Big Surprise (in sarcastic font)

Well, one week of school and Chaz is sick.  He's actually had a nasty sounding cough for a couple weeks but he isn't coughing very much so I hadn't taken him to the doctor.  Saturday night (after his awesome birthday party) he ran a fever.  So, this morning I made him an appointment with the pediatrician.  He seems fine and hasn't coughed lately.  I can't get him to cough on demand but hopefully if there is something wrong they can tell without hearing that nasty croup sounding cough.  Just praying it's nothing and Cole does not get it - anything respiratory always scares me.  It's going to be a long year! 


Thank you so much to everyone who came to Chaz's birthday party and all his amazing presents.  He's sitting in the living room right now surrounded by all of his dinosaurs having a great time playing.  He said it was a "fantastic" party and he had "too much fun".  I will try and get some pics and videos posted this week. 

Lock down no more!!!

Here we go again….back to school. Chaz started his second year of preschool Monday. He has the same teacher as last year but his friends have gone on to kindergarten or moved away and it is pretty much a whole new class. PJ took a little video the first day for me to see. He is smiling as he lines up on the wall. What a difference a year makes. It took him months last year to be able to go in without crying or getting upset. I wasn’t even allowed to drop him off because he would just cry more. Now he’s an old pro! (Fingers crossed this continues!) When I went to register him last year the first thing the one of the teachers said to me was “you know they get sick, right? There are a lot of germs and their first year is always a bad one. We can’t keep them from getting it.” She knew about Cole and I am sure she was just trying to make sure I knew what we were getting into by enrolling him. I knew…it still made my stomach turn. I still struggle with this issue today. Knowing when to protect them and when to just let them live their lives. I knew we couldn’t completely stop living life because of C.F. My gut kept nudging me forward though and telling me this was what we were supposed to do…so we sent him to school. He was sick a lot last year. Luckily, Cole didn’t get everything he brought home and stayed healthy. But, that may be because I pulled Chaz out of school for an entire month.
When H1N1 started showing up in the Quad Cities there were still no vaccines available. I no longer took the boys to the grocery store or mall or restaurants…places where there was a good chance of exposure. Once it got to PJ and Chaz’s school I decided it was too much of a risk. Since PJ had to go to work it was very likely he was going to be exposed. Once the first child in Chaz’s class tested positive, I pulled Chaz out of school. When I thought it was really going to spread around the school, the boys and I moved in with my grandparents so that we would not be exposed to what PJ was bringing home. My grandparents very rarely leave the house so they were safe. It was hard…we were pretty much locked in 24 hours a day for about a week. My gut was just telling me that I needed to do this and it was worth it. By the end of that week the vaccine was available for children with compromised immune systems. I hurried and got an appointment for the boys. Because of Cole's CF the clinic suggested we all get the shot (dead virus) and not the mist (live virus) which made things a little trickier. They would only give Chaz the shot if he had some health issue and I knew I couldn’t send him back to school without the vaccination. So, on the spot that day when the county health department worker said “sorry, I can’t give him the shot unless he has a compromised immune system or asthma” I heard myself say “Yes, he has asthma!” LIE LIE LIE. He does not have asthma. At that point I couldn’t bring myself to say “no, I just lied” so I deceived my way into getting Chaz vaccinated too. Not something I am very proud of needless to say. Also, not the worst thing I’ve ever done.
Needless to say, I was so freaked out over the whole H1N1 thing that I went a bit crazy. The boys had to get 2 shots to be immunized so I kept Chaz out of school until after the second shot had time to get into his system. PJ and Chaz’s school never really had an “outbreak” like I thought it would. There were a dozen or two kids that got it…nothing big and no one got extremely sick or died. I still don’t regret my choice. It was just what I needed to do at the time.
About a week ago I heard on the news that in China and Europe they are seeing a mutated version of the virus that is not responding to their drugs. I started freaking out thinking “here we go again”. It was on my mind and making me a bit crazy for a couple days. The good news is I feel better about where we are this time around. I know that we are heading into another school year full of exposure to germs and who knows what the flu season will bring but I feel more relaxed. I think partly because Cole has been so healthy, partly because he’s older, partly because I have had some more time to learn how I am going to deal with his disease. There has to be a point that I let go of the façade of having control and just give it to God. It doesn’t mean I won’t continue to do what’s within my power to keep them healthy…just that there is a point where I have to let go. I have to allow my family to live and enjoy life. I know that I will struggle with this the rest of our lives and it will change as they grow and the situation changes. I just strive to allow faith ~ not fear ~ to dictate our lives.

