The Medical Mom.

Have you ever been so tired that the taste of cheap coffee seems like a blessing?  Have you, looking into the mirror, not been able to remember the last time you showered or even brushed your hair?  Have you ever cried in a doctor’s office, finally letting go of all that stress you’ve been carrying so long?
The medical mama has.
She’s held her child as they’ve screamed in pain from an IV or a catheter.  She has comforted her baby through the metal rails of a hospital crib.  She has found a way to smile in the face of a child who has endured more medical interventions than the average grown man.
When it comes to medical jargon, she has the vocabulary of a tenured doctor.  She has spent the few moments she has to herself researching her child’s condition.  She is tired, but not weak.  She has broken down, but still keeps pushing.  She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.
Oh, but the milestones.  Maybe they’re few and far between, but they are moments you will see such ease in that mama.  She will recant the details perfectly, as she’s played out the moments over and over in her mind.  She has a thousand videos and pictures of her baby to prove they are perfectly made, even if their diagnosis says otherwise.  You have to understand, the medical mom sees things a bit differently than the average mom.  They get to believe in magic, in miracles, and in prayer because they have given birth to the proof it’s real.  Regardless of what anyone could ever tell her, she has watched her child break every rule and negative expectation.  Her baby is heaven-made.
The florescent hospital lights and multiple cords have become the landscape of her motherhood.  The sound of beeping machines is the soundtrack.  She has become defined by the hard edges of hospital walls and the notches in medicine syringes.
She has used every bit of patience on her child and their needs, so she appears to be short-tempered and lacking social skills.  Her days are full of chatting with therapists or other medical moms, as they are the support system that keeps her standing.  Her child speaks to her in their own special language, and no one will advocate for that baby like she will.
She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it.
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Please feel free to like, comment, and share. You can follow my daughter’s story here.
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Photo credit to my amazing husband for capturing this moment perfectly. AirBrush_20180813160403.jpg

Scary Mommy

99 Comments

  • Holly Hodge

    I couldn’t have written this ANY better. Thank you. I’m a micro-preemie mom of a 9 month old that has never been home (yet).

    • Shanna Neely

      I cried, I laughed, and then my heart exploded! All during this one essay. This seems to have been written so effortlessly but yet it home, hard, all at the same time! Excellent read kminor87!

    • Tessa Bryant

      Sending you many, many hugs!! Our micro spent 15 months in the NICU before coming home. She is now 4 years old, and we are still on this journey. Trach, gtube, lung lung removal, 2 lung diseases, missing portions of her brain, 3 heart defects, and more. I am always willing to chat if wanted/needed! Our journey can be found at “Prayers for Raven” on Facebook <3

    • Grace

      Stay positive sweet mommy. We have been there. Celebrate each and every milestone with photos and decorations. It’s so good for your morale. If this is ‘home’ make it as cozy as cute as possible. We did that for Carmen. We have NO regrets!!😍

    • creativescrapper

      Stay Strong Momma. I had a micro preemie as well as we were in the hospital for 352 days before he ever got to know what was waiting for him at home. For us it was his breathing and we eventually had to go with a trach which takes alot of hands on learning before they would allow us to safely bring him home. We are currently riding out that journey. Wishing you and your precious little one all the best.

  • JaleelismyJoy

    I can resonate with every word. As medical mama whose baby is still not home at 6 months. I appreciate you really painting picture of my life. My son continues to meet more milestones surgerically, I pray eventually he can enjoy baby life.

  • Stefanie

    I’m not sure how you managed to read my mind and portray all my feelings and everything I’ve wanted to say over the past 6 months so perfectly. You are a very gifted writer and this brought so many tears to my eyes. I’m so glad i found this ❤

  • nicwyman

    Thank you so much for posting this! My wife shared it with me and it’s perfect! My three-year-old son recently had a kidney transplant And this article is spot on. It takes an amazing mother to get through this and your words mean more than you know! Thank you
    I’ll be looking to forward to your next post

  • Miranda

    Thank you. My little man was born at 33 weeks with Down syndrome and a bowel blockage. He was in the NICU for 2 months. He’s almost 2 now. He’s had 3 surgeries and getting ready. for his next soon. A week after we were home after being released from the NICU. We went back for 6 days for RSV. And since then we’ve been in the er for Croup 4 times in a year

    • Valerie

      Wow…our stories sound so much alike! My daughter Brookelyn was born on April 30th 2018 at 32w4d, with Down Syndrome and a duodenal atresia! She had her duodenal surgery on May 10th, and is awaiting heart surgery. We are still in NICU, haven’t been home yet, but we continue to pray!

