Hand to Hold's Official Blog: Written by Parents for Parents

“I Understand;” Offering Comfort to a Hurting Heart

My son, James, is a former micro-preemie who has struggled with eating and weight gain for quite some time. A few weeks ago, just after his third birthday, he was at the point of needing a g-tube placed. Even though we’ve thought about it and discussed it for quite some time, the procedure itself happened very quickly. I’ve experienced a whirlwind of emotions the past couple weeks as we’ve gone through another surgery and another hospitalization. The situations change, but the emotions are as raw as ever.

I’ve been strong because that’s what my experience tells me to do, and it usually makes things a little easier. I’ve given myself pep talks and decided to just focus on all the good stuff. ‘Be positive, be strong, you’ve made it through much harder times.’ I’ve listened as the doctors say it’s not a big deal, he’ll be fine and out of the hospital in a day or two. I’ve listened to moms who have done this before tell me it was the best thing for their child. I’ve listened to others who have no experience with this tell me it will be the best thing for James. I’ve heard everyone say all the right things, and I’ve tried to convince myself that the benefits out-weigh any possible complications that could arise. I’ve done all that, yet I still break down. I still cry. I still hate seeing my son go through yet another procedure. It doesn’t get easier. It’s different, but not easier.

Following his surgery I sat in recovery, holding James and crying right along with him. His nurse said something to me then that I won’t forget. Something so simple, but so powerful. She told me, “I get it, I understand.” She went on to tell me about her dad and how she watched him recently, laying in a hospital bed on a ventilator. She had seen patients in the same situation for years, but it wasn’t until she watched her own dad that she understood the tears she saw from her patients’ families. She understood. With those few words she validated everything I was feeling. It was ok for me to cry. When you’re hurting and scared, knowing someone understands makes all the difference.

I’ve thought about that experience many times in the last couple of weeks. I’ve thought about how that simple kindness made a difficult situation a little easier to bear. She could have said nothing. She could have let me cry, trying so hard to stop because I’ve seen the looks before and felt judged and weak for crying. She chose to say she understood.  I’ve thought about other times when a simple kindness would have gone a long way toward healing my hurting heart.

James in the NICUWhen James was in the NICU, there was one day in particular that his nurse seemed annoyed that I was sitting at his bedside crying. I was crying even though he was “stable and having a good day.” I understand that as a nurse you see this all the time. This is your life. You spend 12 hours a day, 2 or 3 days a week, in the NICU caring for these fragile little babies. You are an amazing nurse. You’re incredibly smart and I’m more thankful than you will ever know for the care you’re providing for my son. I know he is alive because of what you do. But please understand, I’ve never done this. I’ve never even had a baby before, let alone a baby born 17 weeks early weighing less than one pound. His best day in the NICU is worse than anything I imagined my life to be like 6 weeks after he was born. I am the most broken I’ve ever been. I’m scared out of my mind and feel incredibly alone. So many eyes are on me as I try to be strong and learn to be a mom to this sweet baby boy. Please don’t judge me. Please be compassionate and understanding, and let me know it’s ok to cry.

James was evaluated recently for placement with the local school district’s three-year old program. His evaluation team was very kind and understanding, but when I asked a question they answered just a few sentences ago, their body language said otherwise. Please don’t be annoyed with me. This is your world. You do this every day. I’m nervous and scared and can barely breathe because I’ve never done this before. My child has been home with me because he was too fragile to attend daycare. He gets sick all the time and can end up in the hospital over a simple cold. And now we’re talking about my baby boy starting school. Believe me, this is important and I want to understand every detail. I was listening to every word you said very carefully, right up until you said the communication skills of my almost three-year old son were equivalent to a 10 month old. That’s when my world froze. I couldn’t hear anything else you said. My head is spinning and I’m fighting with everything I have to hold it together. Please be kind, go slow, repeat things, and understand that I am hanging on by a thread.

James, Post G-Tube SurgeryTo the surgeon who placed a g-tube in my three-year old son, and didn’t have time for me to ask a few questions. You’ve done this before, hundreds and hundreds of times. You’ve done much more serious, much more complicated surgeries hundreds and hundreds of times. I’ve never done this before. Having a g-tube placed in my son absolutely changes my world. I’ve never used a g-tube or taken care of one until now. I’ve heard lots of stories about things that can go wrong, and the pain they can cause, and that scares me. Please show me a little compassion and spend five minutes with me. Answer my questions and put my mind at ease. Those five minutes will make all the difference to this mom, and ultimately, to this sweet little boy.

To the tech who shook his head and said “Really?” as I carried my son into the room he was being transferred to following surgery. I know this is your job and you are incredibly busy. You probably have more to do during your shift than you should, which makes it difficult to do it all well. But this is my son whom I love more than anything in this world. He just endured another surgery. He is in pain, scared, and feeling miserable. Please show him a little kindness and compassion, and even though it isn’t your job, make me feel welcome. I’m scared and nervous too because I haven’t done this before. This surgery, this recovery, this experience is all new. I don’t know if it will be a smooth recovery or one filled with complications. I don’t know how the next 24-48 hours will go. I’m sleep deprived and anxious and want only the best for my son. Please be that for him; be the best. He is an amazing little boy who deserves it. He’s not just another patient they sent up before the room was ready, who will be here for a day or two, be discharged, and leave you to do it all over again. He’s my son and he matters.

Our body language, our actions, and our words can have a profound effect on others, especially when they are hurting. We are impacting lives moment by moment. Just think of all the good we can do when we slow down briefly and offer a little compassion. A smile. The words, “I understand.” We’re all busy. We all have struggles and hardships we’re facing, but when we take a moment to do the stuff that really matters, that’s when we can change lives. That’s when all your experience pays off and you can do what matters most. You can offer comfort to someone in pain. There isn’t much in this world more important than that.