The road to Lock Down

This brings me closer to why I held my family captive last fall. Why I quarantined my children and myself and wouldn’t allow anyone to see us. Why I didn’t even go to the grocery store for weeks. Why I lied to health care providers. Why even my husband was too dangerous to see or touch for days. The first time I remember really being afraid of H1N1 was in that hospital room. The news kept coming on and talking about the outbreak and how it had reached the United States. They kept saying how bad it could get and it wasn’t even flu season. They kept saying that people were dying. I knew that the hospital was a great place to get exposed to the virus. I was on guard for someone being brought in with flu like symptoms. I asked the nurses if there was anyone in the hospital that they suspected of having the virus. My son could barely breathe as it was. I couldn’t imagine what would happen if he got H1N1. But, he wasn’t ready to come home yet so we followed every precaution not to come into contact with anyone or anything while we were there. It wasn’t that hard ~ I didn’t want to leave Cole’s side anyway and seeing the other sick children was so agonizing. Since what Cole had was contagious, the nurses had to wear masks and gloves when they came into his room. We had to wear them when we left his room. Most people would probably detest that -I loved it! A visible barrier between germs and my son. Viable proof that we were doing something to help protect this tiny child.
On Friday afternoon we were released from the hospital. As I said before, it took Cole several months to fully recover from this illness. I will never fully recover. The memory of those days will forever live inside of me. I can only hope that Chaz has forgotten. Unfortunately, even when our minds forget our bodies and souls don’t.
The summer was pretty uneventful as I remember it. We were making our monthly trips to Iowa City to the clinic. He was on antibiotics for months back then. Any time he was congested and coughing a lot they put him on antibiotics because he is more susceptible to a secondary infection so he was always on something it seems like. I hated this – worrying it would harm him somehow or that his resistance to them would build. I also liked knowing we were killing (at least trying to kill) everything he was coming in contact with. I was still so afraid of everything – always on edge and just waiting for disaster.
The next big event was our first (and only) pseudomonas (Pseudomonas aeruginosa) culture. The boys and I were driving Nina to Kentucky to her sister’s funeral. (Rip sweet Margo!) About an hour and a half out of town the clinic called to tell me he had cultured it. She said she would be sending a prescription for a nebulizer, oral antibiotic and Tobramycin. We had only used a nebulizer at the E.R. or hospital and we did not have one at home. I told her we were heading out of town and wouldn’t be back for a couple days. She said to wait until we returned to start treatment. We would have to order the equipment and it would be easiest to do at home. All I really knew then was this was one of the “bad” bacteria ~ One that they had a hard time getting rid of and caused of a lot of the lung disease which leads to their death.
When we returned we ordered all our new equipment and medications and started. It was scary because it was all so new. Being responsible for administering these medications to your child is very stressful. I worried I would forget a treatment or he would fight me the entire time. I worried that I was not doing it right or would somehow mess it up. I worried that the drugs wouldn’t work. I worried that the drugs I was giving him were doing harm to him somehow. I just worried. Amazingly enough Cole has not cultured P.A again!!!

The next event was a couple months later. I received my monthly email after our clinic visit with our culture results. This time he had cultured MRSA (methicillin-resistant Staphylococcus aureus). I freaked out. I only heard of people having open sores or wounds that got infected with MRSA. I didn’t know that it was commonly found in people’s nasal cavity and mouth. At first I don’t think the clinic was going to do anything to treat it. I was a hot mess about it though and think I even said if they didn’t take this serious I was going to get a second opinion at another clinic. Our wonderful clinic director was no stranger to my freak outs at this point. (At one point I had a list of issues I took to the clinic for them to address. They handled me very well and did not get defensive. I think this is how I knew Cole is where he needs to be. They asked me to join the parent committee to make sure I was involved on the way things are being done. They didn’t avoid me or begin hating me even though I could be such a royal pain in the arse!)
The director assured me that they were taking it very serious, gave me some additional information about MRSA (probably even statistics) and wrote us a script for bactrim I believe. And once again, I am so happy to say that is the only time he has cultured MRSA!

