Comments From Grandma

When my daughter called me and said that I had a grandson, I was so overjoyed. My daughter put the phone close to him when he was sleeping, and I could hear his baby sighs that melted my heart. When my daughter called me and told me there was a chance that my grandson had Cystic Fibrosis (CF), I wanted to know what CF was, and I wanted to know if they were sure that there was really chance that he could have it. I wanted to know everything possible about this disease and if there was a cure, and how we as grandparents could support our grandson. I said to my daughter "Don't be overwhelmed, we will get through this with God's help." When I found out that it was definite that Azer had CF, I felt devastated. I had heard of a Pastor's daughter that had struggled with this disease and had died at the age of 18.

My daughter and I live far apart, so it took until December for her to come home for a visit. The very first time I met Azer, he looked at me with his big brown eyes, and he smiled at me and his grandfather. It melted my heart. My daughter let me watch him through the night so she could get some rest. It was a long, tiring night but I loved to hear his breathing next to me. I kept my hand on his carrier, rocking him through the night. I remembered how I used to watch my daughter when she was a brand-new baby. But, it was different this time because I was listening intensely to his breathing. I was conscious of every noise and cough he made.

I was impressed with my daughter's knowledge about CF when she came. She explained to me what the different medications were for and how to give Azer his enzymes. When she did respiratory therapy on him, both my husband and I were shocked at how loud CPT was! We were both thinking it was hurting Azer because he was crying. My daughter explained what CPT was for and that it does not hurt. Azer was coughing and having some respiratory problems when he was here. It was amazing to hear my daughter talking in medical terms with the doctor on the phone. You learn all of the terms and names of medications quickly when you have to repeat them so many times to so many different doctors!

The Lord spoke through a Pastor that God saw our concern for our grandson and that we were not to worry about him and to put him in God's hands. This helped us not be so overwhelmed about the day to day ups and downs that we hear from our daughter. Even though my daughter is far away, we keep in touch. I like to tell my daughter about high-calorie French, Hungarian, and Italian recipes that have been in the family for years. These recipes haven't help women's figures in our family, but it will help Azer!

I always like to hear about the updates about CF and the new research that is being developed. It is exciting to watch the average age-survival go up every year and see more and more CF people having families. It puts hope in a Grandmother's heart that she will someday have great-grandchildren!

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