Tove Maren Stakkestad

@tove-maren-stakkestad | contributor
As a mother of four boys, I report live from the trenches of motherhood. I am a Danish American writer with a unique, fun and relatable voice in the parenting community. After spending over 20 years in the financial services industry, I followed my true calling and started writing full time. Now I successfully help parents everywhere to parent with heart and humor. I have Narcolepsy and one of our children is medically complex. The past 10 years I have helped fellow medical moms adjust to their "new normal."

This Is Why I Refuse to Hide My Thyroid Cancer Battle Wounds

I was still in an anesthesia-induced haze when I took pictures of the latest addition to my collection of surgical scars. The skin on my neck was raw, red and sensitive, much like my emotions. Going through a three-hour surgery, under general anesthesia is never going to be “routine,” even if it is the surgeon’s 3,126th time performing this exact procedure. When I took the selfie, it was meant as a way to document my journey. I looked at the scar with pride, relief and a healthy dose of self-love. I knew from experience that, like my emotions, the tenderness and rawness would calm down — even become unnoticeable over time. My phone was flashing non-stop with notifications from friends checking in on me. I replied to a few of my closets friends with the scar-selfie. The encouraging replies pouring in as fast as I sent the picture. “Wow, you look great!” “Amazing!” “You are a rock star!” I felt great, until… one reply hit my inbox and stopped me dead in my tracks. “OMG! It looks like you were in a sword fight with ninjas… and you lost! I hope you plan on keeping it covered. You wouldn’t want to scare people!” Wait… what? Normally, I would take a message like that with a grain of salt if it came from one of my friends with a good sense of humor. However, this was a serious message — with a serious affect on me. Not only did this scar cost me several thousands of dollars, countless hours of research, doctors appointments and worrying, but it also saved my life and will help me feel better in the long run. These are all good reasons to wear it with pride, even flat-out flaunt it for the world to see. However, the most important reason for me not to hide my scar is the message I am sending my kids, one of which has several serious medical conditions! Scars are badges of strength, resilience and bad-assedness! Scars are nothing to be ashamed of! Several years ago, our son who was very sick as an infant, came home from school in tears. The kids in his class noticed the scar he has at the nape of his neck. They thought the scar looked weird and they wanted to know what had happened. Unfortunately the way they asked wasn’t kind. I sat him down, explained in great detail how he got the scar and how it was a sign of his strength to pull through being critically ill as an infant. He proudly went back to school and told his friends the story behind the scar and they immediately turned their ridicule into admiration. What message would I be sending my son if I covered my scar, if I complained about its appearance and expressed a desire to wish it away? I would clearly be telling him that my words to him meant nothing and that scars should be hidden and they are embarrassing. The badass message I had tried to convey to him earlier would make me look like a coward and a liar. For the sake of my son, his numerous heart friends who belong to the “zipper club” (a vertical chest scar after open heart surgery) and everyone out there fighting a brave fight every single day… I will proudly wear my scar, show it off and answer any questions people have. So far, my scar has helped spread awareness of thyroid disease and thyroid cancer, as several people have asked me in a polite and inquisitive manner, “What happened?” without making me feel like I lost a ninja sword fight. My scar reminds me daily of my strength and resilience. My scar shows my kids that sometimes we are thrown curveballs, but they are all part of our journey, and fighting through each and every little battle is worth all of the tomorrows we gain. Please remember this message, next time you stand in front of the mirror and look at your scars, stretch marks and other evidence of winning life’s battles. The words you mumble to yourself may be easily heard by the little ears around your home. The way you hide and conceal your scars can send a more powerful message than the words of encouragement you tell your children. I encourage you to wear your badges of courage and resilience to celebrate your wins and gain strength from your adversities. Show the world that only true bad asses are proud of losing ninja sword fights.

