Continued (The birth of the Manie Foundation)

After The doctor explained that AVM meant Manie's blood was going into his lungs, but not going into his airsacs to pick up oxygen, it was clear this was serious. This was something Manie was born with. After 12 years they were finally discovering it. I couldn't believe what I was hearing. All the times I had complained Manie was having problems it was brushed aside and I was told "He is fine he is just a kid who has heart issues."

Then the words came that shocked me. "Wisconsin didn't tell you about this when you were there a year ago?" "No" I said confused at what the doctor was asking. Every two years Manie and I make a trip to Wisconsin hospital and our last appointment had been in March of 2015. It was now the end of January 2016, just a month and a half shy of being a year. "All the symptoms you have been complaining about for the last twelve years is because of this birth defect" the doctor said. They found the AVM in Manie's lungs in a CT scan they had done in Wisconsin. I was in shock no one had told me.

The doctor explained Manie will have to have surgery. The craziness I usually feel when telling the doctor there is something else wrong with Manie was replaced by fear and rage. Not wanting Manie to see my new found emotions I said to the doctor "At least we know now". Manie and I left and as we drove away I asked him his thoughts about what the doctor said. "I am the same as I always have been. I don't feel any different."

Manie did something I wish I could do. He didn't let the words of another person change how he felt. He was born this way and has lived this way for the last 12 years. The doctor's new information didn't change who Manie was it just confirmed how he felt. Manie and I already knew there was something else wrong. The only thing that had changed was not we has an answer and we know why.

Manie had taught me yet another lesson. Now it was my turn to teach him something too. "Everything happens for a reason Manie. We can either wait and see what those reasons will be or we can make our own reasons." Manie started to pay attention as I talked. I looked in my rear view mirror at him as he looked up from his phone our eyes caught each other for just a moment. At this point I wasn't even quite sure where I was going with this, but the words started to flow from my mouth without effort.

The words coming from my mouth came from a place deep within my heart. It was a place I didn't want to return too, but had no choice. Great anxiety flooded every fiber of my being. The word "surgery" makes every muscle in my body tense up. I suddenly get whisked to a time when Manie was born and life was so uncertain and terrifying. Being in that place in my heart which I had carefully locked away, but now it was unlocked and seeping into my reality again, I explained to Manie how happy I was that he was not a tiny little baby anymore. I explained to him how different it was for us then. We didn't have money, or family who cared. We were all alone with not much help. We were new to everything that was going on even being in the hospital was scary. I told Manie thinking of all this made me so grateful for him and for making it through those tough times.

I told Manie "After going through all that made me realize that there is a need." Families of babies born with birth defects shouldn't have to worry about money when they have so much else to worry about in those precious first days and weeks. Not everyone has family that will care enough to throw a benefit or help them out financially. Manie said "Mom we should help them." I explained to Manie I had always wanted to start a non-profit to help families. He thought it was an amazing idea.

I told Manie I would help get it started, but he would have to be here to take care of it. You see I figure the more reasons you give someone to stick around and the more you make life worth living the more that person will fight to live when they need to. Manie has the biggest heart I have ever seen. I have never seen a person who cares so much about other peoples feelings. He hates to see people suffer. This is his calling and I am doing my best to make it happen. To be cont...