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.

This page's content was last updated on Apr 5, 2018 @ 2:25 pm
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