365 days

365 days. 1 full year. We have had Logan in our lives. It hasn't been easy. Nobody could promise us that he'd still be here. There were some nights that I was afraid to let him fall asleep, fearing that he wouldn't wake up. Other nights, I cried myself to sleep due to the uncertainty of his future. This was a hard year.

Here he is. 1 year old. So amazingly perfect, yet so devastatingly broken. He's my healthy sick kid. Which, is a different kind of hard. Not to compare it to the other families we have had the pleasure of knowing. We could never discredit their hardship, it is real, and it is raw. We live in constant uncertainty. "He looks so healthy!". We hear it all the time. It almost gives us a sense of false hope. As if nothing could go wrong, because "he looks so healthy". Sometimes I feel as if because he "looks" so healthy, his health isn't taken as seriously as it should be. When his 02 has dropped, but he still maintains a decent skin pigment, it gets overlooked. He was pink for the majority of the first year of his life. He was blessed with his father's olive skin tone. I remember the first time I saw him turn blue. The first time that it really punched me in the gut that he is sick, and he will always be sick. The first time I was asked if he had something blue to eat, and I had to explain that he didn't but he has poor circulation (which is much easier and quicker to say than to get into the details). That was a comment we got a lot. I held my emotions, but it never gets easier to hear. It was hard to know that my "healthy" kid was starting to show signs of not being so healthy.

 Although our road has been bumpy with an occasional detour, we have had a relatively smooth ride. That terrifies me. I feel as if just around the bend we are going to loose control and veer off the road, onto some uncharted territory.

There is this voice, which I cannot rid myself of. It tells me, more often than I'd like to admit, that our luck is going to run out. When it gets bad, its going to get really bad. Maybe that's my pessimism talking, maybe that's the part of me that knows how life goes. I don't know, but I can't help to think that we aren't always going to have it this "easy".

That voice torments me. It tells me at night, when he is being fussy and inconsolable, when I get frustrated that I need to be patient and hold him close because he may not be here much longer. When I see him laughing at his brother, I hear that voice. "Cherish this moment, it may be the last". I know that may be hard for some of you to comprehend, or maybe you think I am being dramatic, but this is my reality.  He comes with no guarantees. Every time we get to enjoy a milestone that he accomplishes, or see him play with his brother and my heart is about to burst, I remember that he, even though he doesn't look it, is very fragile. Every day I have with him, I remind myself that we are not promised any of this.

I don't really know what I am trying to say, or where this blog post is going. Maybe it's just to let everyone know that this is scary. We may look like we have it all together, and that it isn't hard, but thats not true. We have no idea what we are doing. We don't know how to take care of a medically complex child whom looks like the picture of health. We are just winging it and hoping for the best.

I wish every single day and night that Logan didn't have this disease. I wish that I could give him my heart and know that he'd never have to undergo another surgery again. A surgery that will never actually fix him, but only get him through to the next surgery.  I then realize that wishing away his ailment, means wishing him away. That thought is unbearable. I cannot imagine not having him, or who he would be if he didn't have this scar on his chest. If keeping him means keeping his unpredictable future, then so be it. Maybe that's selfish.

We have learned a lot this year, a lot about ourselves, our marriage, our family and our priorities. Our ordinary world was turned upside down 365 days ago, but we are figuring it out. We don't take anything for granted anymore. We have learned what is important to us, and what we value most. We have learned to love deeper than I have ever imagined. We have a long road ahead of us, and it is scary to not know what our future holds. We may not look it, and we will never ever admit it, but we are scared. Jake is my rock, and I am his, and because of that, we stay strong for each other, when in reality we both just want to break down some days.

We both appreciate beyond words all of the love and support our friends, families and even strangers have given us in regards to Logan. It really helps keep our heads above water, knowing we have someone to turn to when things get rough. So, thank you. Thank you for always being there when we needed to talk. Thank you for understanding when we didn't want to talk. Thank you for the hugs, the positivity, the prayers, the thoughts. Just knowing how many people were thinking and praying for Logan during his last surgery was overwhelming and just absolutely incredible. Again, thank you. As always, a huge thank you to my husband. I couldn't do any of this without you by my side. I could write a book about how much I appreciate you, but I hope that I show you everyday the love I have for you and how thankful I am for what you have given us. You are an incredible father. I love you so much.

In closing, I can only wish for another hundred years for Logan, but for now, we will take it one year at a time. His next year of life will be just as hard if not harder than his last. We are staying strong, we are holding him tight, and we are enjoying every moment we can as a family. Our perfect family.