Some Moments Are Fine By Me
Written May 4, 2012 3:17pm by Amber Gannon Medina
Today it's rainy and chilly and it's the kind of day you want to just sit on your couch and read Sookie Stack house novels. That last part might just be me. It's the kind of day you might want to keep your kids inside and read them stories or bake cookies while listening to the Sound of Music or Oklahoma soundtracks. Ok, again that last part might just be me.
There are certain days I spend at the hospital where I really struggle with overwhelming waves of GET ME OUTTA HERE! Most days I breathe my way through this very primal feeling urge, but other days I admit to letting my fantasies of Mira and the adventures we could be having on the "outside" run wild.....what kind of things would we be doing today if we could escape? Would we visit the inside exhibits at the zoo? Could we bundle up and take a walk with Pow through the misty forest at county grounds? Or would we go swimming in the warm pool at our health club? Any, heck ALL of those sound nice, but I think if given the choice, we would stay at home-singing and talking and baking those cookies until it was nap time.
I wish the hospital experience got easier. It really hasn't for me. And we KEEP. LIVING. HERE. Almost 7 months now. From the time I could create coherent thoughts in my head, I started a mental list of what's been keeping us alive while we are residents of 3 West. Although it goes without saying, I hope everyone who reads this never has to contemplate life in the hospital with their baby... For those who do, I am sure you'll create your own list...this stuff is so unique to every person.
1.) FIND THE BEST NURSES YOU CAN:
I am so glad that in the beginning I didn't know finding the right nurse(s) was so so crucial to your stay and to your baby's well being. I think If I had, I would have made all of are unit's nurses line up and interviewed them one by one. Having a primary nurse who not only is your child's advocate but who also fits in with your family is tricky. As chance would have it, the three best nurses-magically-found our way into our lives. In fact, I know it wasn't chance, it was the hand of fate and I am grateful for them each and every day. They not only make us feel like we are at home, they do so much more: They make John and I go out in dates when we need a break. They ask the doctors tough questions you didn't even know you should ask. They have taught us how to change a diaper, give a sponge bath, calm a crying baby, take a temp, put that crying baby to sleep.... And mich much more. They have taught us the hospital politics-when to push and when not to. WHO to push and who not to. They've comforted Mira when we couldn't be there. They do the tough job of watching Mira cry when they have to give her shots. Our nurses calm us down when we have outbursts and then they assure us we are doing our best. Nurses are what keep you going and if you're lucky they become part of your family.
2.) REACH OUT:
My M.O. has been to pretty much handle things that pop up in life on my own. I don't know if it's because I am an only child, but asking for help has always been extremely difficult for me. So when Mira went through her first surgery and people came out of the woodwork offering to help us out, I felt so out of my comfort zone. My initial response was to say-we are fine....don't worry about us! Of course we were not fine (really, we were a mess. Actually we still are!) and it was the first time I didn't have a choice about accepting help-we needed it. Once I opened my heart, I was amazed at how kind and selfless people could be. In fact, accepting people's love and support has changed me from the inside out. It has shown me what kind of person I want to be and it has really been a key factor in us surviving such a stressful and traumatic period in our lives. From being fed by meals people sent us to having people come see us when we were at our lowest point-we have been and continue to be overcome with love. I would say letting people in is essential to making it through something like this. I also believe that one of the reasons Mira has fought so hard is because she has seen how many people love her and what is waiting for her once she is outta here!
3.) ALLOW BREAKDOWNS:
How embarrassing it was to have my first breakdown at the hospital. I am a fairly private person and I hate to cry in public (even funerals)...let's just say I am usually private with my emotions. Most of that goes out the window when you're living at the hospital where your daughter is fighting for her life. Exhaustion, emotions and high levels of stress conspire to make you a babbling mess of anger, tears and explosions. Real outbursts are not like the scene in Terms of Endearment where Shirley MacLaine runs around shouting about pain meds for her daughter. My first out burst at the hospital was after weeks of stuffing down the pain and frustration I felt from watching Mira suffer. It was raw, snotty, red faced, visceral and so very needed. I would recommend being aware of that mounting buildup that always signals a good breakdown is impending and once it does come I would advise letting it wash over you without any guilt, shame or apologies.