  • kristinagrant83

    This definitely speaks to me. We have been navigating the road since before our daughter was born and things just keep getting more complicated. The diagnosis keeps changing every time we turn around, but at least we are finally getting somewhere. Much love to you

  • MR

    This is beautifully written. My daughter is now 5 and I was there not so long ago. Pierre Robin Sequence, cleft palate, ASD in her heart, sleep apnea, low tone, lazy eye surgery, ear tube surgery 4 times, probably more that I’m forgetting to list. 7 week stay in the NICU, 2 years with a G tube and pulse of and heart monitor at night.
    So many of those sleepless nights seem like a distant memory now, a lifetime ago. Now our beeps, buzzes, and cords have turned into follow-up visits, therapy appointments, and IEP meetings.
    Hang in there mommas and pappas you’re doing a great job! It’s all worth it when they hit a milestone, give you a death grip hug, or quietly fall asleep on you. Those are the lasting memories.

  • ccfuhriman

    I’m not a Medical Mama. I’m a RN who takes care of these precious miracles when they are at home. I do private duty pediatric care at night. I can’t even express adequately how wonderful and strong Medical Mamas (and Dads, too) are. They love their child and give their lives to them. And I’ve been the support for these amazing people. And I’m thankful that I get to share a little bit of their child.

    • kminor87

      I have to tell you, that for the first few weeks of my daughter’s life, her nurses were my best friends. And now, even at our pediatrician’s office, the nurses know more about my personal life than I would care to admit! You are an amazing woman for caring for our babies like we do, and from all the medical moms, I can say we are grateful.

  • Tami Cannon

    This is our life. We may not have asked for it. But boy, we took it and ran with it. No one knows the heaviness or heartache like us medical mommas. But the Joy’s, oh my the Joy’s are so great and indescribable. The first smile, or the first roll over. Or even the first oral feed. It is the little moments that keep us going. Keep us fighting. The years go on, each one bringing a new challenge a new fight.. but each one is just as important as the last.
    My “baby” is now 23, but the road was long, curvy, sometimes treacherous. But we made it! The medical procedures turned in to law suits against the school system. But we did it so the children behind her didnt have to endure the same thing she did. She is a beautiful young woman now who is mostly independent despite her wheelchair.
    My heart and strength go out to each and every one of you. Keep up the fight momma and know that you have each one of us in your corner!!

  • Julie Schmelling

    I am the grandma of two very special, 22 month old, identical twin girls. Lola & Addy were born at 28 weeks. Addy was born with Arthrogryposis Multiplex Congenita. She has very little muscle in her arms and legs. At about 3 months, our angels were diagnosed with Olmsted Syndrome, an extremely rare skin condition. As the grandma, it is overwhelming the medical procedures, surgeries, therapies and appointments with specialists. I can’t even imagine what my daughter and her husband go through. They are strong and amazing advocates for those little girls I try to help as much as possible. It has definitely given me a new understanding of what parents of these special little angels go through! God bless you all!

    • Debbie

      Our son is CDH too…he just turned 15 months old. These kids are warriors. Our son has taught us so much, he is our inspiration & hero. Being a medical mama is hard, it is so hard….and terrifying but we are all warriors too.

  • D

    Beautiful. Your words are so strong and accurate in every way. So much is written about special needs children, but rarely do I see words about medically needy/fragile moms. We’re 10 surgeries in by age 5 and traveling for our “summer vacation” to advocate for him and get second opinions stated away at a highly rated hospital, all to pay cash because I believe my child can be more then I’m told, I just need a surgeon to understand me.

  • Heather Snow

    I teared up reading this because until you are a medical mom it is hard to understand the pain and love you experience every day your child does something different. This was beautifully written and I will share thi for al my medical moms out there.

