Sunday, March 29, 2015

When you tell someone your child has Cystic Fibrosis...

When we tell people about Roanan having Cystic Fibrosis they usually have a few questions/statements.
  1.  I'm so sorry...
  2.  How are you and Seth handling it?
  3.  How is Roanan?
  4.  What is CF?
  5.  How does this affect your daily life?
  6.  What is Roanans future going to be like?
  7.  How can we help?
My response to the above is usually as follows:

1. Don't be sorry. We are so blessed with a wonderful life. Me and Seth are so thankful that we found each other, then all of our dreams came true when God gave us Roanan. Of course being diagnosed with Cystic Fibrosis was not something that we were prepared for. Nor was it something that we had hoped our child would have, but it is something that we can handle as a family. Together we will grow in the Lord and we together we will find a cure. Don't feel sorry for us, we love our life and we are so thankful for every part of it. Roanan is our greatest blessing, and we would never trade him for a child without CF. Cystic Fibrosis will not be the author of our story.

2. I wish that I could say me and Seth were 100% understanding and accepting of the diagnosis, however, that would be a lie. To say that our emotions were all over the place would be an understatement. At first, we were filled with shock accompanied by fear. We were so surprised because R did not suffer from any symptoms that infants will CF usually possess. He was healthy and did not appear to have any issues breathing or digesting food. He was steadily gaining weight and having regular bowel movements. We were 99.9% certain that the test were incorrect. Once we received the results of the first sweat test we began to accept the truth. Our son had Cystic Fibrosis. We were angry, confused, scared, filled with disbelief, and had zero sense of understanding. As the days progressed our feelings changed. We started to see Roanan again as our child, not as a little fragile boy who was just diagnosed with an incurable disease. We put ourselves aside and began to live life for our son. Seth and I accept that R has CF and we are not scared for his future. We are so positive about a cure and giving R a normal life. Together we are working on understanding God's plan, and forgiving ourselves for giving Roanan the genes for CF. All in all, we are so happy and living our dream.

3. Roanan is your average 6 week old little boy. He loves tummy time and playing in his play yard. He looks around and stares at us with big, bold, full of amazement eyes. R eats every 2.5 hours or so and he enjoys every second of it! He sleeps great through the night. His favorite past time is laughing at his dad and smiling at all the ladies. R does great with his treatments but he doesn't enjoy the taste of his aquadek's. To say Roanan is a flawless little man would be an understatement...

4. I have described what CF is in a previous blog post but I'll try to summarize. Cystic Fibrosis is an inherited life-threatening disorder that damages the lungs and digestive system. In CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.

5. We are just beginning our journey with CF, but it feels like it has already been a part of our lives forever. So far, we are doing nebulizer treatments with Albuterol twice a day and Roanan receives Aquadek's vitamins .05ml once a day. I feel like I watch R with the eyes of a nurse vs the eyes of a mom frequently. Meaning, I listen deeply to his coughs and  keep track of their frequency throughout the day. I squish bowel movements to check consistency, color, smell, and size. I fiddle with his sputum to examine the texture, color, and amount. I check Roanans temperature around 3x a day. Also,  I document our days and try to compare my notes weekly. But this doesn't take time away from me doing all the fun mom things. I love to read to R and he enjoys it as well. I love to fly him around the house and remind him that he is a superhero. I make it a point to snuggle and kiss him every chance I get. Every second of every day I spend my time showing and telling Ronan how much I love him.

6. I have tried to describe in previous posts about what we plan for Roanans future to consist of. He can and will lead a normal life. R will be very active and probably participate in sports year around. He will attend school and participant in all the activities he pleases. Coughing could increase and play an active role in his everyday life. He could require enzymes and other medications as his CF changes throughout time. For now, we are very hopeful that he will continue to not require any additional medications. Thankfully, CF will not affect his mind or deteriorate his muscles and/or skeletal system. Therefore, he will be taught morals, character, manners, respect, and love.  His future is so bright we need sunglasses!!

7. Prayers are always welcomed and appreciated. Not just for our family, but for all families battling Cystic Fibrosis. We will be participating in the Great Strides walk in Knoxville on May 9th. You can join our team or donate by clicking the link below. We will be selling CF awareness t-shirts and may have a few food related fundraisers. I will provide more information/details once they become available. Also, feel free to donate to the CF foundation at any time. Thank you, and we appreciate everything you are doing for Roanan and our family.
Love you all.

http://fightcf.cff.org/site/TR/GreatStrides/124_Tennessee_Knoxville?team_id=37261&pg=team&fr_id=3508


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