If you are the parent of a premature child, one with complex medical needs or a child whose inabilities the world chooses to prioritize, you know firsthand what sacrifice is. Sure we sacrifice financially and sacrifice time with family, friends, significant others and even our other children to ensure that said child has what they need. And we do it GLADLY! But that doesn't mean that it doesn't come with some regret, grief or resentment. And that's what I would like to talk about...
My mind just went back to March 25, 2018, the day my daughter was born at just 26 weeks. Although a neonatologist came to speak with me concerning what to expect medically, I still had NO idea what. I was about to face. Our NICU stay, though not as eventful as others, started with a BANG. I sat by her incubator as each of her lungs collapsed. I'll never forget those moments of sheer panic that manifested in the faces of the staff. I could tell that they were caught off guard, yet they seamlessly worked together to establish chest tubes, administer medications, contact radiology and comfort my husband & I at the same time. Though they were practically running around the NICU, there was still a calmness in the way they touched her and a peace that allowed them to execute tasks effectively, powerfully and with a clear head.
It was there in the NICU that I learned the two things that all great and EFFECTIVE caregivers MUST have : GRIT and GRACE!
Grit is a person’s capacity to remain intensely passionate about and persistent in pursuing goals over time. It is the ability to persist in something you feel passionate about and persevere when you face obstacles. This kind of passion is not about intense emotions or infatuation. It’s about having direction and commitment. When you have this kind of passion, you can stay committed to a task that may be difficult or mundane (like caring for tiny, critically ill patients, getting attached to them and then making them). Grit is also about perseverance and continuing to work hard, even after experiencing difficulty or failure. I believe that we all can attest to the loss of passion that comes with being a caregiver. We will always be passionate concerning our child's well-being. But the daily tasks that come along with taking care of a sick child can become mundane, exhausting and even daunting. At times it leaves us feeling like their nurse more than their parent. But in those moments, I remember the grit that NICU nurses modeled before me. Had they not continued to try and intubate her or readjust her chest tubes when it was discovered that they weren't in correctly, my daughter may not be here.
Although I've exhibited grit in other areas, I had no idea how much would be needed to raise a medically-fragile child. Some may be saying "Well if you love your child you'll automatically have it." But that's simply not true. The grit required to care for a medically-complex child's medical needs on top of their other basic needs, transcends how you feel. Some days you'll be worn out physically and emotionally and just not feel like doing what needs to be done. But we must remain passionate about their care so that not only will we provide the best care but continue to advocate for them so that they'll continue to receive the best care. We medically-fragile parents are often complimented on our drive and hear things like "I don't know how you do it!" But the way I see it, there's no other option...for me!! I'm sure that most of you reading this would say that your love for your child wouldn't let you walk away from them either. But let's not forget that some parents make that decision for themselves or their child's well-being. So standing by your child is a choice, and it's one to be commended.
Research indicates that the ability to be gritty—to stick with things that are important to you and bounce back from failure—is an essential component of success. And in those moments where it feels like you're being more of a caregiver than their parent, I hope that you'll be reminded that you are a recipient of the grace that only a parent possesses. Parents of the medically-fragile are often seen as “super-humans” as they juggle multiple challenging roles. But my hope is that not only society, but also all of you caregivers reading this, will realize that you are an ordinary person and parent who has been endowed with a extraordinary fortitude and GRACE. Most days, you're just trying to make the best decisions for your family. We often make it look easy, but I've never met a parent who will tell you that this journey is one that they would pick for themselves.
When I am told how amazing a mom I am or how I was "made for this", I am quick to correct them and share that I wasn't made for it, I was GRACED for it.
And it's grace that separates the parents from the providers. Grace is an unmerited favor, an endowing of strength, knowledge, wisdom and ease that you in no way earned. Sure a nurse could change diapers, administer trach care, prepare feeds and give medications. But who stays up all night thinking about your child's future? Who orchestrates every detail of their life to ensure that the child is cared for, even in their absence? And who do these little one's get their undeniable strength, courage and tenacity from? So the next time you get to a point where you feel your strength has run out, your grit has left and now you're working on fumes, remember that it's GRACE that will carry you until you have the strength to stand again. There are so many days that I dreaded getting out of bed because I didn't feel like I had the strength to be all that Reign needed me to be. But then I remembered that although she was the one enduring the symptoms, she still showed up as her happy, smiling and joy-filled self. So if SHE can show up, WHY CAN'T I?!
So when it comes to the question "Am I a parent or a nurse?", I can hold my head high and proudly exclaim that I have the grit be BOTH...but I was graced to Reign Victoria's mom. And that's a position I take great honor in showing up for 25/8.
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