  • Rochelle

    This made me cry. This is me. This is who I have become. For five years now. It’s difficult for others to understand us. Thank you for writing for so many of us. ❤️

  • Crewv

    Thank you for this beautiful post! It could not be more true as we have one special needs baby medically and are expecting another one in a few weeks who will have to fight for his life. May God bless you in your journey and I hope you continue to see the rainbows after the storms.

  • Julie

    It’s nice to read things like this. Iv felt so alone at times, thinking no one has ever had to go through it . I know I’m not alone and I wish I had the gift for writing like she does, so eloquent and you can feel her emotions in it. I feel ya momma I’m that momma too! 🙂

  • Kim Aberle

    ❤️❤️❤️ This is me also!! My sweet baby girl has 22q 11.2 deletion syndrome, but she is a fighter and she is fighting something I wouldn’t wish on anyone. I wouldn’t trade her for the world!!

  • Caitlin

    I love this couldn’t have said it better my son was 10 weeks early had a heart defect a grade 4 brain bleed pneumonia premie lungs open heart surgery and is now just shy of 3 yrs old and is about to have his second open heart surgery it’s crazy how your sitting there thinking how will you make it through seeing your child being poked or put on a vent or even hearing those alarms go off from the machines then you look up and see that sweet face and know no matter how many tubes and machines are connected it all disappears and that sweet resilient Little person is the reason 💙 prayers for every family 🙏

  • Susan

    This was so very well written. I have 8 year old son who at 3 battled a very aggressive stage 3 cancer, and 4 months into treatment he ended up showing symptoms of rheumatoid arthritis took 2 years for a diagnosis. And still 2 years later still have not found a group of meds that work for him. He has undergone countless surgeries, over 50 MRI’s, 20 ct scans, xrays…. he recieves nightly injections from the damage done to his body from his life saving chemo and radiation. His arthritis is debilitating him. I have never met someone with so much ambition, he is my hero!

  • Rhonda R Bates

    I have a daughter who is a medical mom also, I have never been so proud of her in all my life. My heart goes out to you medical moms and the struggles that both you and your child and the family endure. there is no normal, it is day by day, sometimes hour by hour, or minute by minute. I pray for all of you medial moms and their babies! your truly are the heroes in their lives. Reading this story brought tears to my eyes. this came at a good time as my daughter and her husband spent 9 hours in the ED last night before our sweet Reese before being admitted. Every day with your child is a blessing and a miracle from God. As a Grandma, I know I am very blessed! Love and prayers!

  • Stephanie

    My boys were both diagnosed with Marfan syndrome. A connective tissue disorder. We have not had many hospital stays but lots of doc appointments some. One year 3 a week. We are currently at 29 doctors. Besides Marfan syndrome both boys have high functioning autism and ADHD. My oldest has a bleeding disorder and mental health issues (this is the part everyone keeps quiet). My youngest is severely dyslexic and has been emerged into a intensive reading program that has not given him a break. I am a medical mom but I have not been in the hospital for long periods of time. 10 days was the longest stay. We have to look forward to heart surgery and probably spinal. Or pectoral surgery. We are still. Dealing with the unknown. And iam 100% alone in parenting. I am in these situations alone with my kids. It’s hard, lonely, scary, and empowering and the love you have shared with your kid is a bond unbreakable because of the stuff you have been through….

  • Linda

    I am not a Medical Mom, in fact I am blessed with healthy children and grandchildren. I admire these moms and pray for the children. Here is my question. What could someone like me do to bless these amazing moms? What type of things would help most? Or what little things could possibly bring a smile or some type of relief?

  • Lacey

    I love this. I’m a mom of a micro preemie born at 25 weeks. She was 300 grams at birth. This post captures exactly what it means to be the mother of a medically fragile child. I get told I’m “snappy” all the time but this post made me feel like that might just be a normal reaction. God bless you and your sweet child.

  • Sommer C.