Alison Epps About Alison Epps

Alison (TX) has one child, James. He was delivered by emergency c-section at 22 weeks 6 days gestation, he weighed 15oz. and was 10 ½ inches long. He endured a 160-day NICU stay with 4 surgeries and multiple complications. He is now an active 5 year old who recently started Kindergarten! You may connect with her on her personal blog, Facebook or email, 22w6d@gmail.com. She hopes to encourage change in hospital policy so babies born at less than 23 weeks gestation will be given a chance at life.

Comments

  1. Alison, this is so perfect. Thanks for saying this. There are so many times that I thought, “If only that person could step back for a moment and see what they’re doing! Would they really do this on purpose?” So I’m learning how to say this kindly and directly when I’m in the middle of the situation. “I need you to pause and be patient. This is important.” I’d like to share this with all the professionals we work with!

    • Erika, I love the direct but kind way you’ve worded your request for people to slow down a minute. It’s perfect. Hope you don’t mind if I borrow that in the future!

  2. Alison,
    Once again you have really captured this beautifully. My experience has been different than yours but your insight has helped me recognize something I was unaware I was feeling. I hope that healthcare professionals get a chance to see this.
    Thanks for taking the time to share.
    -Shannon

  3. Thank you for writing this. Sometimes, even well meaning friends, family & providers try to help us “look on the bright side” instead of doing what that wonderful nurse did, meeting us where we are…being ok with feeling uncomfortable around us if we cry. The simplest gift is the hardest…just be there, acknowledge our feelings, don’t put parameters on what we are going through. You said this so beautifully! Thank you so much!!!

  4. I found this link because my daughter in law posted it on facebook 🙂
    Her husband, my son, was born 10 weeks premature 32 years ago. Babies his size at that time didn’t survive, nor did babies your son’s size.
    But he is a miracle as is your son!
    I distinctly remember an intern at the hospital where my son spent his first two and a half months , calling me.
    I stayed home that day because the day before, our son had a massive brain bleed. We were told her wouldn’t live. They were doing brain activity tests that day and I couldn’t bear it. I was 22.
    I had been there every day the first 16 days. But that day, I wasn’t. Why? I was embarrassed because I couldn’t stop crying.
    She called and I talked to her. She said, “Where are you?” “Your son needs you more than ever now.” I wept on the phone and she compassionately talked me through it. An hour later, I was back at he hostpital, sitting by his side, longing to hold him and praying he would live..
    Obviously he did. 🙂
    His daughter has a g tube.
    My grand daughter is precious! Her g tube has had it’s complications, but she is a happy, sassy 2 year old!

    • Christie, What a blessing that intern was. So thankful they were there to offer comfort and give you the strength to be by your baby’s side. Often people don’t know how to help a crying mom. I know I’ve been embarrassed and fought so hard to stop the tears many times. So glad they made that call to you.

      Congrats on a happy, sassy granddaughter! We’ve experienced a few complications from his g-tube, but the benefits have far out-weighed them. Hope your granddaughter is doing well!
      Alison

  5. Alison,
    My wife and I endure the same type of emotions daily when it comes to our preemie Asher. He was born at 28 weeks and is profoundly hearing impaired, basically deaf. Many people don’t understand that even though he is healthy and active that we as his parents are mortified when he has to have another procedure or has to have a test done that means he needs anesthesia. Family, friends and even medical professionals just don’t know the fear a NICU parent has to face on a daily basis. Asher spent 77 days in the NICU, no where close to what your little guy endured but I feel for you and your family! You want to ask all the questions you can, you want some understanding and you want people to know that you being neurotic is keeping your little boy safe and healthy! Don’t stop fighting for him, my wife and I will fight with you to make others understand the life of a NICU parent. Life doesn’t get magically better when you take a NICU baby home from the hospital, I wish more people understood that! Thank you for sharing and may God Bless you and your little boy!

    • Paul, Asher sounds like a strong little guy. I’m so glad he’s healthy and active, and I know that didn’t come easily. You’ve both worked very hard for that. The NICU days leave a scar. Whether it’s a few days, a few weeks, or a few months, those emotions run deep and don’t fade for a very long time. You’re right, each procedure brings it all back. I’m so thankful for this incredible community of NICU families who get it and work so hard so others will get it too.
      Wishing you all the best.
      Alison

  6. Jodi Prezzia says:

    Alison, I commend you for writing this and completely agree with you. I gave birth to twin micro-preemie babies 11 years ago. My son Jacob and daughter Julianna were born via emergency c-section at 25 weeks. Sadly, my son passed away two days after he was born. Julianna was in the hospital for 3 months and I am thrilled to say she is a thriving 11 year old girl. However I do remember my time in the hospital feeling all the things you are feeling. She endured many procedures/tests and I can remember sitting next to her and just crying many, many times. Praying that she was not in pain. While the nurses in the NICU were top notch, a simple I understand from a doctor would have made the world of difference. Thank you for sharing your story, that so many of us have endured. God bless you and your little miracle boy!

    • Jodi, I’m so sorry for the loss of your son, Jacob. My prayers are with you. That name has a special place in my heart. So thankful that Julianna is a thriving 11 year old, wow! What a journey you have been on. Eleven years apart yet our experiences are so similar – crying by the bedside, praying they aren’t in pain. I think those things will always be true for all mom of sick children.

      Thank you for sharing a little bit about Jacob and Julianna. I wish you well.
      Alison

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