An open ended letter.

On my personal blog I really try not to post the sad stuff. The stuff that little man has his own blog for. But after a long and trying month, I needed to get this down somewhere not in the middle of medical updates. This is my open ended letter to whomever.


My son is my life, which should be evident by the fact that I have 2 blogs about him. Today is his 11th month birthday. We are one month away from the year mark, and we have almost made it.

It's amazing to me, to see God's hand in all of this. Since 5 months ago we weren't sure he would even be here, let alone make it to 1 year. But I thank God everyday. For my beautiful son, for giving me another chance to spend another day with him.

I know they are limited. Not because we don't know how long we have, but because of his condition. I've cried many days into my pillows about this.

How morbid is it to be considering a funeral fund for your baby? That his death is a real possibility. In the public eye I am the strong mother. The one who goes to the ends of the world for her child. I've lost friends, and gained a few new ones.

I've tried explaining, but in the end, it was easier to remain silent and let them think I was a horrible person then to sit down and explain that my son is not getting any better.

Right now we are faced with the fact that Jacob might never crawl, walk, talk or go to school. If he gets slightly sick, his chances of catching something horrible increase exponentially, and so does that possibly of death.

Death will always be stalking us. This is my new reality. I still laugh and joke, pretending life is ok. While this future eats away at my heart, and lungs. It hurts to breathe, and I swear when Jacob chokes on even his own saliva my heart skips several beats.

My son is not alright, or fine, or having a good day. It's all apart of the facade that I have created. It's not a bold faced lie, just a cover up lie. I've learned the hard way. Most people would rather hear a lie then be faced with such a horrible truth.

Which takes me back full circle. People like things in neat little packages and red ribbon tied on top. Our story is messy. It always will be.

We are busy. I have a special needs child, and a preschooler. Its a full time and a half job. We drive hours in hopes of getting second opinions and help. More tests ran, more answers. More diagnosis.

While a few of his diagnosis have changed names, the end result has not. That possibly within ten years, we will no longer be a family of four.

So what I hope to accomplish with this letter, which will need to be added to over the course of the years is this; give your children an extra hug tonight, and thank God for the small accomplishments.

That although it might annoy you, cut into your whatever time, pay attention to the little things, because you could have it worst, and those little things, the smile, the first word might never come. You could be raising a 3, 10, 15 year old stuck in a 5 month old babies mental state.

Which, you might never know why. We certainly don't.