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/
0 Comments
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. It's been almost exactly two years to the date that Madelyn had her first seizure. I certainly didn't know at the time that it was a seizure that she was having. Her eyes glassy, arms jerking slightly for about 30 seconds. I didn't know that she would go on to have hundreds of seizures up to this point even with being on an average of 3 seizure medications at once to try and control them. I didn't know that she would be diagnosed with a rare seizure disorder that is known for difficult to control seizures. AND I certainly didn't know that I would live in fear every single day of what the seizures might steal from her. I was terrified of what was wrong on that day. I worked hard to convince myself that I was just a new mom panicking for nothing. However, that was proven wrong. I have remained terrified through the entire process including the start of the seizures multiple times a day, to the 1st EEG and the many thereafter, to waiting on the results of the EEGs, to the first hospital admission, to the next, through the diagnosis, through each doctor visit, through each night, through each change in medication, through each failure of medication and treatment option (so far 5 medicines and the ketogenic diet), and through each seizure as they currently occur about daily and vary in length from 3-5 minutes.
It feels like I am constantly holding my breath. Holding my breath throughout each seizure, wondering if I will need to administer the rescue med. Waiting for any of the risks that we've been warned about to rear their ugly heads. These risks include medication side effects, regression of skills, and the scariest of all....SUDEP (sudden death of epilepsy). It feels as if we are fighting a losing battle at times against these terrible seizures. The way it was described to us by our neurologist is that she may respond to some medications, but it is likely that after time (an undetermined amount of time) it is likely that her brain will find a way around the medication and the seizures will return. Not so reassuring. And this is what has happened so far. BUT, I hang hope on the fact that Madelyn isn't having hundreds of seizures a day like some other kids with her disorder and that there is not much known about this disorder or how some medications may help. I'm so fearful that her seizures will increase and ramp up. After all, our doctor told us that this will likely happen too. That they'll get worse. That they will be difficult to control. That she will likely develop new types of seizures over time. And again, this is what has happened so far. In fact, at our last neurology appointment, the doctor walked in, asked how things were going, and as we told him about the increasing frequency of seizures, he shared that he isn't surprised and that she seems to be following the typical course of CDKL5. And so, like I said, I continue to hold my breath. As I'm writing this, I'm interrupted by....you guessed it, a seizure. Madelyn's been asleep for about 90 minutes and it is usually around this time that the seizures happen. As of late, it has been less predictable but let's be honest, her seizures are anything but predictable. Lately, I have been waking up in the middle of the night to her having a seizure. I sleep with her. Yes, I still sleep with her. Honestly, I'm terrified not to because of the seizures. Typically, because I'm right next to her, I can hear the change in breathing and I know. Otherwise, on nights like tonight, I know the seizure is happening because I'm watching her on a monitor. I see her eyes widen, her arms spread and then begin to convulse, and then I rush upstairs to be with her. I can't do anything else but be with her, make sure she is safe and watch the clock in case her seizure lasts longer than 5 minutes and I have to administer the rescue med. Again, I'm holding my breath. I don't turn on the light because I don't know if she's sensitive to the light. I sit there in the dark watching and waiting. It takes her what feels like forever to take a breath after her first big convulsion. I remind myself to breathe along side of her breath. Breathing changes are common for her. Her arms jerk every so many seconds and she starts the seizure off with grunts and then they turn into screams. Really horrible screams. I rub her hands. I tell her I am there with her. Sometimes, I tell her it's okay and then I think to myself it is NOT okay. Generally, the seizures last about 4 minutes around which she starts crying and moving around slightly indicating that she's coming out of the seizure. Typically she cries for a while and no amount of consoling seems to help. And then, she goes back to sleep. And it is done. Except, I don't really know that. I have no idea what she is experiencing. If she has headaches or pain or discomfort. And, I may never know. I want more than anything to be able to have what seems like the unattainable "seizure control." It's not infrequent that I get reminders from either the doc or the nurses that this might be the best we get. But I won't give up hope. I've seen many kids gain some control for a decent amount of time, and as long as Maddie remains happy, I'm willing to try whatever we can to prevent these things. Unfortunately, sometimes it is a balance of having seizures or having a good quality of life. What a terrible decision to make that is. For now, we continue to trial and hope and pray and wait. Wait day by day while tracking and logging seizures hoping that today none have to be logged. Or tomorrow. Because seizures aren't just seizures. I know that in the past didn't realize how detrimental and scary and horrible seizures are. I thought they were just seizures. I didn't know the fear. But now I do. I know that I'm fearful that