You are new to this CF world.
Of all things I want you to know this: that you are not alone.
We found out that our son had Cystic Fibrosis when he was two weeks old.
I remember getting a call from our midwife when Jadon was just a couple days old saying that his heel prick screening test came back positive for cystic fibrosis.
You may know by now but a screening test does not diagnose Cystic Fibrosis, it simply examines the potential of increased risk. I work in the OBGYN field and I see “false-positive” screening tests come back all the time. So when she called us I really did not believe that Jadon could have cystic fibrosis. “Surely my husband and I would have known that we were carriers to such a disease…”, I thought to myself.
What I have come to find out is that most couples have no idea what they are carriers of, let alone that they happened to join with someone who has that perfect matching gene.
We waited a week longer so Jadon could get his second heel prick, expecting it to come back normal. “It must have been a fluke” I thought. However, when our midwife called back I could tell immediately by the tone of her voice that the test result was not what I had hoped…
“Jadon’s test came back again positive for Cystic Fibrosis, I have been speaking with the specialists and…..”
I don’t think I heard the rest of what she said, tears began streaming down my face involuntarily. My husband took the phone, jotted down the address and time that we would take Jadon into the children’s hospital and have a diagnostic test performed. We would finally have a definite answer.
The diagnostic test is easy and painless. They wrap little sweat collecting cloths around each arm and wait for sweat droplets to be collected. After enough sweat is obtained they test the samples to see how much salt is present. They do this because the cystic fibrosis mutation does not allow the body to hold onto sodium chloride (salt), instead the cells push it out through the sweat glands.
If you licked Jadon’s forehead, he would taste like a little potato chip.
We walked around the hospital with our two week old newborn waiting for our appointment with the cystic fibrosis specialist. My phone buzzed with close friends sending prayers and asking for updates. We were all ready to hear that he was normal and anxious to get back to “real life”.
Finally, my husband and I found ourselves in a little room; with bright colored walls and zoo animals leaping across the exam table. “The waiting is over. They will tell us that his sweat is like everyone else’s. That this was all a mistake”.
Our doctor walked in, sat down, introduced himself and in that moment I knew; it was the tone of his voice… The same one our midwife had. The same one that I have when I am about to deliver life altering news to someone.
“Jadon has cystic fibrosis.”
Our doctor talked with us for a long time. We met with a pharmacist. We met with a nutritionist, we met with a nurse and a social worker…. So many faces, so much information, and the only thing I did for the many hours we were there was cry.
And I continued to cry for a very. long. time.
Like a friend once told me, “finding out your child has a disease or disability feels a lot like you have lost the child you were just given.”
It has the potential to tear your heart out; and in my case made it very hard for me to love anything else for a very long time.
It has been almost eleven months since we sat in that little colorful room, and it has been the hardest eleven months of my entire life.
Though I still sit here writing these memories with tears streaming down my cheeks, I also sit here with a heart that feels some peace again. It has been a difficult road for me but I have learned a lot, been humbled even more, and am on the slow upswing to emotional recovery.
And so new CF mama I pray for you, that you will have an easier time than I have had. As little as my faith has been and my hope for the future, I pray that yours is hundredfold of mine.
My prayer is that my experience helps you carry on another day with a little more strength.
I have a few words for you sweet mama. A letter to be more precise. A letter that I wish I could have read myself eleven months ago.
But I need a few more days to finish it.
Until then, please remember… you are not alone.