Post after post I feel like I have shared our journey. Unfortunately it has never really been the journey I have wanted to share. I keep wanting to post how our lives are getting back to normal, and life is pain free. I dream of a day when this blog is just a place to post happy pics of the kids, and give quick updates on family fun times. And for many, they may have walked away from this blog because the posts are always revealing the next big medical, financial, or life crisis within our fam. It breaks my heart that time after time I find myself writing similar words on this blog....chiari, eds, money, doctors. But one word I keep writing I love...Faith! And quite frankly it is the only word that lets me keep writing this blog.
Today has been a day of complete reflection. A friend took the kiddos to her house for the day. I have rested and contemplated the last few years and the months to come. Most days I shove this info to the back of my mind, I just have no desire to deal with it. I try with all my might to push through the pain and live normal. I think if I ignore it it is bound to get better, go away. All my life I have fought this stupid beast. I have missed out on things because I was sick or hurt. I did not understand why other friends could go away places and I always went only to get sick. By the time I hit college I had lost all hope of being the normal kid who goes away to college. So I told myself living at home through college would save me money. Through the years I have learned how to deal. I have learned triggers such as food, heat, exercise, and smells. This has helped. I know we all have mountains to climb and mine is really no different than thousands of other people. I just have to figure my way over it. Or maybe just my way to live with it.
Tim and I really feel I need a second opinion. So I am seeing Dr Henderson in Maryland on August 27. Thanks to an amazing person, I was able to pay for the visit and a plane ticket. Dr Henderson really is the best in what he does. He is a hero to so many. This does not mean I am not having surgery with Durrani, just that I want to make sure I am taking the right steps. I have moved my surgery to September 24. I can honestly say I am very scared for this. Not the surgery part, the healing part. I am not good at handing my life over to others. I need to feel like everything is done my way. I have certain ways to organize toys, linen closet, and just life. I have to let these things go and embrace rest. I am slowly being forced to do this, as my neck and head make it impossible to do most things now. But my heart keeps screaming, "I can do that!!! I can keep up!!! Just watch me!!!" Thankfully I have had a few friends that have told me to let them do it. They are forceful yet loving and it has allowed me to let them in. And my hubby is very good at telling me to slow down.
I know many of you pray for our fam, and I thank you so very much! I can't tell you how blessed we are to know we have people lifting us up. I would never be surprised of those just walking away because it is too dramatic, too much. Thank you for the prayers....the financial help that keeps us floating just above water....and the endless kind words of encouragement. I do have a few specific prayer requests for those who will pray: Please pray for Brooke. Brooke is having vision episodes. Her eyes are fine, but she is having times when her vision is blurry or just not there. She is sure her eyes are broke. :( I keep trying to explain it is her brain. This is scary for a little one. Please pray she grows to understand what is happening. Also that I can get Brooke in to some specialists for her urinary and bowel problems. They are in cincy but the idea of more trips there scare me! That is really not the most pleasant drive. Please pray for Aidan. He is such a trooper and a huge help to me. But I know he is struggling with headaches. Please help the PT to happen soon (he is on a waiting list), and we find some way to relieve the headaches. Please pray for Chandler. I am so worried after surgery. He is a cuddle bug and will not understand why mama can't hold him, or why he can't jump all over my bed. Please pray for Tim. He is my rock. He has been my biggest supporter, and my greatest comfort. I feel most at peace in his arms. And yet I know this is all tough on him and a huge responsibility. He works so very many hours and is exhausted. I just pray for his health and sanity. I hate asking for prayers for myself, but I am desperate! I feel like I am walking around with a 50 lb bowling ball supported by a small stick that is going to snap at any moment. Every joint has been popping in and out of socket- my hip, knee, and wrists being the worsts. My hearing is really bad, and I am scared it is going to leave and not come back. I am trying to eat super healthy to try and clear up my stomach issues and see if it helps with any other things too. Not an easy task. Thank you for being faithful to our family, for carrying us when we need it. I pray everyday for the blessings that surround our fam and those who bring those blessings about!! I lean into my Faith because with it we can move these mountains.