AND THERE YOU HAVE IT

The truth! The whole truth and nothing but the truth.

I don't think I've spoken this out loud to anyone.

I wrote a little on Facebook about fear and how it keeps me going. I fundraise, I ask, I partake, I volunteer, out of fear. Here's what I put on Facebook...

I fear what CF may cause to my baby girl, I fear losing more loved ones to this disease, I fear belonging to that “club” of mother’s grieving the loss of their child;

but what I fear the most is…

Not doing my part for when we find THE CURE! With the love, support and on-going donations from people like you I know we will find a CF cure and not being part of that, not being able to boast about all your help causes me the most fear. 

Of these fears, I left the biggest-fear-of-all out...

What I fear the most (besides the fear of losing my child — that ones a given), is raising the most funds ever because I've lost my child.

There. I said it (or typed it), I put it out for all to know. I want to raise millions of dollars for the Cystic Fibrosis Foundation so they can find a cure for CF and I fear raising the most amount of dollars only after I've lost what I'm fighting to keep, my baby girl.

I know, I know–this sounds awful–and believe me, I keep these feelings tucked deep within – for the most part; AND it DOES NOT diminish the GRATITUDE I have for all that YOU DO AND HAVE DONE. I'm just sharing and being honest because I've seen it time and time again...families trying to raise funds and do a decent job, but it's only once their child has died that they get the most donations. SIGH!

Don't get me wrong, I get ecstatic about raising our $20,000+. Without the help, love and support from our family and friends (YOU) we would barely raise a few thousand.  I just don't ever want to be in that situation that our Andrea's angels team raises $250,000 because Andrea's earned her angel wings.

Does this make sense? Sadly, I think it does.

Empathy Overload

I shared on Facebook that I’ve had a bit of a sit back in regards to how I’m handling CF. It seems to happen any time I get sick. I’m coughing, hacking, expectorating and wishing it were done and over with. That’s when the sadness sets in.

I went to the doctor to get things checked out and was given a shot to calm down all the inflammation in my throat and I’m starting to feel better physically. Emotionally, I’m a wreck.

You see, when I’m sick all I can do is look forward to getting better. Then I think about my Andrea and my emotions run wild. I feel sad that she has to do so much to keep her lungs healthy EVERY SINGLE DAY. I moan during my two-week ordeal and then get better. CFers don’t get that luxury. They do all this stuff to stay better, but eventually get worse. How cruel is that? Way cruel!

I feel proud of my girl….her fight against this ugly disease and she does it with such grace. I sat in her room the other day and told her this, with tears running down my face. I told her how pathetic I felt that I complain about my colds, when she goes months with out a complaint about all the CF stuff she has to do. Of course, my sweet angel, consoled me and told me all would be fine. I cried more.

I work hard to handle CF in the most positive, productive way. I wake up with feelings of gratitude for all that we have and that I still have my girlie despite the death sentence CF has bestowed. I don’t allow that sentence to hang over my head. It wouldn’t be living if I did, but some days are harder than others and I falter for a moment (or two).

When I falter due to empathy overload, I start to feel sorry for myself. Yes,  I’m feeling sad with thoughts of all Andrea has to endure, but I’m also so overly emotional that I start feeling sad about how it all affects me. That pesky ego sneaks in and I don’t handle that well. I don’t want to feel sorry for me.

So family and friends came to the rescue. I asked for a pick-me-up and got it with wonderful posts, texts and messages sent my way. I got some pretty-funny, dirty jokes that truly made me laugh out loud. 

I asked for some help and I got it. I’m feeling better and ready for the new week. Thanks to all the lovies in my life that helped me snap out of my funk. You are ALL unbelievably WONDERFUL. Thank you!

Oh and FUCF!

TMI? Perhaps...

I get asked often, "How do you manage it all?", in regards to having a child with cystic fibrosis and another child born with hearing loss. And my answer is always, "How does one not."

I mean, to me, there is no other option but to handle the situation that life has brought you in the best possible way you can. The other option is to give up, pity myself and do nothing; and if you know me that was never going to be the option.

What I haven't told many people is the road it took to stay proactive when given horrible news like, "Mrs. Rider, I'm sorry to have to tell you but your son failed his hearing test and we have confirmed he has a 65% hearing loss in both ears." That call was difficult, but six months later I got another call, "Mrs. Rider, I need you and your husband to get your daughter and come to the hospital right away...tests confirm she has cystic fibrosis." Tears came gushing out after both phone calls but after the second phone call these words came out of my mouth, "Why couldn't it be just her hearing". How ones perspective changes depending on the gravity of the situation. Hearing loss sucks, but it's not fatal, so CF sucks more.

Back to the road it took to stay proactive...

When you're thrown into the world of fearing the loss of your child, the path one takes to become a survivor is different for everyone. For me it went sort of like this...

1. Cry, cry, cry and cry.

2. Wail!

3. Research, research, research.

4. Weight loss/weight gain

5. Doctor appoints galore = STRESS!

6. Cried the first time my husband and I made love after getting the horrific news. I felt like I shouldn't be allowed to feel any kind of joy.

7. Anger towards family and friends who tried helping by saying or doing things they shouldn't have.

8. Loss of friendships because I became more needy.

9. Depression.

10. Took my frustrations out on my family.

11. Fundraise for a cure.

12. