Day 85

I'm in a weird mood today... Not really depressed, but not myself either. It's one of those days when I can't stop my mind from wandering all over the place, thinking about everything that's happened, and everything that's still to come. I hate these days, because it's so hard to stay positive. It's hard to remember the many blessings we have to be thankful for when it seems like every time we start to get our feet back under us, life comes along and knocks us back over.

He's still having a rough time. He continues to throw up and feel crappy, and we continue to ask questions that have no answers. His oxygen requirements keep going up, his respiratory rate goes up. He's in pain but we can't figure it out. We have no idea what's going on in that poor little body of his, and I feel like I'm at the end of my rapidly fraying rope. I want answers. I need answers. Holden needs to feel like an almost-one-year-old baby should feel, and not lay in bed whimpering and puking all day. His previously perfect body looks like a battlefield, and that doesn't even begin to show what kind of mess is going on inside. Of course, Holden doesn't realize any of this. He continues to amaze. He is truly stronger than I am, in so many ways.

So cross your fingers for him one more time. Cross your fingers that this mystery illness will pass and we can pretend we are normal again. On second thought, forget the fingers. Please kneel on your knees instead. Or maybe do both...

I wonder, will there ever be a day when I don't make myself sick with worry about this baby? I mean a day without exhausting, real, true, valid worries? I feel myself becoming a little too anxious, a little too neurotic. (And I didn't have room for more crazy in my head to begin with.) I am seriously not like this in the real world. I'm fun. I'm spontaneous. I'm someone who appreciates the little things all around me, and is quick to laugh. I'm so not me right now.

I will never be the same and I don't know if I'll ever want to be. I wish sometimes that I could explain our life in here a little bit better, a little more clearly. I feel so disconnected from some things, yet I feel more connected somehow to others. To some of our friends and family. To strangers who have shared similar experiences, who we now call friends. To the doctors and nurses who we now consider part of our extended family. They're who we see and talk to daily. They're the ones who know what we live through and struggle with every single day.

It isn't that I don't have amazing friends and family. It's more that I don't have anyone who just knows. Who knows the tedious repetition of pumping drug after drug into a tiny stomach. Who knows how crappy and heartbreaking it is to hold your baby as he gets sick over and over and over again. Who's lived through weeks of sleepless nights worried about oxygen tubes and feeding tubes and breathing tubes and drainage tubes. Who takes a deep breath every morning while still lying on the couch, trying to muster the courage to look across the room and see if your baby made it through the night. Who knows the isolation of closing off the world- not because you want to, but because you don't have a choice. You know, people who just know.

Yet the people who've traveled this road with us so far are amazing. Truly amazing. I am so very grateful for old friends and new ones, near and far. For those who understand what we're going through and for those who- thankfully- will never have to. We have people all over the world who love us. Add that kind of love to the phone calls, gifts, cards, letters, emails, messages and the prayers- the many, many prayers- it all adds up to overwhelm a girl who usually feels very uncomfortable receiving such kindnesses. I think most of us do. No one likes to be the “charity case.” We’d all prefer to give the help, make the meal, be the genius who comes up with the perfect gift. But sometimes you have to sit back and know that you are loved and cared for, and just say thank you. We know there are angels around us, because so many of you are those angels. We will spend the rest of our lives paying your kindnesses forward. I am humbled. I am grateful. I am in awe. There is so, so much to be thankful for.

We spend our entire lives planning the details of our future (I do, at least), when really it's the experiences we could have never expected, and most definitely would never hope for, that truly end up making us what we are. 

I am full of gratitude for all the blessings that are mine. I am thankful for modern medicine, because it has saved the life of my baby more times than I can count on my fingers. I am thankful that my little boy woke up this morning- It is nothing short of a miracle each and every time he does. I am thankful for the doctors and surgeons who have made it possible for him to be here today. I am thankful for your prayers and concern- I'm certain your prayers have brought untold blessings into our lives. These past few months have been among the best, worst, hardest, most fulfilling, soul searching, growing times of my life. And for that I am thankful.

So please don't be alarmed when I sound down and depressed about my lot in life. Sometimes it's just so hard. It's simply hard. Some people praise us for being strong... I don't think we're strong. I think we're numb from the sheer exhaustion of hoping and praying and wishing- of trying to mend our little boy through the force of our will alone. It is exhausting. It's also worth it. Holden is worth it all.

A nurse was singing the song "Mama said there'd be days like this" earlier this morning, and I've had it stuck my head all day. I'm glad that Mama said there would be days like this- not weeks, months, or years. Days I can take. Days I can handle, one by one. And tomorrow is a new one. Hallelujah.