The diagnois

Since I started this blog when Cole was 15 months old, I missed some pretty important events in his life. Here’s a little stroll back in time at how we came to be where we are now. I will start with the day that forever changed everything I thought I knew about life...the day my entire world was picked up and put somewhere else.
Cole was diagnosed with CF through newborn screening. Thank God for all of you people who fought to get that passed! When he was 14 days old I received a call from our pediatrician’s office that we needed to go to Peoria for a test because his screen had come back abnormal. I asked for what and they said Cystic Fibrosis. I knew what it was – my friend Cassie’s brother had CF. I knew it carried a life sentence. I knew it was a genetic disease and that neither Pj or I knew of anyone in our families who had it. I thought it was just a mistake but was concerned just the same. I frantically got ahold of our insurance to verify coverage of the Doctor in Peoria as instructed and called the pediatrician’s office back. I told them that I wanted to go ASAP – they told me it could be weeks until they could get us in. I pleaded with the nurse to do everything she could to get us in soon. I knew I would not be able to exhale again until I had those test results. Within 30 minutes they called back with an appointment for that afternoon. I called my husband and told him he would need to come home straight away and drive us to Peoria so Cole could have the sweat test done. Nina came over and my mom came home from work and stayed with Chaz. I threw on maternity clothes since they were the only thing that would fit me, packed the baby’s bag and paced until PJ got home. The drive was surreal. An hour and a half of phone conversations with our family asking if they knew of anyone related to us who had CF. Telling myself over and over again it couldn’t be – it was just a mistake.




As we carried our tiny new born baby strapped in his huge travel car seat into the hospital in Peoria, I was suddenly aware of the other babies and children that were all around us. I started thinking, ”Why are they here? They don’t belong here, we don’t belong here. They could get sick – this is not a place for children especially tiny babies!” But when I started to look closer I realized they weren’t just passing through. They weren’t just visiting. They were here because their lives – or the comfort of which they would live their lives – depended on it. This was my first real glimpse into the “sick world”. How had I gone so long without ever really seeing this place existed all around me? Or probably more like how had I gone so long with blinders over my eyes so I wouldn’t see this world existed. Little did I know this would from here on be my world. And that one day not too far from then it wouldn’t even make me cry to say it. It would be a place I had become comfortable in. Well, as comfortable as you can possibly be in a place like this.



The sweat test is a strange procedure in itself but it is not invasive and does not hurt. I was a mess just the same – and it seemed to take forever. After the sweat test at the hospital, we were to go to the pediatric CF clinic. It was in another smaller building about a block away. It was far enough that we got the car and drove to it. It was on the second floor of a community clinic type place. It was run down and there were a lot of “run down” looking people there. I remember feeling their hatred or indifference as we walked through the waiting room to the stairs to get to the other clinic. Things get very foggy at this point. I remember the nurse coming to get us and getting Cole’s weight, height, temp etc. I remember her asking us if he poops every time he eats. I remember thinking she didn’t know what she was talking about and hating the way she was looking at us and speaking to us. I didn’t realize what I was picking up on then – her empathy, her sorrow for what we were about to embark upon. I just knew I hated her for absolutely no good reason. I thought I knew that soon I would be walking out of there with my planned life back to normal – proving all of their tests wrong. I knew nothing.



They placed us in a small room – no different than any room at your child’s ped’s office. A group of Doctors, nurses, counselors, who knows were on hand. I don’t know who was in the room when we were told. I don’t know if they were in the room before or after we were told. I do know that even though we do not go to Peoria for treatment – I was sent there that day for a reason. The middle aged woman who runs that CF clinic in Peoria!! If you ever have to hear this kind of news, and I hope you never do, it should come from a person like this. I don’t know what it was – that she was a woman and a mother – that she was just a wonderful person - or that she had done this so many times she had perfected it---whatever it was ---- I am grateful for her and her skill at informing 2 parents their newborn son has a genetic disease that will probably kill him. In my head it went something like this – “There is no good way to say this so I will just say it. Cole has Cystic Fibrosis. I am so sorry.” I know it sounds so stupid and simple but there was just something about her. I didn’t want to kill her or yell at her or blame her. And well, I think that in itself is absolutely amazing.



I’m usually very assertive, controlling, direct, even overbearing at times. I don’t think I said more than 3 words the rest of that appointment. They started going over some basics with us…the things we needed to know right then. Giving us the enzymes we would need to start giving him every time he ate. Handing us papers that started to explain the disease, the medications, the treatments. I think they offered or brought in a counselor. PJ stepped up and handled what needed to be handled, asked what had to be asked. I sat. I cried. I stared. You would think I would have gone straight into a panic attack – I did nothing of the sort. A trance like state took over for the most part. After the initial sobbing and gasps it was quiet, calm. Shortly after that I think we left. They don’t want you driving right away while you’re upset so they have you try and “collect” yourself before leaving. Luckily, they know you will not remember most of what they say to you that day so they don’t say too much.
On the hour and a half ride home I sat. I cried. I stared. Oh, and I broke the news to the rest of our family.  That was kind of like taking the knife that had been shoved into my chest and pushing it deeper and deeper into the gashing wound. And Then, I sat. I cried. I stared.  I think for the next couple weeks, in between break downs and manic drives to educate myself on CF I sat.  I cried.  I stared.