12 Things Moms of Medically Complex Kids Need You to Know

4 Years feels like a whole other life ago. That's because for me is it. My name is still Kelly, I have been a mom, but for almost 4 years now my title has drastically changed. While the official M.D., APRN, LCSW, RN, LST, OT, PT doesn't follow my name, I have learned some critical parts of their jobs. Regardless of how many times I change a trach, flush a g-tube, utilize an Ambu bag and a oxygen tank, I am still mom and sometimes, like our favorite pediatrician says, " Just be mom ". Unless you  have been there, you probably can't imagine how how hard that is to do at times. Then there are times all you want to be is mom, the "normal" mom. The one that doesn't have to check the portable suction machine before heading to the grocery store or double check you packed more lube in the trach bag, or go to work and not have a nurse call you with an update on your kid.
We would never expect anyone to magically know what this life is like for us. How it changes us inside and out.
                                         


What You Don't Know About This Life

  1. We become a walking rolodex of doctors, specialist, clinics in multiple Children's hospitals. We know you are very capable of finding a doctor for your child's medical issue, just don't take offense if we ask is Dr Smith, is it Dr. John, or Dr. Jane or is that new fellow? We tend to have met so many doctors over the years we could run a referral line.                                          
  2.  Our backs do hurt but we won't tell you because then you will think we can't handle this life. Often our backs hurt from sleeping upright in the ICU even after the nurses insist we get some rest. Other times it's from lugging around overly heavy medical equipment like o2 tanks and ventilators, and a portable version of every pump, monitor, medical machine out there. Just incase.                                                                           
  3. The census is in and we ask that metal ICU code cart wheels be frequently oiled. Having spoke of the haunting sound of the cart we all agree the PTSD sucks. Also the squeaking of your sneakers while saving lives is a sound we don't sit well with. I can't watch basketball games, and I refused to wear a pair of sneakers that kept squeaking because all it sounds to me like is a trauma. Which brings me to my next bit of insider info....         
  4. PTSD effects parents of medical complex children. We want you to know what that means. It is different while the same for us all. I freeze up and can't breathe when I see a certain shade of purple since I did CPR on Mason. His lips were a whole other level of discoloration than any other life threatening moment. Two very distinctly dark purple spots of his lips. Many of us have laid beside our child sobbing because we know what is happening in the room beside us...and we see you lose your child and we lay there sobbing for you and terrified we will be next. We hear the screams. The traumatic events play out like movies in our heads at any given time. When our child is heavily sedated for surgery or for their body to have a break, the image of how they looked one of the times their heart stopped flashes back and we have to remember they are OK. Trips to the ER for minor things for our other kids make our skin crawl. Especially when its packed and the trauma room, that you are all too familiar with is the only room available. When we are home and our child is still in the hospital we swear we hear feeding pumps, and pulse ox alarms and ventilators. We jump when the Instant Pot beeps.                                                                                                                                                                
  5. We are very hypervigilant. We are prepared for anything at any moment. We might go into storm prepared mode a bit more overboard than you because a power outage or emergency evacuation isn't so simple. When it snows, yes we are freaking out if our road isn't plowed because we are thinking worst case scenarios even if our childs been stable for months. We heavily salt our walk way because we don't want the rescue crews to slip and fall while saving our child's life. Refer back to the PTSD.                                                               
  6. Please don't ask us how we do it. Frankly, we don't know. We don't know how we get up and do whatever exhausting task is set before us. We don't know how we make the choices we have to make. We don't know how we survive in a waiting room for over 13 hours while our little one is in the OR. We don't know how we stay up all night and all day when homecare nurses can't do it, or call out last minute. The only reason we can think of is love.                                                                                     
                                        Photo by Zhen Hu on Unsplash                                                                                        
  7. We are jealous of your kid especially when you complain that they won't go to bed as told or talk too much. Some parents will never hear their child cry or talk. Maybe that is the worst thing for you at the moment so its okay complain, but be prepared to strike a nerve in a parent.                                          
  8.  We are grieving. Grief is not designated solely to death. Grief is loss. We have lost things we never had, we have lost things we had and were torn from us. Not all medically complex kids were born with medical issues. Some parents got several years of a good life then suddenly their child endures and illness or injury and the life they once lived is gone. I am grieving. We are. We have been grieving since the day after Mason came into this world. Now my son is very far away without us by his side and we have no idea if we will ever see him walk or sit  again, or smile again, or hear his first words, or even a simple wave.                                                                                                                                                       Photo by Hailey Kean on Unsplash                                                                                              
  9. We know we need to practice self care. We know. What you don't know is how hard that can be day to day. One day we might indulge in a piece of cake and binge watch our favorite show that makes us feel good. The next several days all we want is our child better or to be by our childs side and when we can't we want nothing else. Nothing can fill that is missing at that moment. We appreciate the bottle of water, the chocolate, the gift certificate to get our nails done, but really we know it won't stop the pain.                                                     
  10. Our children are our children. We are everything to them. We memorize almost 40 doctors and specialists names, we know how to get through to any DME and get what our child needs, we can walk through multiple hospitals blindfolded if we had to. In the life we live each day we want you to remember that we are more than our childs mom. We are individuals who might not be able to socialize as much or in the same fashion all the time, or work a career like you, but we are still us. We make things work. We push through each day, we push our businesses on you because we are desperate and nervous, we cry from loneliness, we wish we were out to dinner and drinks with you, we hate the grocery store more than you because aside from appointments that's all we go to. But we are still here.     
                                         Photo by Kristina Tripkovic on Unsplash                                                           
  11. Some doctors and nurses become heroes to us. Even when they are so humble and don't want the praise, trust us, we would scream it from the roof tops of hospitals and offices if we could! When we see those heroes down the road during a sudden set back don't be surprised to know we are hurting for you. We know you have spent countless days and nights thinking of our child, sitting bedside trying to keep our child alive. We have seen you sprint to our child and save their life. We have seen you sprint to another child and it not go the way you hoped for. In that moment we all want to hug you.               
  12. We welcome many new people into our child's life. Many who never would have said even "Hi" had they not heard of your superhero child. What hurts us is when friends, and family suddenly appear from the wood work when times are bad but are no where to be found when things are going great. When the huge milestones and victories occur it can be just as lonely as the weeks after a traumatic set back. If you aren't here for the good times then trust us, we don't need your sympathy and visits during the bad times. Visiting our child isn't a good deed or part of some check list. Us moms are in pain but we still want to talk about that TV show we love, or the news or a movie we watched.    
                                    