4.) DO WHAT YOU CAN:
This will differ with each person, and it changed almost weekly for us. If I could explain it another way, I would say that it helped for me to try and take control of at least something in an environment where I couldn't do much for my daughter. In the beginning, simply pumping breast milk for Mira was a way to feel like I was helping. At that point we couldn't feed, change or even comfort Mira and I felt do darn useless. Pumping made me feel like someone's mom and like i was helping. Later on I learned that researching and networking was a way I could feel a part of Mira's care. I found questions I wanted answers to and also discovered I liked not feeling so blindsided when new things popped up. It's true, sometimes I felt overwhelmed by the things I read about and hated thinking about what Mira MAY have to endure, but i felt better knowing I would be ready to ask the right questions and face what needed to be done.
5.) TAKE EACH DAY AS IT COMES
This is so overused and cliched, but maybe that is because most of us can pretend there is another way to live. Thinking any of us knows what's coming our way or trying to control our fates is a waste if energy. Yet, there are many times I've tried to imagine the horrible things that Mira might have to endure in her lifetime or I would feel overcome with the fear of losing her. Each time these feelings got the best of me, I would try to bring myself back to that moment, to the very second I was living in. No, Mira was not at this moment facing a transplant, no she was not on ECMO...of course, those are always possibilities, but so are a million other things. Mostly, the moments I am in with her now consist of comforting her, getting her to smile, singing, leaning in to inhale her sweet milky smell...it is a constant struggle to stay there and only there, but one of the blessings we have encountered on this journey is not having an option in thinking any other way.
I realize I have more experience with hospital coping than I ever wanted to have, but I am far from being an expert. In fact, I would love to hear what other people might add to this list. If you have had a child in the hospital, what helped you get through it? Having a baby or child need hospital care for even a few days is out of this world difficult....
So instead of baking today, I brought a cupcake in. And instead of singing "Maria" from West Side Story, Mira and I are rockin out to music from her little handheld musical toy. If I take my own advice, if I stay in the moment, it's a pretty perfect day.
There are certain days I spend at the hospital where I really struggle with overwhelming waves of GET ME OUTTA HERE! Most days I breathe my way through this very primal feeling urge, but other days I admit to letting my fantasies of Mira and the adventures we could be having on the "outside" run wild.....what kind of things would we be doing today if we could escape? Would we visit the inside exhibits at the zoo? Could we bundle up and take a walk with Pow through the misty forest at county grounds? Or would we go swimming in the warm pool at our health club? Any, heck ALL of those sound nice, but I think if given the choice, we would stay at home-singing and talking and baking those cookies until it was nap time.
I wish the hospital experience got easier. It really hasn't for me. And we KEEP. LIVING. HERE. Almost 7 months now. From the time I could create coherent thoughts in my head, I started a mental list of what's been keeping us alive while we are residents of 3 West. Although it goes without saying, I hope everyone who reads this never has to contemplate life in the hospital with their baby... For those who do, I am sure you'll create your own list...this stuff is so unique to every person.
1.) FIND THE BEST NURSES YOU CAN:
I am so glad that in the beginning I didn't know finding the right nurse(s) was so so crucial to your stay and to your baby's well being. I think If I had, I would have made all of are unit's nurses line up and interviewed them one by one. Having a primary nurse who not only is your child's advocate but who also fits in with your family is tricky. As chance would have it, the three best nurses-magically-found our way into our lives. In fact, I know it wasn't chance, it was the hand of fate and I am grateful for them each and every day. They not only make us feel like we are at home, they do so much more: They make John and I go out in dates when we need a break. They ask the doctors tough questions you didn't even know you should ask. They have taught us how to change a diaper, give a sponge bath, calm a crying baby, take a temp, put that crying baby to sleep.... And mich much more. They have taught us the hospital politics-when to push and when not to. WHO to push and who not to. They've comforted Mira when we couldn't be there. They do the tough job of watching Mira cry when they have to give her shots. Our nurses calm us down when we have outbursts and then they assure us we are doing our best. Nurses are what keep you going and if you're lucky they become part of your family.
