I have been told a lot lately about how strong I am, how strong Brandon and I are and all. I honestly don’t feel very strong all of the time. There are many, many moments when I’m weak and I’m pessimistic and I feel sorry for myself. I think how I react to those feelings is maybe what people refer to in that compliment stated above.

My parents raised me to believe that I could do anything I wanted, be anything I wanted to be, be the best at whatever I did and to always have a positive attitude. We didn’t grow up with everything materialistically speaking but I did grow up with parents that would do anything for me and never seemed to let any obstacle stop them from what they wanted. I watched two people love one another so deeply and lift each other up in any moment of hardship. I had the most incredible parents and cheerleaders at that. I may have not been the best at many things I did, but I sure believed they thought I was the best and in turn I felt very confident in myself. I believe all of that is what laid the groundwork for how I deal with life’s obstacles as an adult.

Through our journey in parenthood we haven’t really had an easy path. We have had to bury our first born, which was incredibly hard, raise a typical little wild boy following the loss of a baby, and now work through everything with Demi while balancing our 3 year old son, Beau and meeting his needs. We try hard not to be helicopter parents with Beau and not let our minds get caught up in the fears that we both have constantly in regards to him. I know it’s typical for every parent to be fearful of things with their children but when you have already felt the pain of loss of your own flesh and blood that you created it kind of feels a bit more possible. For instance, i think how I have already been that statistic so to speak so I’m not invincible and things out of my control can absolutely happen.

One of the things I have felt through working for Demi’s diagnosis is “well why this now? I have already taken my licks in this department. Why must we go through this?” – it’s strange really… in everything I have been through.. I have never questioned “why” like I have this time. I honestly think it’s because this time I’m not just getting myself through a challenge but having to carry a beautiful child through it all. I think I’m hurting in a different way and scared if I will be enough for her in a sense. – this is just the real, raw things that run through my mind but let me get to what I think makes me, me.

When all of that enters my mind, I literally start pushing it out immediately. There is no room for any of that crap in my head. God chose us for a reason, a reason unknown, but one I so genuinely believe in. I know there are wonderful things on the other side of these feelings. I know that my daughter will be amazing and she will provide more for me than I could ever have imagined. I still firmly believe her story is not defined by a diagnosis or what a doctor says is typical of children with MRI results like hers. God is in control here and as wonderful as medicine is and we are absolutely perusing all options for Demi, God has the last word here.

People have shared stories with me about how their child or family member has beaten all odds medically and I just say “why” again.. but this time “why can’t that be Demi?” And that’s because it absolutely can and I believe it will! Every single story had inspired me and given me even more reason to believe that Demi will beat the odds and will be everything she dreams of being.

Tomorrow is a big day for us and we will need some serious strength and to be so strong for Demi. They will do a spinal tap on her without anesthesia. For all of you women that have had epidurals, its much like that. She will be uncomfortable in the position they will have her in and in pain for a few minutes and that’s hard for me to know and sit and think about. I just keep telling myself it’s all just momentary and necessary to give her the best care we can. Please pray for us tomorrow as we walk through one more step and hopefully the last invasive one.