the seizures will cause her to regress. That she'll be tired and not able to continue to work towards her goals. That we'll lose her personality. That we'll lose her smile. That she'll lose her vision. That she'll have a seizure that doesn't end with or without intervention. That I won't know that she's having a seizure. That the seizures will decrease her muscle tone and make it difficult for her to do the skills that she has works SO darn hard to attain. I'm sad for her. I can't imagine how scary it is to have seizures daily. To not know what they are or what she just experienced. To feel their effects and not be able to communicate with anyone about it. To not be able to tell us what she wants or if something we're doing isn't helpful. To not be able to tell us how the medicine affects her. This makes me so incredibly sad. While I am incredibly sad, I believe Madelyn is trying to teach me to stop giving the seizures SO much power in my life. She certainly doesn't. She wakes up like nothing happened. She SMILES so bright that you wouldn't have any idea that she just experienced such horror. And she pushes and works herself so hard to learn and attain new skills that she isn't giving seizures the power to take over her life right now. I'm so proud of her and all that she has accomplished despite constant setbacks. And how she radiates light and joy through it all. She is teaching me to breathe again. I'm learning to breathe when I see her smile. When I see how strong she truly is and how happy she is. As I think back to the first time she had a seizure, I don't celebrate this anniversary. What I do celebrate, though not enough, is Madelyn's resilience. That she is a constant source of inspiration. That no matter how many seizures she has, she will always inspire me and hopefully those who come in contact with her. I celebrate that the very being that I gave birth to and and breath to is teaching ME to breathe, to fight, to have hope and believe. I love plans. Ask Brian. It's pretty common on the weekends for me to say to him, "what's your plan for the day?" I think it drives him nuts, most days. In fact, I KNOW it drives him nuts, because he tells me so. He usually tells me he doesn't have a plan and that I need to relax and let whatever happens, happen. And I usually respond with, "I can't." Plans give me structure and provide me with a sense of organization and peace. Perhaps the peace is an illusion. But I know that I definitely don't have peace when I try to go with the flow of the day and let things happen. The funny thing is I KNOW plans don't ever go as planned. So why do I rely so much on them?
When Madelyn was diagnosed, life immediately became chaotic. I suppose it already was, prior to the diagnosis, when she started having medical concerns. But it became REAL, real fast when she was diagnosed. We KNEW the future was unknown and there was nothing we could do about it. That should have been my first lesson in letting go. Ugh, if only I could do just that. So, the crazy life began. A life of digging out of the depths of an unknown reality and coming to terms with the day to day that is so different than the day to day i had PLANNED. I struggled with letting go. Letting go of my hopes and dreams for Madelyn's life the way I planned it. Letting go of my hopes and dreams for our family's life. Letting go of what I thought was going to happen. NOPE. Plans? What plans? Just throw them straight out the window. I was now faced with an unclear path and it was overwhelming. There were new physicians to link with, new appointments to make, medicines to organize, info to learn and resources to find. On top of that was be a mom and deal with the everyday mom stuff like breastfeeding and pumping, manage everyday life, deal with the emotions related to Madelyn's diagnosis, work and be productive at my full time job, continue to be a good family member in a time when my family really needed it (My dad died when I was pregnant and my brother was diagnosed with Leukemia only about a week after Madelyn received her diagnosis), be a good friend and oh yea, take care of myself. I found myself looking into the future, the near future, with panic and fear. My new motto became and still is take one day at a time. No longer could I trust that I had enough information about the future to confidently make plans nor could I handle the stress of thinking about it. And I certainly wasn't ready to let go. This was at a time where I REALLY had no idea what the future would look like. I know we never do, but when it comes to being told that your kid has a very rare genetic disorder, could have hundreds of seizures a day and will have severe delays, the future sounds nothing like a future I've ever thought about or could imagine living through. So, one day at a time got me through. Not plans. Living moment by moment and focusing only on the present is what I needed. And soon, that led to having more information about the potential future. I lived day by day and Madelyn got older. Even in only 2 years, we learned that her seizures weren't as severe as hundreds a day or even multiple a day. We learned that she is making progress developmentally and isn't as severe as she could be. We learned that the future I had planned upon hearing her diagnosis, isn't as horrible as I planned it to be. Overall, we learned that there is hope and the future isn't as dark as those initial days. And we learned we could do it. Even without knowing what the future would maybe be like and without making plans. Okay, so this all comes at a time for me where I am struggling with this. I am doing so much better than I was less than 2 years ago. But I'm still struggling. Madelyn has failed several seizure medications and treatment options and continues to have regular seizures. Our neurologist recommended that we have the VNS, vagal nerve