When the bottom fell out (Part 2)

It was a long, long ride to Iowa City. The ride from the pediatrician’s office to the hospital was my first in an ambulance. This was my second. I rode along with Cole and the medics. PJ followed in our car. I was nervous to have him driving on Interstate 80 while he was scared for his son’s life and trying to follow and keep up with an ambulance. I felt so guilty for leaving Chaz behind. I barely explained to him what was going on and I know the day had been extremely traumatizing for him. I think I hugged and kissed him goodbye when he left the E.R. with my mother. Luckily, he loves his Oma & Papa and thinks it’s a treat when he gets to spend time with them. Cole seemed to have stabilized. He actually slept the entire way there – a true blessing. I talked a little to the medics. They were curious about CF and what it was. I told them what I knew and they complimented me on my knowledge of the subject. That’s just what you do when your child or loved one has a disease - learn everything you possibly can about it. And I still have so much more to learn. At one point the medic got out some paper work that I needed to sign. It stated how much the ambulance ride would cost and that I would be responsible for paying it. Knowing that no matter how much it cost, we would be making this trip, I tried not to look at the amount. I still caught a glimpse and saw that it was not in the hundreds but the thousands. I tried to push it out of my mind – it was irrelative. But I did finally inquire about insurance and if it normally covered trips like this. The medics assured me that it would and I let those thoughts leave my mind again so I could focus on what was important.
The University Of Iowa Hospital is huge. The ambulance took us to an area of the hospital I had never even seen. Even the medics seemed a little confused about how to get to where we were supposed to go. I think someone showed up to take us there or told us where to go – through corridors and hallways, elevators and double doors. I wondered if PJ would ever be able to find us. We had to walk by so many people on the way. It’s horrible to see their faces when they see a tiny baby on a gurney being wheeled in by medics. I tried to avoid making eye contact with them. Afraid if I did I would let out a horrible scream or just fall into their arms. Finally we ended up in the pediatric inpatient unit. We were brought into a room across from the nurses’ station. Again the room filled with medical staff. Identification bracelets were placed on both Cole and me. He was again being detached from some machines and attached to others. Cole was placed in the “cage” (a crazy crib with bars all over and things hanging around it and above it) that they use in those places. To my relief they left the sides down so I could get to my baby if I needed to. I stood next to him and a young girl started asking me questions. After I had answered a couple questions that I had already answered that day Cole began coughing and fighting for breath. This girl continued asking me questions (stupid stupid questions I have to add!) and was waiting for my response. When I realized that she only glanced over at him momentarily and back to me I lost it yet again. “Do you think we could focus on taking care of my baby before we do this?” I said in a nasty but desperate voice. She got my message and started tending to Cole but she managed to slip in a “you’re a crazy b” glance my way. I hated feeling so out of control but nothing was going to stop me from doing what I thought needed to be done for my child.
Again they got Cole stable. Even when he was stable it was absolutely horrifying to watch him breath. His chest was retracting - something I had never seen anyone do. Something I hope you never see – especially a tiny little baby. It looked like something out of a science fiction movie. They drew blood to test and hooked him up to an I.V. After a while the resident came back in to talk to us about what was going on with Cole. You should have seen my face when he told us that his illness had nothing to do with his CF! I was completely flabbergasted. Cole had Para influenza ~ A very common bug that goes around. We were told that because he was so young his lungs couldn’t handle it as well and that is why he was having such a difficult time. I still have a hard time with this. A part of me will always believe that his treachea malaysia and CF had to of complicated it and caused it to be the horrible mess that it was. We’ll never really know.

Those 3 days are so blurry. I know once Cole was doing okay and we were settled in our room they gave me a tour of the floor. The nurse said “Since you will be spending time up here”. She meant since Cole has CF and this is where he is treated she expects that we will be coming for stays often enough that I had better get to know the place. Was this really what my life was going to be like? Would I one day find that me living in my child’s hospital room is normal?

I didn’t like leaving our room. It was hard to be out of arms reach of Cole at all ~ Afraid he’d be unable to breathe and need suctioning. The little girl next door cried a lot. It was a cry of pain and so heart wrenching to hear. A boy down the hall was recovering from open heart surgery. Another little boy had been wheeled in during the middle of the night after a surgery of some kind. His father and 3 little siblings were in tow. I had to go to the kitchen for something and ran into them. The floor was at full capacity. Sick/injured children were everywhere. I couldn’t handle seeing them and their families and the only way to avoid it was to stay in our room with the door shut and the curtains drawn. I wonder if I will ever be stronger – if life will thicken my skin enough that bearing witness to other people’s living nightmares won’t be enough to make me run into our room to hide and cry??? I hope not.

