Last night was a rough one for me. After I got Roanan to sleep I held him on my chest like I always do and I read my nightly blogs, checked yahoo news, and finished up with Pinterest. Tonight my Pinteresting lead me to a blog written by a mom who lost a child to EB.
Click here to view her wonderful blog. (Like I said, found on Pinterest)
An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and wounds that never heal. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer. It is estimated that EB affects at least one in every 20,000 births. EB is not specific to any ethnicity or gender. Given that EB affects only 30,000 people in the US, advancing this research relies on the generosity of individuals and corporations.
I read as many blog post as I could without breaking down. I did alittle research about EB and tried to understand what a parent of an EB child would go through on a daily basis. The blog was full of Gods love and his never failing word. She always referenced scripture and praised God for her wonderful child.
I, in tears, laid R down beside me and had a nice cry. I thought about how many things have to go right in order to have a perfectly heathy child. I thought about all the parents of newborns who were just now hearing the news that their child needing more testing... All the parents who have lost children to disorders, illness, etc. All the children who never got the opportunity to simply be a child. I immediately felt overwhelmed... All at once all of this worlds hurt, trouble, and pain filled my mind. I felt nauseous and alone. Currently I have no home and I am living with my parents, my husband is working on his masters in teaching, all of my things are distributed throughout the county in various totes, my child has cystic fibrosis, his nebulizers are still sitting in alcohol waiting to be rinsed, all of these people have so many issues way worse than mine and I'm sitting here having a moment... I felt scared, ashamed, and alone. The only thing I felt I could do was hit my knees and cry out to God. When I got out of bed to bow to God R woke up terrified. I instantly swooped him up and pressed him on my tear soaked chest. His hair was sweaty and his skin was warm against my own. He quickly calmed down and God spoke. He whispered for me to hold my perfect son and vocalize my prayer out loud. (I was thinking, if I make a peep this little human will be up all night, oh my.) But I had a feeling God was right, so aloud I prayed. I started out by thanking God for my son. For his flawless skin, his attractive beauty, his 10 fingers and 10 toes, his flowing hair, his 2 tiny birthmarks, his perfectly shaped ears and eyes. I gently stroked my sons hair and spoke gently and with purpose when I thanked God for every physical thing I could think of on my child. Then I went on to thank him for his personality, his ability to learn, his joy and happiness. I thanked God for every beautiful trait my son has. Next was his health. Yes, my son has CF, but my son is healthy and we are so blessed. I thanked God for his clear lungs, for insurance, doctors, hospitals, treatments, neb cups, germ killing items, researchers, the CF Foundation, our clinic. I felt so blessed to have so much. As my tears dropped onto R's clothes I began to feel a peace. I continued to pray for R aloud. For his future, his health, his development, his life, and etc. For the past 3 hours I had been bawling my eyes out. Truly overwhelmed by everything I was dealing with along with all of the world's issues. And in a 5-10 minute prayer God spoke through my sleeping child and gave me peace. He removed all the worry that didn't belong to be. He reminded me that this world was only temporary and that he has a plan for each life he creates. It's not my job to understand why things occur, but it is my job to run to the rock when I feel overwhelmed by this life. When I feel like I am drowning I should cry out to the one who gave it all for me.
Last night I felt God move. I saw God use my son for my benefit. I felt so blessed to have a father who provides peace in a moment of distress.
Please remember all the people living with EB, CF, and any other disease or disorder. Remember their families and believe that God has a beautiful plan for their life...
Thank you Lord for loving me and giving me this life. I praise you for my flawless son; he is the sunshine in my day. Everyday he amazes me and shows me the beauty in this world. Thank you for always being the solid rock.