If you need anything, let us know.

As we have begun this journey of having a child with CF, a lot of folks have said to us, "If you need anything, let us know." Prayers, thoughts, friendship and understanding is honestly the best way to support Crosby, Lance, and I. 

We've been working so hard on getting chubby cheeks.

I mentioned in my last post that Crosby's diagnosis happened after routine infant screening in the hospital at his birth. However, there is no known family history of CF on either side of our families, so the diagnosis came as quite a shock. Nothing can prepare you for a diagnosis of a chronic, life-threatening disease, for which there is still no cure. On the day he was tested at ACH, as the head nurse of genetic screening and a genetic counselor walked in the room, my heart sank. I had been holding on to the hope that his sweat test would be negative. The nurse and counselor's presence made it clear. He had CF. As they began to talk to us about what the diagnosis meant and what the next steps would be, I felt myself fading off. I didn't want to be where as I was, I didn't want to listen to what they had to say, and I didn't want this to be happening to my baby. Lance seemed to be taking everything in stride. He was calm, he was asking all the questions, he was refusing to freak out. This is a testament to his character. All I could do was look down at the perfect 15 day old baby in my arms and wonder how this could possibly be true.

Since that day, we've continued to go through many emotions. I cycle through grief, denial, anger, depression and fear. Grief, in that I mourn the loss of hopes for a perfect child and normal life. Denial, in that when I look at him, he's so beautiful and and seemingly healthy, I'm in disbelief he has CF. Anger, in that this has happened to him. I know that's a selfish emotion. So many people are struggling with much harder things but I wouldn't be honest if I said the thoughts of "why Crosby" or "why our family" haven't crossed my mind. Depression, in that I feel a deep sadness about the diagnosis. I feel sad that our lives will involve this horrible disease, I feel sad that my son will be aware of his own mortality, and I feel helpless in knowing there is nothing I can do to change that. And finally, fear in the unknown. He is healthy now, but all the "what-ifs" swirl in my head and torture my thoughts. I fear that his health will decline and I fear that he may die.

BUT, and I hope you're still reading after that terribly downer paragraph, as I was discussing all my fears with Lance the other night, he said to me: "If you keep worrying about what's going to happen later, you're going to miss out on what's happening right now." Dang, nothing like a proverbial hit upside the head! Crosby is so perfect and we are so blessed. I don't want to miss out on a single moment with him. I want to cherish every minute. Lance is right. And what he said is EXACTLY what my Dad would've said to me and that is so comforting. So as my fears and doubt and worry start to creep up with their paralyzing affects, I will try to beat them down and just be the best Momma I can be for him. I will love him, care for him, nurture his little soul and try my best to live in the present.

I love him!

So, back to letting you know what you can do. Below is list adapted from material provided by The Cystic Fibrosis Center at Stanford on how to support parents of children with CF: 

Besides the shock of diagnosis, parents new to CF may be overwhelmed by all there is to learn to give daily care, including respiratory therapies, medicines, and nutrition supplements. They may feel pressure to become CF experts too quickly.

Parents vary in their reactions to diagnosis. They have varied ways of coping. One parent may want to learn all about the disease while the other may be too depressed to learn more. CF takes a lot of time and money to treat. Some parents may have to rethink their work, daycare, vacation, school, insurance, travel, and finance plans.

WHAT CAN YOU DO TO SUPPORT A LOVED ONE WITH A CHILD THAT HAS CF?

• LEARN.  Bottom line - learn about CF. The Cystic Fibrosis Foundation (www.cff.org) and the Boomer Esiason Foundation (www.esiason.org) are the best sites.
• GIVE EMOTIONAL SUPPORT.  The emotions can be just as overwhelming as the diagnosis itself. Accept that the parents may be feeling pain and sadness. But also be aware that they may be hopeful and positive.
• DO NOT EXPOSE THE FAMILY TO ILLNESS. For those with CF, there is no such thing as "just a cold." Illnesses can lead to more severe infections for the child with CF. When you visit the family, wash your hands when you enter their home. If the family with CF is coming to your house to visit, and someone in your house is ill, don't wait until they get there to tell them. Call them. Give them the option to stay home. Everyone in the family needs yearly flu shots.
• LEARN ABOUT CF CARE. Daily CF care varies and may include enzymes, antibiotics, vitamins, and other medications. Most children will need respiratory therapy, like the Vest™ or chest physiotherapy (CPT). Ask questions. 
• GIVE TO CF ORGANIZATIONS. Participate in CF fundraisers. By joining the search for a cure, you give hope to the family and lessen their sense of aloneness.
• SPEAK OUT ABOUT CF. Most people have not heard of CF or know little about it. Teach others about CF and the need to find a cure. Teach others about infection control. Involve others in CF fundraisers. Be aware of government funding for medical research at the National Institutes of Health and Public Assistance programs such as Medicaid, Maternal and Child Health Programs, and Adult CF Programs. 
• BE SENSITIVE TO THE TYPE OF STORIES YOU SHARE WITH THE FAMILY. Families hearing about people who have died from CF does not help. Lung transplants may extend the life of a CF patient, but they are not a cure for CF. What you can do is check your license to make sure you are an organ donor. While parents must hope for the best for their child, they live with the fear of the worst. Think about the impact of a CF-related story before you share it.
• TREAT KIDS WITH CF THE SAME AS OTHER KIDS. Children need to be treated "normally." Be sensitive to their special needs and fears, but don't be too careful. Children with CF need limits, just like their non-CF peers.
• EVERYONE'S CF IS UNIQUE. Some may have mild lung disease, others may be hospitalized often for lung, sinus, liver, and GI problems. Many things decide the course of the disease for each person
• WHEN THE CHILD WITH CF IS IN THE HOSPITAL, ASK HOW YOU CAN HELP. Call before you visit, in case the child or parent is trying to rest. If you are sick, don't visit. Don't bring your kids. Ask about special precautions before you visit. Wash your hands when you enter the room. Help with shopping, washing, and cleaning.
• DON'T SMOKE. People with CF work daily to slow lung damage. Do not expose a family coping with CF to cigarette, cigar, or pipe smoke. Second-hand smoke is bad for all. For people with CF, it's worse. This includes smoke on your clothes and hair.
• SHOULD YOU BE TESTED TO SEE IF YOU CARRY CF? CF is a genetic disease. If you are related by blood to someone with CF, it is possible that you can carry the gene. If you're thinking about having children, knowing your status makes a difference. Also, health outcomes are improved with early diagnosis.
• CF IS A LIFE-LONG DISEASE AND COPING CHANGES OVER TIME. People tend to offer help right after diagnosis. Coping with CF is like riding a life-long roller coaster. The best help is long-term support.

Thanks for listening.

Love,

Carmen