    My twin sons were 31 week preemies and only stayed one month in the NICU. It was hard.
    Our five year old daughter almost died in May and that was the most painful thing I have ever endured. It started with an epidural abscess which led to an emergency laminectomy (spinal surgery) spanning five vertebrae. We were overjoyed during recovery when she regained her bowel and bladder function as well as her ability to walk. We weren’t sure she would.
    She was only home a couple of weeks when she got really sick and we took her back. The next thing we knew she was in acute respiratory failure, her heart was failing… she was sedated and on a ventilator and one night we watched in horror after she deintubated herself and they had to save her. She had every test imaginable and no diagnosis for why she was dying.
    Then… she slowly started getting better. All they could figure was it was a severe reaction to the antibiotics she was on after the spinal surgery.
    We have been home nearly 3 months and to look at her, you would never know what she went through. But I know. And the trauma is very, very real.
    Her story is on Facebook as “Shiloh’s Medical Mystery” if you want to read it.
    Hugs to you and yours. <3

  • Debbie Brander

    We navigated the medical system with my adult son who battled cancer for 3 years and passed away in 2008. I cannot even fathom having to do it with a little one who wouldn’t understand all the “pokes and prods”. It was the only time I would see my grown son cry was when he would see a little one pass by on a stretcher, the tears would come and he would say, “Mom they can’t even understand what’s happening to them, it so unfair”. I pray for you and your little one.

  • Hannah @Sunshine and Spoons

    My medically complex son is 4 now and is doing amazingly well, but his first few years were intense and rough. We found out when he was 2 that he has hypermobile Ehlers Danlos Syndrome or hEDS. It turns out that all 3 of our older children and I have it as well (I’ve always been a bit of medical mystery so that really explained a LOT). With 5 people in one family who have hEDS, we spend a LOT of time driving (1.5 hours one way) to the clinic and at the appointments. As EDS is a connective tissue disorder, it affects every part of the body and so each of us has a whole list of comorbid conditions and specialists. I’ve had to accept that being a medical mom is my life now. Thank you for writing so beautifully and honestly about that life.

  • Anci

    My first reaction after reading just a few words was tears! I burst out in tears reading MY story of emotions and fight for my children! Not anyone can print the emotions of MINE unless that person has been there, been a medicine mom herself! ❤
    Our first child was born in 28w5d, 935 grams and we spent his first 3,5 months in life at the NICU in four different hospitals. Now he’s 12 years old and an amazing, smart, empathetic, humorous, caring young boy, but we still battle doctors appointments every three month.
    Our second child was born in 25w2d, 422 grams and fought all her life (105 days) in the NICU before she tragically passed away.
    Our third child is our miracle, born in 37w5d, 2890 grams. She is everything and more!

  • Paul Sadler

    The phrase that stands out for me as advocate for my son is the number of times after giving his patient history to ER attendant, PT, ENT specialist, new ped, etc, they pause for a second, and then ask, “Do you have a medical background?”. Nope, just a kid who has outgrown most of his early issues all on his own…

  • Hannah

    This hits home and close to my heart my son age 8 is currently battling neuroblastoma cancer and this is the life we life I couldn’t have said it better myself for what we mama’s deal with from day to day! Thanks for Sharing!!

    • Jennifer

      Hanna, I hope your son is being treated somewhere similar to or at St. Jude’s in Memphis, Tn. They saved my sister. Originally they thought she had Neuroblastoma, however, she had a Wilm’s Tumor. She was 6 years old. She is currently one of the oldest surviving patients from St. Jude’s. Married 25 years with 2 children, after being told she had a 5% survival rate. Miracles happen and I pray that you have one.

  • Alyssa Combs

    Thank you for writing this. The lack of sleep and constant anxiety wear me down and turn me into dragon momma most days but there is such comfort in knowing God goes before us and there are other mommas feeling the EXACT same way regardless of diagnosis. May God bless you and your family! #Godisgood #nevergiveup