Photo by Julie Johnson on Unsplash



Comments

  1. A beautifully composed memoir of the love you have and the strength you find in a blink of a moment for your child. We, Mothers of the grown and untraumatically touched children, revere you. Because we do not want to find out if we would be able to be as good, or as strong. The mere thought of how we would balance all the days fears with sanity. A sanity that needs to prevail for life to endure. How each bleep of electronic life giving equiptment doesn't have you wired and incapable of doing what must be done.
    We feel the weight for a second as we pass the room where you find the courage to stroke, soothe and sing to your child. That glimpse is all that is needed to make us invisibly bond. Feel for the Mother, she who buries her nose in her baby's neck not just to show love ... but to breathe in what could be the last scent of her child. That passing woman that you may think heartless and does not care, she cares, and cannot show how much for fear she makes your load heavier than it already is. I would be lying to say she/I would take your place to help you. Nobody, other than someone doing that exceptional Mothering; will know truthfully what it is to walk in your shoes. To be the superhero you are.
    You are not alone. You are deprived of what the majority of mothers have. I, wish I could give you that. Xxx Thank you for leaving this to be read. You are doing a wonderful job of being super Mum.

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    1. Thank you for taking the time to read this and put so much love into your response. It touches my heart when people understand the picture being painted even if it is hard to fully imagine.

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  2. Kelly, this is a beautifully written piece that helps remind us that parents are as complex and fragile as their children when it comes to situations like this. That question - "how do you do it?" is one that probably won't ever have a real answer. You just do...you get through each harrowing day and night because you have no choice...it's pure love for your child that helps you make it from one moment to the next.

    Thank you for helping to capture what your life is like and sharing it with the rest of us. You have my admiration and love. oxoxoxo

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    1. Thank you for reading and understanding the purpose of this piece. It was a good release of emotion into words for me to share this.

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