We took Jude to his 1st Baseball game a couple of weeks ago and he had so much fun, mostly people watching. A few days later Jude and I both ended up with Sinus infections. I freaked out and took him to Urgent Care when he woke up with a runny nose. I know it doesn’t seem like a big deal but when you have a child with CF, you don’t know what you should panic over when they are this little. His little nose was runny and he just did not seem himself. I took us to a CareNow and the Dr saw us at the same time. She told me not to worry, that she would prescribe us both antibiotics. Two days later we took Jude to his CF Clinic visit and they confirmed that Jude would be ok. They said its normal in the change of seasons for babies in general to get runny noses. Crisis Averted!
Jude won a photo contest that raised money for CF research! He’s the Grand Prize winner in the middle. We won 2 airfaire tickets!
We went to Miami, Florida for a week. Jude loved pretty much every minute of it. He was good on the plane and he barely cried all week. There was just too much for him to see to be grumpy! His treatments were easy because his Dr prescribed him a travel inhaler for one of his treatments. It takes way less time with the inhaler so we had more time to have fun. The Salty air was great for his lungs and I could tell he felt his best.
When I look at my son its hard for me to believe that he has a chronic illness. He is so beautiful and full of spirit for everyone he meets. He looks so happy and healthy. I was starting to think I may be a little bit in denial about his illness. His enzymes and treatments have become normal so I don’t think twice about it or complain.
I took my son to church camp with me and I couldnt slip further into denial as many adults asked me about his health and how they are treating it. Some thought there were no treatments unless he got sick and some thought he just had one treatment. They told me what a great mom Iam for keeping him healthy and how strong Iam for staying positive but the truth is Im still pretty scared. The future is unknown to me. I see it as selfish if I feel sorry for myself over it. He is the one who has CF, not me. I have no right to feel sorry for myself.
(Books given to Jude at Camp)
There was a camper at camp that I have known for a long time that has CF. Him and my son have to stay away from eachother. When the Dr said he had to stay 6 feet from others with Cf it seemed reasonable but in real life it was painful. I had to say hello to him from a distance even though I wanted to let him hold Jude and play with him. I wanted to give him a big hug and tell him how brave I think he is. I wanted to give him some hope because he seemed particularly beat down this year. It makes me sad knowing that Jude cannot have the commraderie of having a friend going through the same thing as him, it makes me angry. Most people tell me “oh hes going to be so healthy and he is going to be just fine”. I know he will be fine but I also know that life will be hard for him. My church does prayers of administration. They are like prayers on steroids and ones I have gotten have truly changed my life. Through the years I know Jude will need them to stay strong. I know that with prayer, enzymes, breathing treatments, the vest when he gets it and the support of our families and church families will all work together to form a wonderful boy with ambition and drive despite his illness.
Jude is 5 months old today and healthy as a horse. Hes made friends at church and he loves to hear us sing hyms. He doesnt seem to mind his treatments and takes his enzymes with no problem. He started eating baby food and rice cereal. He likes every veggie he has tried! He has put on weight and is no longer underweight!
To find out more about CF and how you can help click here: https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
Thanks for reading! I hope you have a wonderful day!