Loving someone who is RARE is a precious honor. I am thankful God has given me the privilege to love 2 special RARE people in this life. This RARE condition is a Chromosome and Neurological Disorder called L1 Syndrome.
Today has been another “ok” day. Brent is so ready to get back in the swing of things with going to school and doing his routine. He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager! I am ready to get past all the medical things I have been going through also. There are so many people in the world hurting tonight.. Some have a disease that is taking control over their bodies and they have no control over it and are struggling with answers as to why this is all happening. Some are in the hospital fighting for their life due to something they never thought would happen to them. Others are addicted to drugs and alcohol and some choose to stay that way and others are wanting a better life for themselves. No matter the circumstance of the battle you are in, God has a plan.
I have learned that there is no amount of struggle or hardship that God can’t control. If you are a believer then you should never doubt. I seen on Facebook the other day that a friend had posted about Fervent Prayer. I am wanting to do this and learn exactly what Fervent Prayer is. I want to be a better mom to my son. I want to be a better wife for my husband. I want to be a better friend…. I want to be a God-fearing Christian woman who is Christ-like. God said he would supply your every need.
I never thought I would see the day of being able to meet other families that walk in my shoes daily. For so long I begged and pleaded with God to help me find someone…surely I can’t be the only one in the world?
As I look back at these posts that I wrote before I started blogging, I see how scary things were. I never got scared “in the moment” of an episode. I would always hold on til the episode ended and then I would lose it. I wanted to be strong for my Brandon and wanted him to feel safe and that I was taking care of him the best I knew how. I kept holding on…..
Brent has a hole in his G-tube! I have been on the phone talking to 10 different people who have no clue of what they’re doing …….. ugh!!!!!!! You would think after having a feeding tube for 14 years that it would be a piece of cake dealing with these companies… *SCREAM* #feedingtubeissues [ it never ends…. ]