How Narcolepsy Has Made Me A Better Parent

Parents are always tired, right? We are constantly walking around on the brink of sleep deprivation, especially when babies are young. If there is something mothers can bond over, it is their constant lack of sleep and wondering when their babies will finally sleep through the night. So much about parenting, motherhood and raising kids revolves around sleep or the lack thereof. Parents live for and dream of sleep. Imagine constantly feeling like you have gone without sleep for 48 hours. Your body aches in a futile attempt to get you to slow down. Your brain is in a chronic fog, and it’s hard to complete thoughts, much less sentences when you speak. Your mind seems to be operating in slow motion. The restful sleep you so long for eludes you. Once you lay your head on the pillow, your mind starts to race, or sound bites from earlier in the day play in a constant loop. It can be a song lyric, a technical term, fancy words or simply someone’s name playing on repeat. Finally, you fall asleep, but now the dreams… or are you still awake? The line between asleep and awake is blurred – and very subjective. There is no such thing as “sweet dreams” in your vocabulary. There are hallucinations and nightmares, on a good night. That’s a brief description of what it feels like to have narcolepsy. Parenting with a chronic condition is no easy task. As a parent with narcolepsy, I am constantly balancing taking care of myself and caring for others, and rarely have enough energy and time to do both. Most days, running out of “spoons” is unavoidable. Other times, I may have a streak of several good hours or days, maybe even decent weeks. But even with all that said, I will go out on a limb and claim that narcolepsy has made me a better parent than I might be otherwise. Being raised by a parent with narcolepsy is teaching our four boys a number of things they otherwise wouldn’t understand, and for that I am thankful. Yes, I said it – I am thankful for my narcolepsy. Here are four reasons why I feel it makes me a better parent: 1. We don’t over-schedule our kids. Y es, it would be a logistical nightmare to balance four boys with 2 or 3 extra curricular activities. The mere thought of it makes me yawn. We try to have no more than one or two things on the schedule on any given day. Slowing down and spending more time at home than most families has created a bond between the boys like no other. They also know how to play with their toys and entertain themselves. 2. Our kids show empathy every day. The boys know I have narcolepsy with cataplexy and they understand what that means in my particular case. For example, there is something oh so tiring about reading to the kids. Some days I just doze off for a few seconds; other days I take a quick power nap. When I wake up, I know I will have a pillow shoved under my head and a blanket draped over me – and a little boy patiently holding his book, waiting for me so we can continue reading. 3. The boys are learning responsibility. There are days where I have enough energy to do homework, cook dinner and clean up afterward, but on other days I need an extra hand with setting the table or doing the dishes. The kids know to offer their help without me having to chase them down. They understand that they can’t always tell by looking at me if I am having a good day or a sleepy day. 4. We are raising four resilient boys. The kids know what to do in case I experience cataplexy while we are out in public. They know how to reach my husband on my cell phone and who they should ask for help. Our instructions to them are simple: “Keep your brothers close and safe. Direct first responders to look at my medical alert bracelet. Call Dada.” Practicing the drill, explaining cataplexy and teaching them how to react was one of the hardest things I have had to do due to my narcolepsy. But we couldn’t afford to sugar-coat things or have them not understand exactly what was happening. They take great pride in always making sure I am doing well. They know that we as parents will always care for and protect them. But they have also learned we are only human – and in a family, we all have to protect and care for each other. I am the first to admit that parenting with narcolepsy has its challenges. But with lots of love, empathy, patience and a good healthy sense of humor it is possible to find the good in narcolepsy. My recipe for successful parenting with narcolepsy is to take life one nap at a time.

