Truth is.....

Since the beginning of our journey with Waylon I have done well to hold in my feelings for the most part. 

I have been strong in the face of his struggles while in the hospital. I wasnt the mom you seen breaking down on the elevator, because I sucked those tears back in, took a deep breath and held my head high. 

Each time the doctors came in to tell me that my son was yet again struggling with something, a medication wasnt working, he had a failed attempt of coming off the ventilator, fluid build up, collapsed lung. I wore my mask of medical proffessional/warrior mom and said "This is what we can do next" "I seen him heading down that path". Doctors were in awe with my togetherness and were at ease with coming to me when something else was going on because I didn't break down. 

The few times I did break down I was in the arms of my loving husband, and it was some of the toughest times. Like the elevator doors closing as I seen my baby boy being walked down the hallway to the OR, seeing my son on life support and then weeks later being told that there was nothing else they could do for my son besides putting him back on it. 

I was stronger than I ever thought I could be, was it my mothering instincts, my preparedness? I couldn't tell you, but when I was in that hospital I was in an entire different mode.

Since being home, I am still very much in that mode, but I can let go, I can let tears flow (still mostly when no one is looking). Looking at my amazing little warrior gets to me everytime, there are so many things we never knew if he would even be able to do, or even be here to do. 

In light of the past few months and hearing the words "Fontan soon" I have been on edge. I cant look at him throughout the day without tears falling. Especially since we got the call yesterday with THE DATE, which is only a month away. I have been preparing on things since last November. Calling social workers in Michigan to ask about insurance, what will be covered, what we can get help with, what we need to pay out of pocket. How will things pan out the days before, will he have a cath the day before surgery, a month before? Traveling from states away I wanted us to have it as together as we could this time. Last time I had to gather necessities in a small bag to fly in a helicopter and forgot a TON. 

Nothing could prepare me for the rush of emotions when I looked at my phone and seen "Michigan". I knew it was any day that we would be receiving the call about paperwork received, or the surgery date. But when I answered that phone and the surgeons assistant asks if I "have time to discuss Waylons surgery date, and pick a date?" I wanted to break down, and I wanted to throw up. It became REAL! 

All of the "what-if's" run through my head like a race track. I kept reminding myself to breath, just breath. 

From my room I could hear Anthony and McKayla playing with their baby brother and his therapist, laughing, running. And it hit me again like it does everyday, we will be split up again. Our happy lil year home together has come to an end and we have to seperate ways again. I thought how all of this has affected them, and how strong they have had to be.

Truth is: I dont want to be strong sometimes. I want to break down, I want to scream, I want to be weak

Truth is: I cant be. I have no choice BUT to be strong because Waylon has to be, and I chose for him to have to fight, so... SO DO I. 

Truth is:I hate all of this, it isn't fair that our family has to go through this, that our kids have to go through this. 

Truth is: I shouldn't have to be worrying about any of this. I should be worrying about what my 19 month old baby is getting into, what new words he is saying, and cherishing the days he is at home instead of school. NOT cherishing the days because I dont know how long he will be here with us.

Truth is: I wonder how I will deal if something ever happens to him. And it breaks my heart to even think about it. 

Truth is: I think of him dying alot, especially here lately. I have nightmares of it. I see a picture of a grave with a lil boy sitting next to it "playing" with his lil brother, and INSTANTLY think of how that could be something I could do for Waylon and his siblings. Then my heart sinks and I think how sad that is. I see little suits and instead of thinking for an outfit for Easter or Christmas I think how handsome my baby boy would look in that and it would be a perfect suit for his burial. 

Truth is: I know how crazy ALOT of this sounds. But it is real, it is my true emotions, and what its like to be the mother of a critical child.

Truth is: Even though I have these morbid thoughts, I dont let them overshadow the happiness of today with him here with us. And I dont miss a chance to make a memory because I am taking to much time feeling sorry for our situation. We have a normal schedule we follow daily, with random moments of crazy living room dancing with ALL 3 of my babies. We go out and see the world, within limitations to keep Waylons health safe. 

Truth is: My relationship with my husband is 10x stronger than it was before all of this. 

Truth is: My faith is not the same, my christian belief is almost non-existant. But that doesnt mean I am disrespectful to those who believe, or that I am offended when someone says "I will be praying for you" because they are thinking of my family none the less and that is huge for us.

Truth is: I get jealous and ANGRY when mothers smoke, drink and do drugs during pregnancy have healthy kids, and I did everything possible to be healthy in all of my pregnancy. But I realize those moms would never be able to walk a mile in my shoes, and they wouldnt be able to deal with a child in Waylons condition. 

Truth is: I dont take nearly the amount of crap I used to take from people. I am much more "bitchy" as some would say. But its a defense mechanism to care for taking care of  my family and myself. 

Truth is I am NOT alone. I have an amazing husband, family, and awesome heart moms who have my back NO matter what. They are not afraid to come to my defense if its needed, or to fight for my childs best interest if a hospital isnt doing what it needs to (have seen it happen (:  )

Truth is: I am scared. And that is okay.