stimulator, placed to try and control seizures. It requires a surgery, with risks of course, and is a more permanent option i.e. there will be scars that can't be taken away if it doesn't work. I'm not thrilled at all with this option, but when the neurologist expressed concern that she is at a higher risk for sudden death of epilepsy (SUDEP) because of her night seizures and told us this is the only option that has been shown to lower the risk of SUDEP, it was a no brainer. So, we scheduled the surgery and planned it. And wouldn't you know, Madelyn got sick the day before. She was supposed to have her surgery on Friday. We went in to meet with the surgeon and she had a fever. After reviewing risks that I didn't like, he informed us that she couldn't have the surgery because of her fever. His response, "it's no ones fault, we'll reschedule." When I shared my fear that it is the season for sickness, the nurse shared: "That's why I tried to rush her in. We'll keep playing this game if we need to." So now we have to wait 3-4 weeks before they will operate. UGHHHHHHHHHHHHH. A big fat UGH. I didn't think it was anyone's fault. That's not why I am sitting here with tears in my eyes. No, I'm upset because I'm the one that has to watch my daughter struggle with seizures day after day. The fear in her eyes as she is having them, the screams of terror. I'm the one that has to worry about the risk of SUDEP each day and night. The one who has to pump my daughter full of medicines to try and prevent seizures. The one who has to clean up vomit because the GI doc is waiting till after "the surgery" to make too many changes to help her re-occuring vomitting. So no, I don't care whose fault it is and no I don't want to keep playing this game. I'm upset that I anticipated this surgery, which I don't really want her to have, but am trying to have hope that it will be better for her, and now she can't have it for another 4 weeks or longer. I'm struggling with fear of what the future will be like if we have to wait 4 weeks. So what happened to day by day? Well, no one ever said it was easy. I have to constantly remind myself of that. There are constant reminders of the future and the plans I could be making with every worry I have or every facebook post I see. Being a part of special needs support groups online has its pros and cons. It is a daily battle for me where I consider various extremes of deleting my facebook, removing myself from groups, or obsessively reading all posts. You see, this journey is isolating because not many people get it. People don't know what to say and instead say nothing at all. I'm guilty of this too in different circumstances. But it then leads to loneliness. So finding a group of people that get it, is so important. On the other hand, finding a group of people with a commonality doesn't mean that each experience will or should be the same. Just as our future emerged differently than what we initially were told to expect, each person's journey and future is going to be different. The risk? Well the risk, for example, is that I might choose to avoid a medicine that the group spoke negatively about, when in fact it could have been "the one" that helped get seizure control for my kid. The group might give guidance to prevent pains in the future or it may give guidance to cause more pain in the future. It may help make plans or it may crush plans. And if anything, it is a constant reminder of the future. As I said, the daily battle ensues. So as I work to reconcile the latest emotions of not being able to have the surgery as I planned, I remind myself of my motto. I need to get back to one day at a time. I just re-read a quote I found and have posted on Madelyn's Facebook page that helps me remember that she is who she is no matter her genetic disorder and her future is not limited, no matter what. "This is the first time there’s ever been you, So I wonder what wonderful things you will do…" I love this. It is letting go of expectations and plans, and letting things happen. Without restriction. It isn't putting too much on what other's experiences are or what the odds are, but instead it is living our own life, day by day, with the beauty of each day being a new day with all new hope. It is taking one day at a time and cracking open the joy or fear or pain that comes with it, but letting go of it when the next day arrives. All we have is today. The only thing constant is change. Plans? Who needs them. Embrace today. Embrace change. Let go of your plans. (Wow, I sound like a therapist. ;) ) Want to make plans? Nope, I'm taking one day at a time. I wake up and am laying in bed. I'm off today for a variety of reasons, mainly because we have several appts and Madelyn was scheduled to have surgery tomorrow. But also, today is our 4th wedding anniversary. We've been married 4 years, got engaged 5 years ago and have been together almost 7! As I lay in bed, I think back to my wedding day 4 years ago, reflect on the day and reflect on Brian and I's relationship. What a journey we've been on. I realize that 4 years isn't really that long, but we've lived lifetimes in this time. I met Brian at a time of my life that I had just had a significant loss and couldn't imagine starting a relationship. In fact, I remember thinking at the beginning of our relationship, that it wasn't going to last. I just wasn't sure I was in a place where I was ready. But, as life has consistently shown me, unexpected things happen at unexpected times. Brian and I spent our first date chatting for hours over lunch. While we were both nervous, conversation came naturally. Over the course of the next couple years, we spent time getting to know each other, falling in love, discussing dreams of the future, and eventually planning a future together (as all good relationships go). We had the most perfect engagement, which occurred