My mom came up and stayed with us the second day. We wanted to try and keep Chaz’s life as normal as we possibly could so PJ went home the second night and Chaz got to sleep in his own bed. Having my mom there was huge! She even stayed up with him that night and let me sleep. In between treatments, medicines, diaper changes and feedings it was pretty much just sitting and watching Cole breathe – in and out – in and out. Each time another agonizing victory. I kept waiting for the retracting to stop but it didn’t. It took months for that to no longer be visible. It even changed the way it looked as he grew. It was a daily reminder of just how fragile he was and where he’d been. The congestion took even longer to go away. He spent most of his first year of life congested. I urged the doctor assure us that Cole would be okay. I needed him to tell me that I would be taking Cole home with me and he would be fine and he did. With that I was able to come back from that place I went when I thought I was going to lose my son. I came back – but I will never ever be the same. That was the day the bottom fell out. From that day forward I have ALWAYS been aware that it can fall out at any time. And no matter how good I think we’re doing I am always waiting for it to fall out again.

When the bottom fell out (part 1)

I have to be honest I cannot really remember what was happening or how I was doing in the time between the diagnosis and his first illness. I thought I was doing really well at the time but I know none of it had really become near a reality yet. It was not enough time to fully process even what the disease was ~ not to mention the fact my newborn son had it. So I can say with certainty now I was nowhere near being okay! I think I was just hanging on as tight as I could to hope and a belief that I was still going to wake up or someone was going to tell me that Cole would be perfectly fine. I was also still holding on to the belief that I could deal with this without completely falling apart.

My memory is probably pretty distorted. But this is the way things seem now, looking back. Those first days, weeks we had so much support. People were truly affected by our news. We received hundreds of dollars worth of gift cards for food and gas and even cash from Pj’s coworkers. It was truly amazing how much people cared and wanted to do something to help us out. We received gifts, cards and well wishes from friends and family. We were told we were added to numerous prayer lists. One of my girlfriends had a baby about a month before us. It was also their 2nd. I remember hearing how hard her husband (someone I barely knew) was taking the news. It was the stories like this that touched our hearts. The sympathy and compassion of our family, friends and community was amazing and overwhelming. The greatest gift I was given during that time was Jenny. Out of nowhere one afternoon right after the diagnosis she knocked on my door. She smiled, teared up and hugged me. She knew exactly what I was going through and without her even saying a word I felt that. Even though we hadn’t talked in years she knew what I needed. You see her son was diagnosed with CF earlier that year. Her story and “plan” are quite different from mine though for many reasons. (Sorry Jen – you’re getting talked about yet again!!! If you see 2 posts ago – it is Jenny and Jenny’s family that I am talking about and to. They have been through and continue to go through more challenges and loss then I can ever imagine ~ They deserve our prayers and admiration. They are truly amazing and strong!) One of our differences is that her son was diagnosed when he was around 9 years old. You see there was no CF newborn screening when he was born. There wasn’t even screening when my older son Chaz was born just 2 1/2 years before (and oh, I plan on telling you all about this and his CF testing later). So, Jen’s son had gone through life diagnosed with asthma. Until he started showing signs of pancreatic enzyme insufficiency, there wasn’t even a thought that it could be CF. This happens all too often with CF. There are so many symptoms that can be overlooked or diagnosed as something else. If you never have a bowel obstruction (as so many don’t) and are enzyme sufficient or your body is not starving itself to death it is easy to go thru life under the radar. I would be scared to know how many parents had their children taken away from them for failure to thrive because of undiagnosed CF! I could go on for days on the importance of newborn CF screening but I won’t. I am so blessed because I don’t have to – others have been fighting that fight and won. All 50 states now screen newborn babies for CF. One small step towards saving our children – or at least giving them the chance they deserve starting life. Anyway - Jen told me that day with conviction in her eyes that everything was going to be okay. It was the first time anyone had said that to me – or at least it was the first time I started to believe them.

