Ramblings

Ramblings

Written Apr 24, 2012 3:32pm by Amber Gannon Medina

I sometimes think having a sick child gives parents an insight into a pure uncomplicated view of life. That doesn't really make sense to me to write it that way, but I am starting to feel like the undeniable parts of life we push against and deny, become facts of life you just can't fight when your baby is sick.

There are snapshots of life that I see clearly now that I would not have seen before having Mira.Today I came in to the hospital only to be greeted with a huge yellow truck that was furious I had passed him while he was parked and blocking the road. He followed me down the road and trough the parking ramp blasting his horn with indignation. Instead of my usual screw you response, I almost immediately felt sad and empathetic. How many times in the past six months have I wanted to do that same thing after hearing a bad update on Mira or when I was tired of yet another day at the hospital? A lot. Numerous times. I felt so badly that this person was most likely experiencing a difficult moment as well.

Seeing all the families come in and out if our unit. Seeing them experience heartache and joy and at the same time to also BE one of those families...well, it gives you untold amounts of hard won empathy and insight. I no longer judge parenting decisions of others. I no longer feel pity for kids who are "different". I let little problems roll right off my back. I feel badly for people who act out against little Toyota Camrys.....there really isn't room or energy to do it any other way.

Part of this new perspective also brings an insane amount of patience with it. If I had to give my opinion on the one trait families of sick kids must nurture, it is patience. My natural inclination has always been to hear bad news and then think-of course! Of course this is happening to me. Everything bad always happens to ME and this is how it's ALWAYS going to be! I actually look back at how I used to think and want to laugh. How short sighted and immature it was.

After spending 6+ months in a cardiac ICU, not only have I seen firsthand that this kind of thinking isn't true, I have also seen how quickly bad news turns to good. And good news back to bad. Nothing is ever the way it's always going to be-good times never last and neither do bad times. I might have found that disturbing before this but have recently found it immensely comforting. It has enabled me to be flexible and to get through the bad times (like these past three weeks of Mira doing poorly) by knowing things would change. It also helps me not throw my hands up in despair when she's been doing great and suddenly has a set back.

All of us in this world suffer heartache in one form or another. Some experience more than their fair share and others may seem to the outside world to glide on by-but I truly believe we receive the troubles we are meant to experience. I look at other families with sick kids and think-I couldn't handle that! But of course I could, I am just not supposed to. I am supposed to handle Mira's journey and I feel it's something that I've been waiting to do my whole life, that somewhere in the depths of me there was a little kernel waiting to burst with all the knowledge and strength I need to get through this. I am not saying this because I think I am special or different-all of this have our kernel in us. I would say don't shy away from the things in life that require those little kernels to burst. I am starting to see the rewards we gain from facing these hurdles are great.

I hope I don't sound pretentious here. It's just sometimes-when I look around the hard parts or have people helping me so I am not in burnout-I feel so blessed to be facing this journey. From the way it's brought so many wonderful giving people into my life to how it's taught me to focus on the important parts and leave the petty superficial things aside-I have moments where if given a choice I know I wouldn't choose a different life. This feels good to say because there was a time where all I wanted was a normal baby and a normal life and I was consumed by bitterness and anger that I didn't have any of these things....I am glad that those are now just moments of weakness surrounded by joy that I have just what IS.

The patience is crucial to realizing that if you stay in the moment, you have everything you need. The other day Mira was having a really rough afternoon and I was facing what felt like the millionth hour of rocking her while stopped over the bed In a really uncomfortable position. I started wishing I could go home and i found my rocking was turning robotic.....until a thought hit me. I get to ROCK my daughter. I can experience the joy of holding her little head in my hand and seeing her sweet eyes close. I have the privilege of wiping her chubby chin (full of spit up) with love and tenderness. What more do I need than this?

I don't think I would have been able to be this kind of person had I not been forced to go through this. And believe me, I don't want to sound like I am perfect or that I have it all figured out. I am still terrified that Mira might have something more wrong with her heart. I still hate coming to the hospital most days. I get mad at the doctors. I feel exhausted when I think about Mira's uncertain future.....

I am just starting to see that I am SUPPOSED to be feeling all those things and I am meant to feel the joyous parts as well. 

I want to thank you all for reading our posts and for your guest book and facebook messages. You are such a huge part of the joy in this journey. You have come to the hospital when we were ready to drop dead. You told us we could do it! You listened to me complain. You helped take care of our daughter and loved her like she was more than just a job. You've stuck by us, didn't judge us and continue to give us what we need to keep going.

So I will say it again. I would not choose any other life for us. It is full of joy.