on my parents 41st wedding anniversary where my family had gathered at a lake house for the weekend. I couldn't have asked for a more perfect day to get engaged to the love of my life. We then spent the next year planning our wedding day. After many stressful moments, and pinterest projects (Brian tried to ban me from Pinterest :) ) October 13, 2012 was here! It was my wedding day! Of course we had an exciting day planned. One that included a lot of hard work, planning and special touches that we did ourselves to make it personal to us. And while I loved how everything turned out, it isn't the details that I spent a year planning that I remember. In fact, many of those details I've forgotten until I see pictures. What stands out most to me about this day, is the peace I felt as I stood with my father in the back of the church about to walk down the aisle. A peace, so great and strong (that I had never felt before) that I knew that I was making the right decision and that God was guiding me to this person. That moment is SO vivid in my mind and one I cherish. Of course, the rest of our day was a magical, stressful whirlwind where we had a lot of fun and were glad that everything went off without a problem. But let me go back to that peace I felt. Remember how I mentioned that significant loss? That fear that I wasn't ready? Well, while I didn't have these fears as our relationship went on, looking back that peace was exactly what I needed. Here I was at 26 years old, someone who had already loved and lost. I certainly didn't want that to happen again, no matter how it could occur. My heart couldn't handle it. And when you're about to commit to someone for the rest of your life, you want to know that it is going to be the rest of your life. For me, the peace was the confirmation that I didn't know I needed, that I would be okay, more than okay, that I would be loved and protected forever by this amazing man. Four years later, I can honestly say that this is the case. Brian has been my rock through this life. In the beginning I didn't know if Brian could handle my past. How would he respond? Well let me tell you, he responded perfectly. Brian may never truly know or understand how his kindness and gentleness and understanding at that time helped me fall deeply in love with him. Life has been tough during the years we've been together. Sometimes, it feels as if we can't catch a break. But through it all, that kindness and gentleness and understanding remain and we've stuck close together and make a great team. Becoming parents has been a challenge. About 2 years ago, Madelyn had her first seizure. Prior to that she was diagnosed with hip dysplasia. We started the special needs journey early on as parents. I was worried how Brian would be able to handle it. He's suffered from a lot of random physical symptoms through the years including headaches and pains (which were finally diagnosed as fibromyalgia). And I was worried it would be too much for him. But what happened, is quite the opposite. He stepped up. He found inspiration in Madelyn and chooses her every day over anything else. My love for Brian has only gotten deeper. Brian is an amazing father. The best father that Madelyn could ever have. He is lucky enough to be a stay at home dad and caretaker for Miss Maddie. They are together all the time. Because of this, they have the most amazing special bond. The way Madelyn looks at Brian is so beautiful and amazing. It's like he is her ENTIRE world when she is staring at him. The way he interacts with her, cares for her, makes her laugh and SMILE so bright makes my heart so full of joy. They have so much fun together, and so much love for each other, and while sometimes, I wish I shared the bond that they have, I wouldn't want it any other way because it is such a perfect love and bond. That peace I told you about? That understanding and kindness? It was all leading up to this. Leading up to the moment where the man I married would become the father of our child, and would be the most amazing thing in her life. In OUR lives. Where day by day, I would stop in awe of their love for each other. Where day by day, my love would get deeper and deeper as a result. I have so much respect and admiration for Brian and what he does for Madelyn. I work full time and he takes care of Madelyn full time. It is what is right for our family given many different circumstances. He has very long, tiring days taking care of her, taking her to all of her appts, making phone calls, organizing our lives to make sure everything stays on track, watching her struggle and comforting her when she needs it. I've told Brian several times, but I truly believe that his calling in life is to be a parent, but not just any parent, Madelyn's parent. He is laid back and fun. Organized and disorganized. Structured and flexible. Positive and encouraging. He gives Madelyn the balance and support in life that she needs. For that matter, he gives these things to me as well. This life is hard, but Brian and I are a team. We were a team before Madelyn and we're even more a team with her. This life would be so much harder without him by my side, without us being able to work together and be partners through this journey. I'm so very grateful to have found the love of my life, who gave me life's greatest blessing in Madelyn, and who works every day to support, love and protect us each and every day. I'm so grateful to have that peace from 4 years ago, still stirring strong in my heart. Brian and I were having a conversation the other day after I informed him I had forgotten a dose of a med. It led to a brief discussion of how there's a lot going on and a lot to remember and manage. One of us followed up with how sometimes we wonder what life would be like without all the medical stuff, if Maddie was a typical kid. How would life be different?
