Disclaimer: I, in absolutely no way, want to lose sight of the true hero here, my husband and the patients that fight so tirelessly day in and day out. The strength and healing comes from them, both physically and mentally. What I hope to achieve through this post is awareness for all of those that might be fighting along side those fearless patients and struggling or feeling discouraged. It is our job as their family and friends to do our part in supporting them emotionally, even in just the most simple and basic ways. I am so incredibly grateful to be one that is supported so very well, and to have experienced first hand how impactful this support can be.
I’ve done my very best these last 11 months. I’ve had to process the possibility of losing my partner, my love. I’ve had to come up with a plan of what parenting alone for the rest of my life might look like. I’ve gone over in my head how I might have to explain to my kids that they’ve lost their father; what that unimaginable scene might entail.
I’ve forgone my social life and and pretty much every ounce of self care. I’ve asked for my kids patience. I’ve asked for others help when it’s felt incredibly uncomfortable. I’ve facilitated space for him when he was recovering or not feeling well. I’ve tried to keep everyone together emotionally; telling my kids daddy’s getting better. Assuring friends and family that all is going to be ok. Reminding him that we’ve got this.
I’ve missed more holidays with my children this past year than I’ve been with them for. I’ve prayed with them for healing for their daddy. I’ve tried to explain to them why this is happening to our family. I’ve tried to give them as much normal as humanly possible. I’ve balanced being honest yet protective. I’ve spent every waking second worried to the core about them.
I’ve made sure he is eating the right things. I’ve reduced every risk factor in our home and life imaginable. I’ve pushed him to do what makes him happy and whole.
I’ve seen my husband surrounded by healthcare professionals who were panicked and calling codes, fighting for his life. I’ve been told by doctors “this doesn’t look good, I am very concerned”. I’ve faced real, raw fear. I’ve seen his blood splattered on his care teams garments. I’ve waited for him to wake up. Waited for scans. I’ve been the optimistic one. I’ve encouraged. I’ve seen the bright side because I’ve had to.
I’ve trekked around a foreign city trying to find a place to stay. Signed and declined lease agreements. Gone to sleep realizing I hadn’t eaten yet that day. I’ve cried in total strangers arms, because of my exhaustion in combination with their compassion. Humanity is so good.
I’ve learned how to operate IV pumps and drain fluids from the body. Test blood sugars. And blood pressure. I’ve learned the difference between intubation and ventilation. I’ve researched and read and translated information. I’ve advocated. I’ve got every sign and symptom of a complication memorized in the back of my head, constantly evaluating his state.
I’ve been a food deliverer, errand runner and 24 hour a day walking sanitizer. I’ve slept on hospital benches in waiting rooms. Gone more days than you’d like to know without a shower or clean clothes. I’ve prayed in empty churches asking for strength. I’ve lit candles. Pleaded.
Waiting to go home, in the middle of all of this uncertainty in the world. Watching from all these miles away. Watching the others who get to hug my kids when they are sad. Watching those that get to help them navigate their school work. Explain to them what is happening in our world. Watching them tuck them in at night and tell them good morning first thing.
I see the sacrifice and work of those helping at home and how badly I just wish I could do it myself. The guilt. The burnout of others I worry about. The ache in my heart when the kids ask when I am coming home.
There is a lot I’ve had to give up over this last year. And I’ve been able to replace that with faith. But what 6 traumatic weeks away, no help out here and no sight of the end has done to my heart can not be replaced. I am different.
I’ve lost every ounce of control I’ve ever had. Stripped of it, slowly, over this past year. And now, there is not one single decision left that I get to make, not even when it comes to my own children. The only choice I get to make is to choose hope or not. And quite frankly, I have to consciously do this each and every day.
I want zero pity with this. I want not even the slightest, because I am the one that is going to benefit from all of this when it’s over, I know that. I will be stronger and fearless; harder, in a way that was probably necessary. We are going to get Nick fully healed and go home to our beautiful children; that is an incredible gift.
What I want is for you to understand that I am just one among millions of people caregiving each and every day. While we sit here in our comfortable homes making everyday choices, someone is out there struggling and has lost all control. They are weary. Run down to the bone. And scared.
I’m one of the lucky ones. I have a husband who tells me my value. I have friends who check in on me and spoil me with so much love. I have family who are willing to help in any way needed. A community that encourages me. Some do not. Some are completely alone. Some never get a single hug or a shoulder to cry on. Some have never even been thanked or asked how they are doing.
What I want is for you to pick up your phone and call or text a caregiver that you know, no matter their age, gender or background, no matter their story. Tell them that you are sorry for the cross they are bearing. Tell them that although you may never understand the depth of what they are going through, you know its not even close to easy. Tell them you can’t imagine the mental exhaustion.
Ask them if they are ok, even if you know they are not. Ask them if they can tell you what’s the hardest right now; I promise, they will open up. Tell them that you think they are really strong and that they have inspired you. Find an emotional way to help them, not just a logistical one. Even just text them a heart, so they can feel yours lifting some of the heaviness off of theirs. It will mean more to them than you know, and it will make you feel so good inside.
Here is my note to each one of you caregivers, from the bottom of my empathetic heart:
I think and pray for you daily. I find strength through you to get through my days, knowing I’m not alone and that others have done much more difficult things with much less positive outcomes. I hope you feel honored by others around you in some way, even if it’s just the simplest thank you. You are not overlooked. You are necessary, and so important. I see you hiding behind that patient, and I think you are so very amazing 🧡