What I'd Like to Say to the Staff Treating My Medically-Complex Child

To the staff overseeing my medically-complex child, My child has been in this world much longer than you expected, thus I’ve been in this relationship with you much longer than I expected. If I could break up with you and find someone new, believe me I would (I’m sure you would too on some days). But that isn’t possible; we’re in a dysfunctional relationship. If we recognize this together and just come to an agreement in this open forum on a few things, maybe we can better understand and appreciate and trust each other again. First though, I want to thank you for being in your chosen profession and trying to help people like us explore this uncharted life. Even though I’m angry, distrustful and frustrated, I appreciate you, and I’m glad you’re in our lives. So… here are my thoughts on how we can agree to be in a healthier relationship: 1. I know my child best, so please listen to me. I will not ask you to do unnecessary things that have a million-dollar price tag or contravene your ethics. My requests are always reasoned and well-grounded in research. Challenge me, absolutely, but don’t dismiss me. 2. Don’t act surprised by the summary (written or verbal) I’m able to provide you on my child’s history and conditions, even in the most stressful of situations. Your surprise is insulting. I, like many parents in my shoes, have taken the time to learn the language you speak, read the same articles you read, ask many professionals and other parents for their experience, interpretation, etc. So please don’t treat me like I’m some lay-person new to this environment. And even if I was, don’t insult the capacity of a mama bear to understand a completely foreign subject when her child’s life is at stake. 3. My child (and by de facto, me and my partner) are the President, chairman, decision-maker. You’re the analyst. Come prepared to our appointments, give us information and make a recommendation.  Be prepared to be challenged; we will challenge you. Yes, you’re the expert in your field, however, we’re the expert in our child. If you haven’t read his 11-volume file, don’t try to tell me about my child. You will get something wrong. That’s the root our relationship problem: distrust. When we challenge, don’t get annoyed, don’t get insulted. Inform us, educate us, and do so in a respectful manner. Our challenges aren’t meant to be disrespectful; they’re meant to ensure our child survives whatever it is you’re proposing. 4. Advocate with us. Don’t resist change to how you’re expected to treat patients, in particular my child.  Note: Change is hard, I get it, but really you’re in a business of constant change. Don’t treat my child as if you’ve seen him before (once when you were in medical school 15 years ago, you may have seen something similar). Don’t treat my child as if you know for certain what will happen. You don’t. You’re not a psychic. 5. Just because we know (and live) with the reality that our child doesn’t have a long life expectancy, and we know you can’t “fix” him, doesn’t make it OK for you to dismiss us time and again and/or not offer the best possible coordinated efforts/information to help manage his health for the longest time possible. By not treating us as if he’ll be here forever is assuring his rapid demise. For example, telling us, “Oh, we knew he had ‘this’ but didn’t know what it meant” after I sought the consult of the leading experts in his condition who then told you what ‘it’ meant, sounds like this to me: We didn’t care enough about your child because he’s already outlived his life expectancy, and we know he’s going to die anyways, so we didn’t see the need to seek out the experts in the field to give us as much information as we could ever possibly need to help you make informed choices and offer you the best options for treatment. 6. Stress is our norm. It’s where I live every day. I haven’t slept properly since my child entered this world seven years ago. I constantly wonder if he’ll live another day. Or did I do enough to make his life great today? I have off moments when I’m a parent to a “normal” kid and yell at him for some normal childhood behavior and forget to apologize before tucking him, and I wake at 3 a.m. to realize maybe he isn’t breathing and the fear grips my chest. All that said, I own these thoughts and emotions; I don’t need you to hand-hold me. You’re his professional team, not my caretaker. I have my own support network. Also, don’t sugarcoat things, don’t talk to me like I need your sympathy, and most of all, don’t withhold information so I’m blindsided two months later when all of a sudden he needs a procedure for something I never knew he had. 7. My two least favorite phrases from the past seven years that I hear more often than I should from you: What did you do to your baby/This was caused by something you did in-utero.* You are not like other parents.** Not sure which one is worse, but let’s just stop saying either of them. *for the record, I didn’t do anything to my baby; it appears that a genetic mutation occurred in my child. Guess what? That sh*t happens. All the time. **Please stop comparing parents. We’re all different and have different stories. Get to know us, and realign your practice to the needs of the patient and the family. See No. 4: Change is hard, but you can do it! You’re our analysts, our advocates, our experts, in a world we’re exploring for the first time. Let’s chart this path together with the common goal of seeing my child be successful and have the best life possible. This article was written as a guest post for Mama in the Now by a Canadian heart mom, L. Mama in the Now is a parenting blog that empowers mothers to parent by intuition and with confidence. Tove Maren is proud to help other heart moms have a voice and an outlet for their concerns through Mama in the Now. This piece was so powerful though, that Mama in the Now shared it exclusively with The Mighty. Two bull horns are always better than one! Thank you heart mom L for sharing from the heart. Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