It wouldn't be worries about medication doses before I even open my eyes in the morning. Instead, it would be worries about what my toddler might be getting into before I even open my eyes in the morning. It wouldn't be feeding through a tube, worries about whether she will get tangled in the tube at night, worries that she'll pull the tube or even worse the button out, constantly trying to stop her from eating the tube, worries that she'll end up covered in stomach contents because the port came undone, worries that the next flush of water will trigger her to vomit, remembering to change her button every 3 months, worries that the redness around her button is an infection, phone calls to order formula and bags and supplies, trying to find a place to store all these supplies, spending at least close to an hour a day total cleaning syringes throughout the day, then preparing formula, finding the right syringes where the numbers haven't rubbed off, remembering to flush the tube, remembering to vent the tube, vomiting, extra laundry and baths because of vomit, towels laying around to catch the vomit, playing the ultimate feeding schedule dance because some meds are to be given an hour before eating and eating takes an hour and she shouldn't be moved for an hour and she shouldn't eat right away after awakening (did I mention she might vomit it anyway), smelling random vomit smells and trying to figure out where it is coming from, cleaning her button, trying to pick the right clothes that make it easier to feed, spending 20 minutes urging her to eat with Sponge Bob as a reward for each bite, okay I think you get the point on this one Instead, it would be worries about whether I was feeding my kid a balanced meal, worries about giving her too much sugar, making smiley face pancakes in the morning, extra baths, not to clean up vomit, but instead to clean up evidence of fun (or naughty, though fun) exploration, vomit when sick, tantrums because they don't want to eat their vegetables or random food of the day they don't like, cleaning up food thrown or smeared around, cooking with or teaching basic cooking/baking skills like stirring the batter. It wouldn't be near daily appointments with providers. Speech, OT/feeding, PT, Neurology, Feeding Specialist, Physiatry, Orthopedics, GI, Complex Care, Surgeons, dieticians, social workers, geneticists, PCP, dentist, eye doctor, finding the right provider in each specialty that is knowledgeable, willing to learn, and invested in working with our child in the long term and isn't wasting our time by just doing their job rather than being passionate about their job, spending time on the phone dealing with insurance company about stupid things like denying the wheels on the wheelchair!, calling offices because they didn't even submit to insurance and now I'm getting a $2000 bill, calling offices that I've already talked to after getting a message 2 days later implying we never talked, talking to offices about the next plan of attack because options A and B aren't working, talking to schedulers who called me to schedule and when I call back, they asked what I am calling to schedule as if they have no freaking clue, when they were the ones to call me, educating our providers on our daughter's illness because they've never heard of it, coordinating our daughter's care because let's be honest, who else is going to do that, being prepared at every visit to make sure all questions are answered and they understand what you are actually asking not what they think you are asking, refilling and picking up medicines before you run out, calling back pharmacist who has questions, trying to fit all appointments in and around aforementioned feeding/med schedule and other appts, well check appts that our daughter is way far behind meeting the exciting milestones and instead we are being praised for doing the necessary for taking care of our daughter's special needs and so on. Instead, it would be well checks celebrating the next milestone and discussing what to look for next, discussing what dangerous or risky things to avoid next with the doc, maybe only going to the doc a couple times a year for well checks/sickness and possibly still dealing with annoying scheduling/billing issues during those few visits, it would be daily/weekly play dates with friends instead of therapists or outings to do fun activities to burn off some energy. It wouldn't be spending the days without appts doing feeding exercises, PT or OT exercises, speech exercises, playing with the same toys, the only ones that she seems interested in, having guilt about pushing her too much or not doing enough, tears and tears because she hates tummy time or being on her hands and arms because it probably hurts, having a messy house because of adaptive equipment and no time because of appts taking over life, lots of time in front of the TV, Sponge Bob to be exact, because she is limited in what she can do and it's always been the one and for a long time the only thing that would calm her or bring a smile so genuine and big that how can you not keep letting her watch it. Instead, it would be spending days playing with the same toy over and over again because she LOVES it, having guilt because maybe she is spending too much time in front of screens, chasing her around, consoling her when she wants to go out and play but can't because of the weather, tears and tears because she fell while playing, having a messy house because of having an active toddler who is into everything and no time because of having to constantly be chasing toddler around, yelling at her or repeating yourself because she isn't listening. It wouldn't be silence or babbles, hoping for sitting up, wondering if she'll ever crawl, walk, dance, talk, hug, say I love you, tell us she's hurting, tell us what she doesn't want. Instead it would be I love yous, running, falling, dancing, hugging, talking too much, easy laughter, funny things kid say, tears and words when hurting. It wouldn't be all night parties (not sleeping for hours and hours), seizures or worries that every single movement or jerk is a seizure, finding a clock to make sure to be able to time the seizure and having the rescue med around in case this is the time I will need to use it, terrifying screams after seizures, tears and tears after a seizure from both her and me, worries about SUDEP (sudden death of epilepsy), worries about being on too many medicines and what the