My sister’s way of dealing with the news was to get very involved with our chapter of Great Strides (The fundraiser for The Cystic Fibrosis Foundation). In the 4 weeks between Cole’s diagnosis and our local walk she had gathered a team of around 50 people and had raised more than $7,000! Our wills were strong – we were doing everything positive we could think of and I do believe it was helping us get through the days. Our Great Strides walk was on April 25th and my 31st birthday was the day after. Team Cole received first place by bringing in more money than any other team that year – Our first year involved! After the walk we had a party at my mom and dad’s. That evening my parents watched the boys overnight so PJ and I could go out with friends and celebrate my birthday. In the middle of the night, Chaz got sick and was throwing up. My parents took care of him and called us in the morning to let us know.

I guess I have to insert here that I was already living a life a bit different than most people. At this point in Cole’s life, he probably hadn’t ever been to a store or even out in public unless he had to. He did not join us at the walk – Nina watched him. There would be too many people around and also there would be other people with CF there. For those of you who don’t know the ins and outs of CF – people with CF are actually supposed to stay at least 3 feet away from other CF’ers. And, if you are culturing one of the nasty bacteria, you really should not go to any place or event that there will be other CF’ers at. So, taking Cole to the walk wasn’t even really an option that first year. It was all still too new and scary. I was still on maternity leave and if I had to go to an appointment or the grocery store Cole would stay home with his dad or go to Oma’s or Nina’s. There just wasn’t any need to expose him to anything if we didn’t have to and for the most part we didn’t. We had at this point gone to Iowa City and met with the Cystic Fibrosis Doctors and nurses once. We felt good about what we saw at the clinic and were planning on taking him there for his monthly check ups and care.

Back to the illness - The boys had been all over each other the days before so I had a feeling that Cole had probably already been exposed to what Chaz had. Well, a couple days later he got sick. He was very congested and snotty and coughing a bit. That horrible Wednesday morning began like any other. Around 9 a.m. my grandmother (Nina) called me and decided to come to our house (PJ was at work) and help me out. I was still learning how to be a mother to 2 boys at the same time as well as one with special medical needs. The fact that he was sick was enough to throw my life into chaos. By the time she arrived, Cole’s breathing had become a bit labored. Thank God she came over. I don’t know if I would have recognized there was a problem as early as she did. We decided we should take him to his pediatrician. We all got in Nina’s mini-van and started toward the office. About 2 miles from home, his breathing worsened. At that point, my safety freak Nina demanded I go to the back of the van and get Cole out of his car seat to ensure he kept breathing. Anyone that knows Nina knows this was CRAZY. The woman won’t let you out of the driveway without a seat belt on – let alone an infant out of a car seat driving down the road. At that point I did what she said and held him on my lap in the back of the mini-van. I had no idea what I was supposed to do for him so I just kissed him, talked to him and prayed. Nina sped up and began running red lights! Chaz sat quietly and watched all of this go on around him – never saying a word.

We entered the office (with no appointment) and I said to the lady at the front desk my son was having problems breathing. Now, for you moms who have been doing this for awhile I am sure you’re saying to yourself – why didn’t you just go the ER? Well, this was all brand new to me and I guess I didn’t even think about it. Also, Cole went from a little sick to not breathing in a matter of minutes. Everything we’d learned insinuated that CF was not going to just kill him all the sudden. It was a slow deteriorating process that would take years, right??? We really didn’t have any idea what to do or what was going on.

Once the lady at the front desk saw Cole’s face, they rushed him into a room. And again - things get very foggy at this point. I know the room filled with doctors and nurses. I know I told them he has Cystic Fibrosis. I know they all seemed scared and were taking this very serious – scurrying around with medical equipment and asking each other questions. I know I felt completely helpless that I could not do anything for my son. I let myself stand along the back wall of the room out of everyone’s way. I know the idea that he may not make it started settling in my mind and I started to try and figure out how any of us were ever going to make it through this. I know I hated the fact that I was putting Nina through this. She had already lost 2 babies of her own and I could tell by the look on her face she was thinking we were losing another one. We were praying but I don’t know if it was silent or out loud. At one point she said to me something like “Sometimes there is just nothing you can do”. She was trying to prepare me for worst. I know that my 3 year old son was standing there with us, watching the chaos and sensing the fear. As they began giving Cole his first breathing treatment I called my husband and my mother. The pediatrician called an ambulance.

