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.
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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
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