future consequences will be, worries about logging the seizures, worries about how the seizures will impact her development, worries about whether the seizure will ever stop, sleeping with her because of fears to leave her sleep alone, wondering if she'll ever get seizure control, deciding when to do make a wish, because she qualifies, but you want her to be old enough to enjoy it, but also to be around to enjoy it. Instead it would be....I don't know if there is something in typical parenting comparable. It wouldn't be worrying about whether she'll have friends because people are afraid of her or her wheelchair. Instead, it would be worrying about whether she'll make friends and if they'll be good to her. It wouldn't be worrying about whether she'll ever be able to get married and have kids, go to homecoming with a date, live on her own, play a sport. Instead it would be worrying about broken hearts, divorce, the future success of your child, being the best kid on the team. It wouldn't be jealousy, loneliness, grief, sadness, anxiety, anger about the things I've mentioned. Instead, it would be jealousy, loneliness, sadness, anxiety and anger about other parenting things that I don't know much about. I could go on and on. The reality is I'm not a typical parent and I can only guess what it would be like based on what I see in the world around me. Life is HARD no matter what the circumstance and though sometimes I get caught up in the unfairness of life as it is for Maddie and our family, LIFE IS UNFAIR, period. The grass is always greener. People always want what they don't have. AND people always take the things they do have for granted. One thing I know for sure that if life were different, I wouldn't be who I am today. I wouldn't be stronger and better having experienced Madelyn's love and joy for life, resilience and strength despite her challenges. I wouldn't have experienced the true joy of seeing her sit up on her own for the first time when we were told she may never do that. I would have expected it and not cherished it. I would be lying if I said that I wouldn't take her disorder away if I could . It has stolen too much from us. But I am grateful for the life that I am blessed with and the lessons that come with it. I am blessed for having Maddie. I have learned to appreciate the little and important things. I have learned to not get bogged down by little things that don't matter at the end of the day. I have learned that everyone is different and so are their experiences and you never know what someone is going through. I am a better therapist because of the things I have been through. Madelyn inspires me. People who have struggled inspire me. If life were different, I don't know who I would be or what would inspire me. While life as it is is beyond stressful, I do my best to keep my eye on the bigger picture: finding balance, joy, inspiration, faith and love and most of all providing these things for Madelyn, with or without her disorder. I went to church this morning, just like any other Sunday. One of the regular elements of the service is to spend a few minutes greeting others at the service. Though I have been going to this church for several years now, I don't really know many people, and this part of the service always makes me slightly uncomfortable. I blame it on being an introvert. I greet a few people near me and since I know I still have a couple minutes before they'll resume the service, I walk down the aisle towards a family across the way. It's an older couple, who really isn't talking to anyone. In fact, my initial reaction is that they're surprised I'm greeting them. I say "good morning", first to the man then to the woman. I notice the woman looks sad. As I shake her hand, she quickly says, "Can you do me a favor?" I'm a bit caught off guard, but I say "sure". She continues, "Will you say hello to her?" and looks towards the girl sitting down next to her looking down. I quickly realize that there is another person in the aisle and that she is a young adult with special needs. I didn't even notice her sitting there! I walk towards her and say hello. The man tells me that she is cranky today. I tell her it is nice to see her and the woman (who I presume is her mom) tells me her name. She continues on to tell me that people ignore her and never say hello. I look at the mom, tell her I'm sorry to hear that, and go on to tell her that my daughter has special needs too She responds with a head nod and a "so you get it." I nod and return to my seat.
I'm shaken. I'm at church, just like any other Sunday, but this Sunday is different. The music starts and I begin to sing along, only this time, my mind is elsewhere. Here we are at church, where people go to feel welcomed and loved, and this woman has to ask me to say hello to her child with a disability. She has to ask ME, a person with a child with a disability, to say hi to someone with a disability. I'd like to believe that I would have said hi, had I seen her sitting there, even without the request. But the truth is, I have no idea what I would have done. This makes me feel even worse. The emotions are building up inside of me. I think to myself, no wonder they look cranky. No wonder they appeared surprised. I realize at this point I'm making assumptions, but I can't help. I feel like I have a crystal ball into my future. A future where I will have to ask people to say hello to my daughter. I consider what it will be like to have to take care of my daughter beyond what's "normal." And I wonder what she'll be like, how I'll manage, will she have to be in a group home, will she stay with us, etc. While I do "get it" as the woman implied, I also don't. My daughter is little and cute. Most people don't know that she has a disability because for the most part right now it is invisible. And because of that, we haven't had to deal with any rudeness or discrimination, yet. I say yet, because I know that the time will come. The time will come when I have to decide whether to ignore, educate, respond in anger/sadness or make a request like this woman did. In fact, that time might come sooner than later, since we'll be getting a wheelchair which is like a big, huge sign that says, look at me, I have a disability. I'm not looking forward to that. However, little does the lady at church know, she inspired me. Man, do I have respect for her. She just put it out there and did what she felt was best for her child, no