Chapter 9 - Acceptance

I cried a lot for the rest of that afternoon. But then I tried to be rational by thinking, nothing had really changed from the day before. Everyone had been already accepting and treating her as if she had ARPKD. It was supposedly "official" after the biopsy. But not in my mind. So I just now had to accept it, and do all that I could to get her the best possible medical care that was needed. I was also still coming to grips with how this would affect our plans for any more kids. We had always planned to have 2 kids. But now knowing that each pregnancy has a 25% chance of being ARPKD affected, that has really given us something to consider. The risk seems so small with the odds in our favor. But we "hit it" once on the first try. The reality is that there are a lot of families out there that have more than one child affected with ARPKD. Although we can not even begin to imagine what our life would've been like without Cyann, I don't know if we are strong enough to handle 2 kids affected with this disease. (emotionally, as well as financially) It's a decision we have yet to make conclusively.

Cyann's last doctor's appointment of 2003 was in early November, which was with Dr. Silber. (liver doctor) He mainly just wanted to follow up with Cyann from when she was in the hospital. The only thing really unsettling was that he told us to be on the lookout for Cyann to start throwing up blood when she was around the age of 5 or 6. He said it may or may not happen. It has to do with the fibrosis on Cyann's liver. As that gets thicker, the blood will not be filtered properly, and may back up into the esophagus. (I'm still learning about exactly what the liver involvement is with ARPKD, so forgive me for sounding sketchy.) Anyhow, Scott & I left that day feeling a little like, we have a long, bumpy road ahead that may get much scarier before we can really relax.

After this appointment, it was the holiday season. But it was also a very edgy time for us. The weather and the holiday spirit kept triggering a lot of deja vu from the year before when Cyann was getting sicker and sicker. We tried very hard to get into the spirit of things, if only to replace the old memory of Cyann's first Christmas with a new, happier memory of Cyann's 2nd Christmas. Inside, I felt like I was holding my breathe, almost preparing for something to go wrong. But, thank God, no major incidents.

I was really starting to come out of that 'dark place' that I had lost myself in, when a new "obstacle" came up: I was laid off of my job of 12 years! The first thing I thought of was, 'oh my god...what about Cyann's health insurance?' The COBRA payments were outrageously expensive, but we had to have insurance, on Cyann at the very least. Luckily, we were able to get her on Kids Care, and that has been our saving grace. Once the insurance on Cyann was in place, I started to relax more and more. I was still concerned about our finances, and wondering where I would end up working at next. But in between sending out resumes and filing for unemployment, I was able to spend so much time with Cyann! I was able to wake up with her, take her to the park, to storytime at the library, actually play with her during her baths, and put her to bed. I was finally able to be her mom for the first time since she was born practically. And I was able to catch up on my sleep! For the first time in almost 2 years, I started sleeping 8 to 9 hours every single night! The nightmares had stopped, so it was restful sleep again, too. I started to realize that maybe this layoff was really God's way of 'forcing' me to take a much needed, long overdue rest. Since I always felt trapped at work because of the insurance, I never would have left on my own. But now I see that all the time spent away from my family was no where near worth the burnout I put myself through to hold onto that insurance.

Another "gift" from the layoff was when I contacted Dr. Haws and asked him if he could connect us with other families who have kids with this disease. It was during a rather heated discussion, with a longtime friend of mine from high school, that I was trying to explain how I really felt a lack of support when it came to others understanding how Scott & I feel. And she pointed out to me that, of course no one would understand, unless they have gone through it just as we have. That's when the lightbulb went on. I decided to find others who were in our same situation. Only other parents of ARPKD-affected children could have an idea of how much panic we go through at even the slightest hint of sickness coming on in Cyann, even if it's just a 'normal' cold. I hope that someday that panic/scared feeling is replaced with confidence in knowing that Cyann will be just fine. But so far, for those first few moments after realizing that 'something isn't right', both Scott & I tend to want to rush down to PCH. I guess it's better to overreact than to ignore.

So here I am today. I was able to return to my old job just before my 90 days were up, so I am quite thankful for that. But more importantly, I am grateful for the lessons I learned while being unemployed about what is truly important: quality time with my family. Scott & I have been very lucky to have never had Cyann stuck at a babysitter's for hours during the day. Our schedules worked so that one of us has always been home with her from day one. I realize that it's not always possible for parents to avoid needing a full time babysitter. And unfortunately, someday we may be in the spot where we have no other choice as well. But for now, we do all that we can to not need a babysitter. And yes, we do have to sacrifice. When you look around our house, there isn't 'brand new' anything! We have 2nd- and even 3rd-hand furniture, tv's, clothes, etc. We have older cars with high miles, as well. But time is such a precious thing! And, on the selfish side, I would hate to have missed all of the 'milestone' moments, only for the babysitter to be the one who got to enjoy them and then tell me about it.

The time off from work also allowed my husband and I to start working together on this website that we've always talked about doing. There are so many people we would like to acknowledge (please see our Thank You's page) and to share any news and pictures with. We are still in the learning phase of this disease, so please keep checking back to read any medical updates we may be able to pass on. For any comments or suggestions, please email at the address found on the Contact Us page (which is under development).

Thank you for your time in reading our story.