When they felt Cole was stable we were put into the ambulance. I was allowed to ride along with Cole. I think Nina took Chaz with her and PJ met us at the hospital but I don’t really even know. Cole was now on oxygen. I just glanced back and forth between the machine that told me his oxygen level in his blood and heart rate and his little face. They put him in his car seat and strapped it down to the floor of the ambulance. I sat on a bench on the side – way too far away for my liking. The sirens and lights were turned on and off we went to the nearest hospital.

In seconds we were there. Someone was wheeled out of a treatment room so we could be brought in. Again, numerous people filled our room. Some were asking me questions. Some were hooking up Cole to other machines. Some were just watching and listening. He was suctioned out a bit I think and then placed back on oxygen. The medics were filling them in on what was going on. I was standing nervously beside the bed. Soon he started having problems breathing again. If any of you have seen the movie Terms of Endearment- this is pretty much how I behaved at 2 different times while he was in the hospital. Remember the scene where Shirley MacLaine’s daughter is dying and needs pain medicine? She walks out to the nurses’ station to ask for it and when no one reacts she just starts screaming out of control until they do what she wants. Well, I told you I’m assertive, direct, controlling – I wasn’t joking. If I didn’t feel like I was being heard or Cole was getting what he needed I let the staff around me be aware of it – But at that time I was also out of my mind a bit and the only way I knew to do this was to become a bit verbally combative and loud. (This is also another huge topic – advocating for your child – I plan on discussing in depth on my blog.) When I realized no one had told them that Cole has Cystic Fibrosis I completely lost it. I thought this was such important information – how could the medics or his pediatrician’s not have informed the ER staff??? I let them know that I was appalled by their incompetency in their jobs. They looked at me like I was a crazy woman but I didn’t really care. They now were very aware my son had CF. Hell, the whole E.R. probably knew!

We were there for a couple of hours I believe. I can’t actually tell you much about it – I wasn’t really “there”. I think a part of me left when things got too tough. Or maybe my mind was just so overwhelmed I couldn’t possible think all those thoughts and be aware of all the goings on. When I look back now, it feels like I was drugged almost - Like they slipped me something to calm me down. Maybe they did!!! Or maybe PJ did!!! At one point, they asked me what I wanted to do. HA! What I wanted to do. I wanted to wake up from this nightmare! But instead I suggested they ask his CF doctor what we needed to do. This would be the first of many times that a Doctor asked me what I think needs to be done for my son. This is something that still makes me quite uncomfortable with the whole situation and something as I said above I will write about in detail later on – advocating for your child. When they felt it was safe for Cole to travel we were put in another ambulance. This time we were headed about an hour away to the University of Iowa Hospital where Cole is treated for his Cystic Fibrosis.

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. 

Darkness

It’s been awhile…… I think it’s a combination of not making the time and not feeling the drive to write. It is usually a good thing that I don’t feel like I have to spill the inner ramblings of my mind and soul in order to try and make some sense of it all. I think this time it is just that what I am trying to process is too hard to write about. It’s not actually mine – just mine to react to - and who am I to even react to it or talk about it. It isn’t me who had my precious child taken away from me in an instant. It isn’t me who lost my mother and my nephew in the same year. It isn’t me who has so much illness and disease surrounding me that it seems no one in my family is safe. It isn’t a 16 year old me who went for a ride with her first love last Friday night and ended up the only one making it home alive. But I keep finding myself grieving and questioning and reasoning with God as if I have some idea of what any of these people are going through. I am so far removed from the horror, the grief, the loss and I’m still feeling my chest fill with fire and the tears well. Yet I cannot begin to pretend to feel one millionth of what these people feel. I feel guilty for having grief - as if it is not mine to have.
I am lucky – I am safe – I am spoiled.
And knowing this I tell myself to stay in the moment. Enjoy each diaper change, each book read, each time the boys disobey me. I am blessed to get these moments.
But flawed as I am, I cannot always stay there. Every day I find myself wanting a break or wishing a moment away. If I were the one this happened to would I ever understand how moments can be wished away again? What would they give for that moment……



So to you who are truly hurting - who are really going through this  -
I am so truly sorry for your loss. I pray you can somehow make peace with your “plan” and I am so sorry that it is such a difficult one. I will not attempt to say any more than that. I do have a shoulder to cry on, arms to hug you, and ears to hear your pain and they are always yours for the taking.