2.) REACH OUT:
My M.O. has been to pretty much handle things that pop up in life on my own. I don't know if it's because I am an only child, but asking for help has always been extremely difficult for me. So when Mira went through her first surgery and people came out of the woodwork offering to help us out, I felt so out of my comfort zone. My initial response was to say-we are fine....don't worry about us! Of course we were not fine (really, we were a mess. Actually we still are!) and it was the first time I didn't have a choice about accepting help-we needed it. Once I opened my heart, I was amazed at how kind and selfless people could be. In fact, accepting people's love and support has changed me from the inside out. It has shown me what kind of person I want to be and it has really been a key factor in us surviving such a stressful and traumatic period in our lives. From being fed by meals people sent us to having people come see us when we were at our lowest point-we have been and continue to be overcome with love. I would say letting people in is essential to making it through something like this. I also believe that one of the reasons Mira has fought so hard is because she has seen how many people love her and what is waiting for her once she is outta here!
3.) ALLOW BREAKDOWNS:
How embarrassing it was to have my first breakdown at the hospital. I am a fairly private person and I hate to cry in public (even funerals)...let's just say I am usually private with my emotions. Most of that goes out the window when you're living at the hospital where your daughter is fighting for her life. Exhaustion, emotions and high levels of stress conspire to make you a babbling mess of anger, tears and explosions. Real outbursts are not like the scene in Terms of Endearment where Shirley MacLaine runs around shouting about pain meds for her daughter. My first out burst at the hospital was after weeks of stuffing down the pain and frustration I felt from watching Mira suffer. It was raw, snotty, red faced, visceral and so very needed. I would recommend being aware of that mounting buildup that always signals a good breakdown is impending and once it does come I would advise letting it wash over you without any guilt, shame or apologies.
4.) DO WHAT YOU CAN:
This will differ with each person, and it changed almost weekly for us. If I could explain it another way, I would say that it helped for me to try and take control of at least something in an environment where I couldn't do much for my daughter. In the beginning, simply pumping breast milk for Mira was a way to feel like I was helping. At that point we couldn't feed, change or even comfort Mira and I felt do darn useless. Pumping made me feel like someone's mom and like i was helping. Later on I learned that researching and networking was a way I could feel a part of Mira's care. I found questions I wanted answers to and also discovered I liked not feeling so blindsided when new things popped up. It's true, sometimes I felt overwhelmed by the things I read about and hated thinking about what Mira MAY have to endure, but i felt better knowing I would be ready to ask the right questions and face what needed to be done.
5.) TAKE EACH DAY AS IT COMES
This is so overused and cliched, but maybe that is because most of us can pretend there is another way to live. Thinking any of us knows what's coming our way or trying to control our fates is a waste if energy. Yet, there are many times I've tried to imagine the horrible things that Mira might have to endure in her lifetime or I would feel overcome with the fear of losing her. Each time these feelings got the best of me, I would try to bring myself back to that moment, to the very second I was living in. No, Mira was not at this moment facing a transplant, no she was not on ECMO...of course, those are always possibilities, but so are a million other things. Mostly, the moments I am in with her now consist of comforting her, getting her to smile, singing, leaning in to inhale her sweet milky smell...it is a constant struggle to stay there and only there, but one of the blessings we have encountered on this journey is not having an option in thinking any other way.
I realize I have more experience with hospital coping than I ever wanted to have, but I am far from being an expert. In fact, I would love to hear what other people might add to this list. If you have had a child in the hospital, what helped you get through it? Having a baby or child need hospital care for even a few days is out of this world difficult....
So instead of baking today, I brought a cupcake in. And instead of singing "Maria" from West Side Story, Mira and I are rockin out to music from her little handheld musical toy. If I take my own advice, if I stay in the moment, it's a pretty perfect day.
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