To the Mom Sitting Across From Me With a Child With a Heart Condition

Dear mom sitting across from me, I know we have not officially met before, but I can comfortably say that I know you already rather well. Our paths might never cross outside of these walls. We live different lives, even speak different languages – but in here, none of that matters. In here, we speak the same language and have the same objectives. To us “ejection fraction, EKG, echo, cath, pressures, left ventricle, ace inhibitor and beta blockers” are just some of our shared everyday words. We can carry on hour-long conversations about these terms, using them like professionals. We may not fully understand what they mean, but we know what they mean to us – we know how they affect our world. We hope to leave here today hearing “unchanged” or even “normal range” and “improved” – we are both hoping for the same results and answers. Our paths have crossed today and for a moment in time our lives are interchangeable – almost identical. You barely looked up when I sat down, your surroundings don’t matter right now – all that matters is your companion – your child – he is your world. I sit back, turn my focus to my companion, my child – because he is my world. Together, the two of us, two worried moms, sit… holding our babies, clinging on to hope, miracles and prayer. The room is gray, drab and sterile. This is not a place where you would expect to find spirituality, yet the presence of a Higher Power can be felt as soon as you enter the room. God, Jehovah, Allah – whatever you call him – his presence can be felt in every corner, on every cold metal chair, all over the room. Everyone in here is calling upon their Higher Power and the requests are all the same – even though the languages vary and the names are different – the message does not change: “Please be by our side, and let us hear good news.” No one in this room wants to go this journey alone, but with their Higher Power at their side, they feel strength and courage. Mom, I see your tired eyes. I know that sleep eluded you last night and perhaps even the night before. You look worn out, scared, sad and deflated – but when your eyes turn to the bundle in your arms there is a glimmer of hope. I watch you looking down upon your baby, and I know your thoughts turn to his future, wondering what it holds. You quickly rein in your thoughts, look up and give me a cautious smile. I can tell that you made an extra effort to look nice today. Your clothes, hair and makeup were all chosen with this potentially life-altering day in mind. You are wearing some makeup, but not too much – in case there is a reason to cry uncontrollably. Your clothes match perfectly and look nice, yet they are comfortable – in case you will need to stay here for some time – days, perhaps even weeks. Your hair is nicely styled – yet it looks casual enough to be able to last a few days. Your purse is really big. I bet that this is not your everyday purse. This is your “what if” or “just in case” bag. This is the one you have had packed like this for a while. Inside is an extra cellphone charger, a change of clothes for you and your child and some cash. On the bottom in a corner is your old hair brush and the tooth brush your dentist gave you after your last dental exam. This is the bag that normally sits by your front door – ready to go into action if ever called upon. This is your “worst case scenario” bag. But if it is never used, if your baby outgrows the spare clothes before ever wearing it – then you are blessed – that will mean that “unchanged” and maybe even “normal range” and “improved” are part of your vocabulary now too. Dear mom sitting across from me. I will add you in my prayer, if you will add me in yours. Together we will sit here in silence and pray our children healthy. We may only share shy and cautious smiles on the outside, but on the inside – in our hearts, we share this journey. I wish you nothing but “unchanged” and even “normal range” and “improved” – at this visit and all the others that are in your future. Thank you for making me feel less alone today – thank you for sharing your story just by smiling to me. Sincerely, Mom sitting across from you This post originally appeared on Mama in the Now. The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.