January 21, 2015 was a normal day just like any other. I got Jax dressed to head out the door for his genetics appointment. He had his shunt placed about a week prior and while in the hospital he had a lot of tests done. They assumed he had some kind of lysosomal storage disease but were unsure of which one. This appointment was to determine that. I did my research and I was prepared for them to tell Mark and I that we would have to give Jaxon medication or something of the sort to help replace what Jax didn't have.
The nurse led us to the exam room and they weighed Jax and then told us "the doctor will be right in". Two minutes later the genetics doctor walks in. She sits down and begins to explain to my husband and I that some times people can have "bad" genes. She said that alone the genes won't do much but when the same gene matches up it can create a genetic disease. The disease that Jax had was called Niemann-Pick and she was leaning more towards type A based on all his symptoms.
My mind started processing this and I started asking questions,
"What do we do for him, like does he need a shot or medicine?" and the doctor replied,
"unfortunately because this disease is so rare, there is no known cure."
When she said cure my mind started to race. No cure? So what is going to happen? She told us that because Jaxons lysosomes down break down everything they need to that eventually his organs would swell and become to large for his body. Then without thinking I asked, "Is he going to die?" and what she said next shocked me. She said that basically it is was a waiting game for him to pass away.
I felt like the wind was knocked out of me, I literally felt my heart shatter into a million pieces inside my chest and the pieces where cutting my insides. I felt like I was going to throw up, cry and scream all in the same breath. I was looking down at my son staring up at me, with those big blue innocent eyes. Eyes that looked at me with such love. And I was being told he was going to die. There was nothing I could do to make it better.
A peace came over me that I had never felt before. I can only explain it in 3 words, The Holy Spirit. I had never felt it like that before. At the minute my whole world was crashing around me I was calm and collected in my thoughts. One of the people I loved most in this world was going to one day lay limp and lifeless in my arms. The agony is unbearable. No mother should have to feel such quiet and intense pain like that, ever.
I haven't stopped being sad, not one day. I have moments of happiness and joy. I have belly laughs and good times but there is this underlying sadness that will never leave me. It will never go away until I am in heaven one day.
I hate that there is this small "club" I am now apart of. This circle of mommies who have sick children. Who will never get to see them graduate from high school, who will never get to dance with on their wedding day or kiss their scraped knee when they fall from their bike. I will miss SO much with my son. There are so many milestones I will not get to capture. But one day, I will get to make up for all the things I will miss here in the physical world.
For now I will do as many things with my son as I can. I will pray for healing of his body everyday! I will kiss him more times than he could ever need. I will hold him and rock him and co-sleep. I will stare and take a bizzilion videos and pictures. I will show him what faith looks like and I will tell him all about his heavenly father. I will do everything I can with him so that I regret nothing.
I am not writing this post so that anyone feels bad for me or says "I'm so sorry" because honestly nothing can make this ok. It isn't fair and I don't understand any of this. I cry out to God and ask him why? I hope that one day my son no longer has this disease. I hope I never have to watch his smile fade and his body change. I so desperately hope my baby is the miracle. I cling to that hope because I believe my God can preform a miracle. He has before.
I have this reoccurring dream of my husband and I and three kids. Holding hands at a playground, spinning in a circle. Our heads are thrown back laughing at something that is so funny. It looks like a tv commercial. So happy and free. I know one of those kids is Jax by his smile, but the other two are so foreign to me but so familiar all at the same time. And then I wake up just when I am about to remember who they are. I lie there with tear stained cheeks wondering, is this our future in a couple years or is this heaven? I guess I might never know. But boy, I so pray that dream comes true because even though I was dreaming it felt so real and I haven't felt like the real "me" since January 21, 2015.
<3 Tori
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