In the beginning we were living second to second..willing Xavier to just hang on. When we realized Xavier was going to live we started focusing on making it through the hours. The time came when we could plan out the day and make 24 hour goals. Now that we are on the floor and out of the ICU we are looking at weeks, that's right, we are planning out each week now!
Don't get me wrong we still don't know how each day will be. Some days Xavier is smiling, giggling, calm and able to participate in therapy and some days (like today) he is depressed, in pain, stressed out and spends the day crying. It's really hard to watch and feels like we are taking leaps backward. We are still dealing with major belly issues (cramping, bloating, gas, vomiting) and from time to time weird rhythms. However from a cardiovascular standpoint he looks good. His liver is "hard to find" and thats the way its suppose to be. His most recent echo has been described as robust! But we still have a long way to go before rehab. He needs to come off all his IV meds, and we need to get his belly issues and feeding intolerance under control. He will go on Tuesday for a G tube, a feeding tube that goes directly into the belly s we can get that feeding tube out of his throat.
Poor little guy has been through so much and still has such a battle ahead of him. And it just breaks me to not be able to help him. I sit with him during therapy and will him under my breath to move, just move his hand, just pick up his head, just reach out and take the toy....please! It's beyond exhausting just watching him work so hard. Sitting in this hospital hour after hour just sucks the life out of you. Only sleeping a few hour a night takes its toll. I have bags under my eyes, my hair is always a mess, my skin is dry, I'm going gray and I'm wearing a hole in my sweatpants.
I can't describe the ache I feel when I have to say goodbye to Elliott, when my mom calls to tell me something new she is doing. My sweet girl is growing up, turning into her own person and I'm missing it. But on the days I leave Xavier with Nate to go home to her, leaving him is torture. If only my heart were the broken one, I could leave a piece with both of them.
These last two months have been like nothing I have ever experienced. It's like being in an eternal winter, just begging to feel the warmth of the sun again. Longing to be warm, to find a reason to smile. But this journey has also changed me for the better. Helped me to see the good in people, brought new and wonderful people into my life, made friendships stronger and given us a testimonial to the miracles of God and the blessings of life. It has opened up opportunities for me from an advocate perspective. And seeing the indescribable strength and fight that is in Xavier is breathtaking.
The days are still long and hard. Some days I smile and some days I sit here and cry. Some days I chat and laugh with the nurses and some days I am questioning and testing every decision. But everyday, every minute I am thankful, grateful, blessed....and closer to feeling the warmth of the sun.
My sleepy boy
Laughing at mommy
My sweet girl visiting her big brother in the hospital
