Wednesday, January 28, 2015

I Choose Joy in Pain

Hello loves!
As most of you know my son Jax was diagnosed with a very rare genetic disease called Niemann-Pick. If you don't know what that is (please don't google, a lot of it is awful and worst case scenario) it is a genetic disease that causes Jax's lysosomes to not be able to break down all the things it needs to. So what happens is that all his organs will eventually swell and become to big for his body. Doctors can't really tell us how long we will have with him but honestly I wouldn't want to know. 
God has a plan for my son, I feel like I have said that SO much since we found out but its true. I know that my Jesus is the same Jesus that he was before we found out and he is the same now. I don't know why these things happen or why this happened to my baby but I don't want to worry about that. 
I have decided to choose joy and to only focus on the positive. I want to spend all my time taking pictures and writing things down and hugging and smothering him with kisses. I want to make memories. I want Jax to always remember how Mark and I made everyday the best possible day. The love I have for my son is something I can't explain. I never imagined in a million years I would be going through something so devastating. 
Honestly, some days my heart feels like it weighs so much, its so heavy. I don't want to sugar coat anything because I try to be honest on my blog. Some days I wake up and I forget whats happening and then I look over at Jax in his bassinet and  I remember and I just cry. I know eventually things will start to feel normal again. But at night when everyone else is asleep I look at my two boys and I thank God because I am so lucky to have this family with me every night. 
Some people ask me how I can be so positive and strong in this situation and honestly I don't know. All I can say is that God has his hands on me through this all. Since the moment we found out I knew I had two choices; I could wallow in self pity or I could live every day to the fullest and show my son that our God is greater than our circumstances. 

"Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you. ... O great and powerful God, whose name is Lord Almighty, great are your purposes and mighty are your deeds." 
{Jeremiah 32:17-19}

I always told my husband that I don't want my children to be scared of death. Heaven is our reward not a consequence. But as a mom you can't help but think of the worst in situations like these but I am trying my best to be positive. I am going to have really ugly days + I won't always be positive and I know thats ok. I refuse to put my feelings or my relationships on the back burner. My son deserves me to be open and honest and that is my goal through all this. To really be honest with myself even when its messy + hard. 

Thank you to all of you who prayed for my son. Who texted and called and emailed. I could never explain to you what that means to my family and I. I have read and re-read every things you have written and when I need a little smile or happy cry I read them again. I truly wish I could hug all of you and have a cup of coffee with you and tell you how much you mean to us. 

Jax is such a love and is always smiling and happy. He really is an awesome baby and I am blessed. Even though he has this disease he doesn't have symptoms yet and they say that usually they won't show up until he is around 12 months, the only symptoms he has is the hydrocephalus {which is controlled by the shunt he has in} and the enlarged liver {which as far as we know at this point isn't hindering him or causing any pain}. Just so you guys aren't thinking he's in a lot of pain over here. He's cooing up a storm right now and chewing on his hands just looking at me while I type this. 

Thank you all again from the bottom of my heart.
xoxo tori. 

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