  • Melissa

    Thank you for writing this! Truly beautiful! I too am a medical momma of a two year old diagnosed with multicystic kidney disease and epilepsy and are currently waiting to hear from genetics to know if there’s a link between the two or if there’s anything genetically we’ve missed! My husband and I are also both nurses in adults. So we experienced both sides to this and being a medical momma is not easy! For me first and foremost I had to except the fact that my life with my little girl was not going to be the same life had I had a healthy child. I told my husband while I was pregnant, most mom’s would be worried about the color to paint their childs room while I was just worried if my child would live! So many Dr. appointments, so many tests and pokes. Needles put into her head because her veins in her arms were too small, ultrasounds, mri’s, ECG, feeding clinic, pt/ot and sooo much more! Then I needed to grieve this because I felt cheated! I longed to just only worry about the normal baby things. I wanted to worry about being woken up at night and puke and poopie diapers and food on the floor! Instead I’ve worried about, “did she get enough fluid today for her little kidney to function properly?” I worried about things like “did she pee enough or too much?”, “did her little jerk mean she’s having a seizure?”, “why won’t she eat, is she gaining enough weight?”, “is she breathing?”, “is she crying because she’s in pain?”, why is she not talking or walking yet?” And on and on it goes. I’ve done almost everything to capture her little moments and spent money on things like photo books because I worried about the tomorrow’s, the what ifs, and the just in cases! I’ve done alot of crying and yelling and so much praying that God is probably tired of hearing from me lol! Ohhh and don’t forget all the negotiating because if anyone is listening i’d do anything to switch with her! I’d take her spot in a heartbeat so she could grow up and not ever worry about the things I worry about now! I’ve been so depressed I haven’t wanted to leave my bed and so angry I’ve wanted to run away! Funny how grief can change you! But had I had a completely healthy child maybe I would have taken it for granted! The times I’ve been so tired and up at night, I thank God I have a child to hold close and to hear cry. The sweet smell of her skin and hair especially after she’s finished splashing around in the tub. Every laugh and smile I try to bottle it up and store it in my head so I can replay it over and over again! I look at how strong she is and how brave she’s been! She’s resilient and loves life and at two I see this beautiful little girl who has magic in her eyes and so much love in her heart! I’ve been told that my husband and I are so strong and courageous and she’s so lucky to have us! But no….we are the lucky ones! She has taught me what it is to love! She is constantly teaching me what’s important in life and what really matters! For all those medical mommas out there and daddy’s too, just know that it will test you, it will at times almost break you but in the end, it won’t! For whatever reason God and your little one chose you! It will get better! I’m not sure what our little ones future holds but I have to live for now! And right now I’m the luckiest momma out there! Praying for you all that you too feel better and your little ones get through this!

  • Katie Allen

    I once read an article about post traumatic stress amongst parents like us. I found it really useful. Someone asked if there was anything she could do to help medical Mums. My response would be to volunteer at a children’s hospital. When my son is in hospital we don’t leave his bedside, yet many children are left in hospital alone. This breaks my heart each time I see it. My son has a disability and he has spent far too much time in hospital, but he is loved and held and comforted, every day of his life. If you want to help, hold one of these children.

  • Shawn

    Although my baby is 13 now she was diagnosed with Crohns at 10 and had emergency surgery at 5 for a cyst on her bladder wall. She has had 3 surgeries under her belt and too many tears to count in these last two years. So I can relate to so much of your article – Especially the lack of patience part. In the months that she was at home in constant pain & endured many tests my level of patience for anything else was zero. At times it still is bc I’ve spent much energy and effort worrying & trying to keep her healthy. Even those closest to me will never get it. Thank u for sharing your story – each one of us feels less alone to hear these stories.

  • Nicole morton

    I’m a medical mom currently sitting in children’s hospital with my daughter as she just had a functional right hemispherectomy 10 months old she has sturge-weber Type 3 this really hit home thank you

  • Loris

    This hit home for me. I could not have written it any better. Thank you!! As a mother of three children with life threatening diseases, I can almost taste my own exhausting vibes, but not in front of my children. I am strong because they don’t complaint of what they endure each passing day. They make me a better human being.