matter how old. She put aside whatever fear of judgement she may have had and did it. I have no idea how she felt afterwards, but I hope something of our interaction made her feel better. The truth is, I'm afraid. I make every attempt to avoid comments. Not because I'm embarrassed, no. But because I'm afraid my heart couldn't handle it. I recently found myself with Madelyn in a restaurant hooking her up to her feeding tube and trying to be discrete about it. WHY?! Why should I feel like I have to spare other people the discomfort of my daughter having to eat through a tube! She's eating too, it just goes in a different way than the rest of us. I know what kinds of opinions are out there on the matter. (And if you don't know, they include things like, "we don't want to see that".) And let me tell you my opinion. I'm not sorry if it makes you uncomfortable. Because you know what? She is beyond uncomfortable and she's not complaining about it, now is she? So grow up. Okay, now that I've practiced what I might say....if you know me, you know that I'm not confrontational at all and would not say this to anyone....unless they made me mad. Back to my point. I'm nervous about what others will say and since I'm new to this whole thing, it seems easier to try and prevent comments. But is that fair? Maybe what Maddie needs is for me to step up and say what needs to be said. After all, she is watching and learning from all I say and do. Sometimes, it is easier for me to tell people she has a disability up front to lay the ground work. But that has its consequences too. Talk about a conversation killer. I've even made our neighbor put their house up for sale because I laid it out there. Okay not really, but I did have a pretty awkward conversation with the neighbor, that I never really talked to, prior to their house going up for sale. It seems that no matter how I play the cards, people will have whatever response they were going to have anyway. They have their judgments. Even people at church. Each morning I pray for the strength to get through the day. I pray for God to use me to spread love and to work through me. Today, I felt like he was speaking through this family to me and I hope tomorrow, he will use me to speak to someone else. It was hard for me to focus on the rest of the service. A song came on. As I mindlessly sang along, I held back tears thinking of this family's experience, knowing that it happens day in and day out to person after person based on race, religion, ability, gender,etc. And even worse, that it might happen to me. Then, I HEARD the lyrics. "And I could hold on I could hold on to who I am and never let You Change me from the inside And I could be safe I could be safe here in Your arms and never leave home Never let these walls down But You have called me higher You have called me deeper And I'll go where You will lead me Lord You have called me higher You have called me deeper And I'll go where You lead me Lord Where You lead me" -All Sons and Daughters I could be safe. Yes, I could stay in the safety of avoidance. But I have been called higher and deeper and Maddie needs me. And so does the rest of the disabled community. They need US. I hope that when you encounter families with different challenges, that you will show and spread love and respect. That you will teach your kids to show love and respect. That you will acknowledge and get to know those of different abilities. Because people of ALL abilities have feelings too. Because it down right HURTS when you don't. If you have questions on how to do that, just ask. My alarm goes off at 6am. Snooze... 6:15am...snooze...6:30, repeat the cycle till 7. I'm supposed to at least roll over and grab a med to give to Madelyn an hour before she is supposed to eat. She needs to eat by 7:30. To be honest, we haven't quite figured out the schedule that will allow us to get out of the house on time to get Madelyn to school and factor in time to clean up vomit that will likely occur after she eats. I roll over and it's 7. I decide there isn't enough time now because I managed to snooze 4 times without really realizing it. Each morning I play a game: when is the last possible time I can get up to give her meds? Sometimes I win! She gets the med. More often than not, I lose. She doesn't get the med, I end up feeling guilty and I really don't get good sleep (something I really need). For the record, this med is only to reduce drooling which is caused by another med. Certainly not a med that will cause problems if she misses it, other than clothes that are more wet than usual. As I roll out of bed, I look back and Madelyn is peacefully sleeping in the bed sucking on her thumb. Since it is already 7 and she has school today, I turn on the light and begin to try to wake her. She's not a morning person. Just like her momma. Unless I turn on the TV and put Sponge Bob on, she's not waking up. I change her diaper while she sleeps and I pick her up and carry her downstairs. And I sit in the chair and snuggle with her. I know I don't have time to snuggle, but when she is sleeping and tired, she is so cuddly and I cherish her cuddles. So we cuddle until she gets uncomfortable and the daily schedule begins.
I set her in her chair, turn on the TV, hook up her feeding tube and give her her meds and feed her. At this point she is awake and quietly sucking on her thumb and holding a blankey while watching TV. She is so calm. I go and get ready, but as I step away, I get nervous that today will be the day she vomits while I'm in the shower. I hope I hear her cries if she does. I try and relax and enjoy my shower. The truth is, there isn't much relaxing in the life of a parent of a child with special needs. Nonetheless, I know the importance of self care and try anyway. I get out of the shower and check on her. Phew, she's not vomitted! AND she hasn't yet somehow opened the port letting all the formula spill into her chair. Maybe this will be a successful feed. I continue to get ready and then move to getting her ready. The challenge is I can't get her ready until she's finished eating. I've tried getting her dressed before and I had to change her anyway because she threw up all over her school outfit. So, her pump tells me she's done eating. I carefully flush her tube praying that she'll keep her food down. So far so good. I wait a few minutes and notice it's getting late. I get her out of her chair. Oh no. Here it comes. We have a towel near