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One Mother’s Story: The Most Powerful Lesson

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One Mother’s Story: The Most Powerful Lesson

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There he was. My five-month old precious baby boy laying lifeless on a stretcher after being diagnosed with a brain tumor. It was an absolute nightmare. My body switched into auto pilot, and all the moments ran together in a chaotic group of memories that I can’t create a timeline for. Somewhere between complete desperation to find the answers and an overwhelming, powerful love I had for this child, I had the courage to stand up and be the demanding mother I always criticized. And you know what happened? It saved our son’s life.

My advice comes from the experience of desperately dragging our son from one medical provider to another, getting the same answer when I knew it wasn’t right and watching our little boy fight through a nine-hour surgery. I learned a lot in those 14 days in the hospital and in the days since. The most powerful lesson I learned has not only kept our son healthy, it has kept him alive. Be your child’s advocate. My advice comes from a mother who understands that being a voice for your child can be the difference between the life and death.

Trust your gut.

As I watched Anthony continue to vomit over the course of five days, I knew that this was not like any other sickness I had seen. The look in his eyes spoke to me, as if to say, “Mommy, please help me!”  We spent the next few days seeing a medical professional at least once a day. Between doctors, emergency rooms and late-night phone calls to the on-call nurse, I was not taking the diagnosis as a virus as our answer. Did I think they would pin me as the neurotic, first-time Mom who was overreacting? Sure! But, did I care? Absolutely not! I knew something was wrong with my son. I felt it deep down in my gut. And because you know your child better than anyone ever will, you need to trust that gut instinct. I would rather look like a crazy Mom and be wrong a million times than be right the one time I didn’t follow my gut. You know that thing they call mother’s intuition? Let me tell you something. It is real! It’s the reason I can enjoy my two-year-old today.

Ask a LOT of questions.

You are not a medical professional; you are a parent. It will be near impossible to process all the information that is thrown at you while, simultaneously, trying to understand why your child is facing this struggle. Ask as many questions as you need to ask to make sure you fully understand what is going on. You will be the professor in the field of health history when it comes to your child as he meets new doctors along the way who know nothing of his past. Be so knowledgeable about their entire journey that you seem to know more than any doctor you meet. You will get there by asking a lot of questions.

Your loyalty is to your child.

One of the biggest battles I fought was within my own mind as we debated whether we should move Anthony’s care to Boston. I struggled with this daily. I felt like I was betraying the surgeons who saved our son’s life. But the truth was that they stopped fighting for our son, and now, we were all he had to get him through this alive. As much as I had trusted our team, that trust was broken during his follow-up care. Bringing him to Boston Children’s Hospital was exactly what he  needed, and if I had to drive to the ends of the earth and then walk 10 miles to get him there, then that is my job as his mother.

Love your nurses.

Our nurses were our lifeline. While Anthony’s doctors performed his life-saving surgeries, his nurses carried him through the many bumps in the road and lead him home to us. Your nurses are the MVP of your team in the game of life or death. Trust them, rely on them, value them, ask them for help. They want to help you! We treat our nurses as if they were as much Anthony’s parent as we are because we wanted them to fight for our child. And that they did. As I watched one of Anthony’s nurses put herself aside, even if it meant losing her job, and fight for the well-being of my child, I quickly realized that these nurses were our advocate. As much control as they could possibly have over the outcome of this terrible ordeal, they would fight until we left here with our child. Love your nurses.

Have hope.

You will look at your child and you will feel desperate, sad and helpless. It will be very hard not to fall apart. So, this is what you will do. You will look at your child, laying there in that hospital bed, and you will fight back the tears, and you will smile. You will smile because you know in your heart that your love will bring them through this. And if you don’t know that, you will smile anyway. Your strength and attitude will carry over to your child. They are the biggest part of you. If you are strong, they will be strong. Nothing will give them more will to fight than knowing that you believe they can make it through this. You will all fight together. And if you don’t win, you will have no regrets.

I never understood the power of being a parent until my son came so close to death that it haunts me. I was never a strong person, until that is exactly what my son needed me to be for him to fight for his life. I’m not a medical professional, I am a parent. And my child is exactly that, he is mine. When it comes to your child, do not fear anything or anyone. Advocate for your child. No one will fight for them like you.

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21 Comments

  1. Kate June 26, 2018

    Aww what a powerful blog post! Completely right though we know our own child and we are there advocate! Hope he is getting better now.

    Kate xx
    http://Www.mummywho.com

    Reply
    1. sarah June 26, 2018

      He’s doing great! Thanks for the support.

  2. Lorrita June 26, 2018

    I am not a mother but this is deffinately for my books. Some of ypur points remibd me so much of how my mom would fight to make sure my needs were met whenever i was ill yet in a way that didn’t put me on the blacklist of nurses who wouldve probably found her demands well too demanding lol. Happy for mother and sons health. And dor tjis article that just made me love mom more than i already do.

    Reply
    1. sarah June 26, 2018

      Aww that’s great that this lead you to remember moments with your Mom and look to your relationship with her! I love that! Thanks for sharing. I hope someday my son looks back and knows that I love him more than anything in the world and I did everything to keep him happy, safe, and successful.

  3. Such an inspiring post. I am a full time physical therapist and I tell my patient’s all the time: YOU are your best advocate. I could not imagine going through the experience that you described above. I hope your precious son is doing well!

    Reply
    1. sarah June 27, 2018

      Thank you. Anthony did pediatric physical therapy for a while and graduated to occupational therapy! Thanks for the support!

  4. Maranda Brakenhoff June 27, 2018

    This was a fantastic and inspiring post..it is so important that we trust our motherly instinct for our babies.

    Thank you for sharing! Praying things are better.

    Reply
    1. sarah June 27, 2018

      Thank you so much! It is important! That’s why we spread awareness so other mothers know to trust their instincts!

  5. Jaci June 27, 2018

    This is absolutely beautiful. I am not a mother myself but it touched a place deep down within me. This is great advice for anyone going through a medical struggle with a child or loved one and is a wonderful testimony to the steadfast love of a mother. Great post.

    Reply
    1. sarah June 27, 2018

      Thank you!

  6. Chera June 27, 2018

    Being a mom is the greatest gift we could ever receive. Great post.

    Reply
    1. sarah June 29, 2018

      So very true!

  7. Kim June 28, 2018

    Wow wow wow. What a powerful post (I shed some tears) . First, you are one strong mama, you fought for him and he will forever appreciate that!

    Thank you for sharing your encouragement and extra push for other moms, it’s amazing! YOU ARE AMAZING!!

    Reply
    1. sarah June 29, 2018

      Awww this means so much! Thank you!!

  8. Caroline June 28, 2018

    My goodness, what a terrific mama-bear you are! That must have been a frightening time for you all. With two small boys myself, your story really tugs at my heart-strings.

    Reply
    1. sarah June 29, 2018

      It was frightening. But Mama Bear kicks in and you just do what you need to do. Then you look back and wonder what the heck happened! Thanks for the love!

  9. Jasmine June 28, 2018

    This I’d such an inspiring post, and you ate a wonderful mother!

    Reply
    1. sarah June 29, 2018

      Thank you so much!

  10. Cindy June 28, 2018

    A mother knows. Powerful post. When you said his eyes spoke to you – hit my heart. I know that look. Keep doing your thing momma! Loved this post.

    Reply
    1. sarah June 29, 2018

      Thank you! Mama knows best <3

  11. Monica June 28, 2018

    Thank you for sharing! I agree as a mother you have to trust your gut!!!

    Reply

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