestly, I'm angry about the whole thing. I'm angry we're in the middle of sick season. I'm angry that she got sick and couldn't have the surgery as initially planned. I don't want her to have the surgery because I don't want her to be in the position to have to have surgery and deal with the potential risks. I'm angry that we're in a position where we have to decide whether to keep her in a bubble to prevent sickness or allow her to be a kid and risk her getting sick and delaying the surgery. I'm angry that we have to have surgery two days before the holiday, which means that we won't be doing much of anything for Thanksgiving. I'm angry that the seizures steal so much. I'm angry that we might wait and prepare and she might get sick. I'm angry that even if we do have the surgery, we have to wait around 8 weeks before it will be at its full potential. There is so much pressure. She's having daily seizures and we're putting hope in this device to help treat the seizures. But this process can't start if she gets sick. Which means potential months before we can see a decrease in her seizures. And in the end, it may not even work. AHHHHHHHHH. Life is full of ups and downs. Sometimes lots of ups and one big crash down or sometimes a lot of downs and little ups. Mostly, I'm working on focusing on the ups and having gratitude for what I can. I'm working on praying through the downs and still focusing on the recent ups. It is easy to be bogged down. The process for Madelyn's wheelchair was lengthy, tiring, exhausting and testing. We had many frustrations, phone calls, and bumps so to speak along the way. As of last week, I still had no clue why we were STILL waiting on this chair. So, I called our DME to follow up. In a nutshell, our state insurance needed renewed by Oct 31st. We had submitted and done what we needed to on our end and were awaiting approval (which can take a long time and therefore cause problems). In the event that we didn't get re-approved, the wheelchair would no longer be covered after Oct 31st. I received a message back from our DME that told me that I needed to submit for renewal (already did this), contact the insurance (no, I've already done what I need to do) and that they weren't going to be able to get the chair in before the deadline given to them by the insurance company. "It's not going to happen." WHAT!? I'm sorry it took you two months to even do your job and almost 6 months total for this annoying process, but you WILL NOT tell me that I will have to pay for whatever our insurance doesn't cover (including the wheels that were denied by primary insurance). And so I told them. And I expressed my frustration to a couple of people. And even though in the end we received our approval, an extension of the authorization and finally the wheelchair, it saddens me that I could have even been in this position in the first place. At the end of my complaint process, I was finally validated by someone with words about our process and informed that many people had been fired because of their practices over time (I can understand why). The state supplemental insurance is provided because the state recognizes the financial burden of having a child with a medical handicap. And it is there to help provide coverage for things that the average child doesn't need, like a wheelchair. As a social worker, a mom, a mother of a child with special needs, I feel VERY strongly about advocating on behalf of those who don't have the resources to do it themselves and to prevent people from being taken advantage of in situations like these. I've had far too many moments that if I didn't know better, I would have been taken advantage of. Ultimately, I encourage you to do your research and know what your rights are and fight for it. Because no one else will. And so we have a wheelchair. Maddie waved. Maddie's hips are good. Maddie's surgery has been rescheduled and her seizures continue. All in all, Maddie is amazing. Ups and downs, yes. But round and round and round we go. |
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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