by to catch the pool of vomit. And so that's what I do. So frustrating! Another meal down the drain. We get cleaned up, dressed, put a quick pony in her crazy hair, and head to school. Today, I get to take Maddie to school because I'm off. Maddie is happy to see the other kids at school and I am happy to see her so content by little things. She plays with toys while the other kids move around her. Maddie can't walk, but the rest of her class can. I try not to notice all the things that the other kids are doing that Maddie can't and try to pay more attention to her sweet spirit that has tried so hard to be able to do the things she can! It truly is a blessing that she is smiling, giggling, sitting up, reaching for things, etc. I feel guilty for being sad about the things she can't do. I struggle to say goodbye, but know that I need to leave her and let her explore the world with her classmates. I look forward to picking her up and taking her apple picking later today. Even though she can't physically pick the apples, I want her to do something fun. It is hard when you have a kiddo that has limitations on what she is able to do. I want to do fun things with her but what fun things do we do? So, we do the best we can. Mostly, Maddie loves to be out of the house and is such a curious little one that she enjoys looking around wherever she is. So we'll go apple picking. After getting some things done around the house, I return to school to pick her up. I walk in and she is covered in yogurt! While her classmates are eating their snack, Maddie gets to explore with the food and see if she likes it. She looks like she's enjoying herself and when she sees me, she looks proud of what she's doing. And I'm proud of her. I learn that she played outside with her friends and loves "circle time" which involves sitting in a circle with her friends while listening to a story, two of her favorite things. School is so good for her. We go home, nap and we're off to pick apples on this beautiful fall day. Actually, it feels nothing like fall. It's 90 degrees and we quickly learn, it feels every bit of it, especially in the sun. Maddie is bright red. She doesn't tolerate the heat well. I worry that she'll get dehydrated because I remember, she threw up earlier today. I try to enjoy the apple picking and not let my worries take over. We set Maddie down in the shade under an apple tree, which helps our arms since she is almost 30 lbs now. And she seems to really enjoy looking around. Brian suggests I take a bite of an apple to see if she'll taste the juices from it. She only eats but a few bites of baby food orally, but is making great progress at this time. We put the apple in front of her and she opens! Not only does she open but she puts her teeth on the apple and we hear a scrape. She's trying to take a bite! WHAT!? Is she really trying to eat an apple?! Wait, she opens again and appears to want more. She not only is trying, but she likes it! We're thrilled. This is a huge victory. No really. It may seem like not such a big deal. Most things probably do. But when it comes to Maddie and her disorder, these little victories, milestones are HUGE! Okay, so apple picking was short because it was so hot. But not only did we get some great pics, Maddie tried to eat an apple.! Ah-ma-zing. On the way home, I see I have a missed call and a voicemail. After checking it, I am even more thrilled. It's a call from our DME, letting us know that our request for a bath chair and wheelchair has FINALLY been approved by insurance. Almost 5 months later (the whole process was supposed to take 3 months), we have APPROVAL. Now, 2-4 more weeks and Maddie will have a wheelchair! And a bath chair. Maybe Maddie can actually enjoy bath time now. Wow, this is such a relief. After lots of hang ups, including our primary insurance denying the WHEELS, (oh wait, did I make a typo? NO. Actually I did NOT. You read correctly. The wheels on the wheel chair were denied by insurance. HAHAHA) we are excited for Maddie to be getting more supportive seating. It is now a day later. And to spare you all from having to read a long novel (as if this isn't already a novel), Maddie sat herself up, all on her OWN! Wooooohooo! Two HUGE victories in 2 days. Is this real life? Not only did she sit up once, she sat up not twice, not even 3 times, but 5 times!!!! (and we even caught it on video). I still can't believe it. My heart is so happy. Maddie loves being upright and she has been trying and trying to get herself up. When you see your kid struggling to do something that you know is really, really hard for her but that she seems to want so bad, you teach her, encourage her and challenge her over and over and over again, because time and time again she has proven she can. And you have hope she WILL. You see, Maddie may have CDKL5, a disorder which in my opinion is a thief, but she doesn't know that. She doesn't know how rare she is. How unlikely it is for her to do things that most can do with ease. In fact, she seems so content in life. Content to just BE. To be around others. She smiles with ease and her smile is contagious. She is truly happy, despite what CDKL5 has stolen from her. And, she is so strong. She is determined to do something and she keeps trying. No matter how hard it is. No matter if it causes her pain and discomfort. She fights. She is so resilient. So resilient that even when she has a seizure, she'll wake up the morning after, go about her day, and sit her little self up! How about that. How can you not be inspired. You see, as a parent of a child with special needs, there isn't much relaxing. In fact, there is quite the opposite. There are a lot of long, hard days. Days full of worries, sadness, grief, loneliness. Days with seizures and vomiting. Everything is a fight. It's a world where little victories are rare and deserve major celebrations when they do occur. And where these little victories get me through until the next little victory. Where Maddie inspires me to be better and stronger than I ever thought I could. And so when life finally gives me 3 really exciting things in 2 days, my heart smiles. My heart is full of happiness because Maddie is mine. So rare and unique and so special. In a world where there isn't much relaxing, she makes up for that with her strength, with one little smile, one sweet look, one sweet sleepy cuddle. She is the apple of my eye. |
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
|