Yes, Mason is one year old and I have yet to post his party (and so many other happenings) for the world to see (tisk, tisk).
However, today is one of those dates. Those dates which are forever burned into the depths of your brain. Those dates that you can recount the day almost what feels like minute by minute.Those dates which you would rather not remember. Today marks one year since Cystic Fibrosis entered our daily vocabulary and lives. One year since our long awaited dream of a "healthy" child ended. One year since the world felt like it was crushing us beyond repair. One year since it felt like the end of the world. One year since buckets of tears were shed. One year since angry then pleading/begging words said to the Lord. One year since our minds went numb.
9.20.10
The weather today was actually eerily similar to that day. It was a gorgeous day. A day that had been filled with a lot of promise. I took Mason to Children's that morning to have his sweat test to see if he indeed have CF. I went so begrudgingly because we had been told Derek was not a carrier from fertility testing. But, there we were at 9am in the outpatient lab talking about life as if nothing were going to change. So blinded by our ignorance that this "simple" cruel experiment of a test was a game changer. This was a serious, genetic, non curable, life shortening, medically complex, emotionally and financially draining disease and I laughed at the thought of Mason having it. I remember standing in the parking garage looking at the front of Children's that morning taking pictures of Mason in his car seat and trying to get the Hospital in the background. I wanted to remember this because "we were not going to need to come back here again." Now we walk in that same way at least once a month, as I did today oddly enough, and still think about that day every. single. time. The day that our lives changed forever. I stood there making a call to the family doctor to have Mason seen later that day...3:30pm to be exact..because I thought he had pink eye. During the sweat test, the technician said that we would have results by the end of the day and I responded with a "Great" because we were going to see the doc already. The whole ordeal at Children's last only about an hour from start to finish and we headed home with Children's in the rear view mirror.
Our first look at an all to common view now.
Heading into Children's for the very first time.
Sweat Test #1 at 3 weeks old on 9.20.10
3:30 came around and there I was in the waiting room of our family doctor, thinking to myself as Mason was fussy..."wow, I really am a mom. I am the lady holding the crying baby who just won't stop." I remember thinking how I was finally getting out of those new baby blues and really starting to connect and find a deeper love for this amazing little boy I was holding. I remember it taking Dr. Shallue a longer than normal time to come in but chalked it up to being one of the last appointments for the day. I remember her being not as chipper as she normally was but again just brushed it off. We talked about the eye and yes he did have pink eye and then I asked what the results were of the silly sweat test as if I "knew" the results were negative. The look in her eyes before she even opened her mouth let me know that I was so very wrong ripped my heart in two. "It is positive." I remember my heart racing, feeling hot, thinking this a bad dream and it was time to wake up. From then on it did become somewhat of a blur for a few days. All I could do was look at Mason, a sweet innocent little sleeping boy, who had done nothing to deserve this...Derek and I did this without even knowing we could. It just wasn't fair. She and I talked and cried together and i took probably another 45 min to compose myself enough to get out the door without looking like a total wreck. I sat in the car, called Derek at work, and could barely muster out the words "he has it." Not entirely sure how I got Mason and myself home from the appointment, I am sure whoever pulled up along side me on the road had to think "she is NOT having a good day." To make it feel like even more of a bad thing was they already set up an appointment with the Cystic Fibrosis clinic at Children's for the very next day...Sept 21st...the anniversary of my father and sister's death and Derek's Dad's birthday...seriously, could it have not been on a worse day?
We have come along way since that day. Those emotions are still raw as I type them tonight, but certainly not as much one year later. I guess you can say we have gone through the stages of grief and will continue to for some time. CF is tricky like that, things seem to be going good and then BAM, you get punched in the gut to bring you back to reality. We are in a much better place today. Mason knows no different and for some of it neither do we. We are used to the regular trips to Children's and the family doc and the daily routine of inhalers, enzymes, antacids, vitamins, and Vest treatments...oh add on another nebulizer treatment and antibiotic for these two weeks because of a cold now. Oddly enough the 13 day hospital stay and procedures had become "normal."
Anyone wanna guess how much money is sitting in this picture??? $3,923 to be exact (not including the $124 for the nebulizer cup and mask) This is a one month supply...no need to adjust your glasses that is $3,923 a month for one medication. Mason will be on this medication for the rest of his life! When he hits the current life expectancy for CF peeps of 37 years old (but we know he will more than double that number!) that medication will have cost the insurance company $1, 694, 736.00. It boils down to $65/dose or $130/day.
This is how we ended our day today. One year ago we were given the diagnosis of Cystic Fibrosis and one year later were given another med to help keep those lungs in tip top shape!
The time it sucks away from him and us playing together is hard, but we know it is worth it to make sure his lungs can stay as healthy as they can. Medication and treatments are the one thing, besides our attitude, we can control about this disease. I found a quote that very much sums up how I feel about this whole thing at the moment. "We don't know how strong we are until we have to be. " I can't give props to the owner because I know not who it is, but it is so true. Some days I keep going because I have no other choice. Don't get me wrong, there are still those sad "why Mason/Us" thoughts daily and tears at least once a week, but we are so very grateful to have been chosen Mason's parent's and are so very happy to have him in our lives so we put on that happy face everyday.