  • Lisa

    My heart just breaks for my daughter, it bursts with pride and beats waves of love hope and healing energy through the universe for Milo. His heart is broken and I would trade my life for his in a heartbeat so he could grow up with my daughter Courtney as his amazing mother. So he would know her strength, her devotion, her great compassion and inner beauty. I pray for him and all babies everywhere, for all you medical moms and dads, nanns and poppys, for all our lives to be filled with hope, joy and love.
    God bless you all 💙💙💙

  • thebreastfeedingmommy

    This is so relatable for so many of us medical moms!
    You have such a beautiful writing style!
    I would love to have you do a guest post/article on Serving ALL Moms|The Breastfeeding Mommy !
    If you are interested please fill out a contact form in the menu tab on TheBreastfeedingmommy.com
    Or just let me know by email!
    Looking forward to hearing from you and you are doing a great job mama!
    Bridget
    Creator/Head Writer
    Serving ALL Moms|The Breastfeeding Mommy
    http://www.TheBreastfeedingmommy.com

  • Erika

    Our journey is just starting. He is only 6 1/2 months old, but I already completely understand. Thank you so much for this.

  • Tina Levett

    To know I made and gave birth to that medical mum and all that comes with it, to know unwittingly I’ve gone through all the wonderful times of her childhood not knowing I was preparing her for these times ! to know when I sleep at night ( or try to ) she is ( like all you medical mums ) not sleeping or eating or even thinking straight or barely surviving takes the wind out of my sails , sucks the joy from my days , drains my whole body of energy , of life of ever feeling normal , yes these aren’t pretty words but they are the truth and don’t even lay a breath on the daily crushing feeling of all of you medical mums ! But I have light at the end of the tunnel for I have God and each night I am able to give it all to Him and know that’s where I put my trust and hope ♥️

  • Wendy

    Wow, that is life summed up in a few paragraphs. My “baby” isn’t little, she’s 22 but has a severe brain injury from a car accident 2 years ago. This is all our life has been since then. Bless you and all you mamas. It’s true if you haven’t lived it or worked in it it’s just impossible to explain. Thank you for these words put together so perfectly.

  • LadyPamelaRose

    God bless you all on this medical journey and beyond. I took the journey as a single parent when my daughter was one and my son was 2 and their dad had walked out on me. My daughter was a “failure to thrive” baby due to a protein allergy and it took several months of hospital time before we got things on the right track. Now she’s a strapping 35-year-old 5’8″ woman in perfect health!!!
    Stay strong and never doubt you will achieve what you need to get healthy and strong. Prayers from this Canadian Mom who’s been there!! Love, Pamela

  • Brenda

    This was so perfectly written. The words to describe what many of us mothers have gone through and have felt, are in their truest form. I’m the mother of a micro-preemie…our 23 weeker. Thank you for sharing this with us all. I know that I needed to see these words and to feel their meaning. <3

  • Chelsea Mincy

    Very well written!!! I am a medical mom to a now one year old who spent 4 long months in the NICU. He wasn’t suppose to make it after day 6, but God intervened. These words are so touching, and emotional!! Thank you for sharing!

  • Jadrian Clausen

    You just described my life in a way that I haven’t been able too. Thank you for the validation, the strength and the encouragement. I appreciate it!

  • Marilyn Treadway

    My daughter in law is a medical mom she knows more than the doctors remember because you r at speclist 5 or6 times a week little Giddion is still alive because she is willing to do that Gifts is going down some she will work her manic hopefully many times

  • Mary Vuylsteke

    Wow, this is exactly my life! I mean my son came full term, but man he is my miracle baby that I never thought I’d be blessed with but God gave him to me! Which I’m forever grateful…he beats to his own drum & I’m so grateful because he unique and special in his own way…which seeing him grow & hit a milestone or two are miracles & blessings. So thank you for sharing this!

  • Diana van Halen

    I was that mom, my little girl had TTD, (Thrichthiodystrophy)
    We didn’t know , the docters could not find out what was wrong,and her diagnose after she was 2 years old they said PIBIDS syndrome.
    But i saw the connections each time after she had an x-ray she got worse.
    They didn’t believe me… She died 8 months later suddenly.
    And now after 30 years! the dokters said i was right after all…
    I found her image on the internet…it was a shock, but i am glad that i know now, her life was important, we loved her: Nathalie van Halen, known as patient : TTD1RO, het meisje met het broze haar ( the girl with the bros hair)

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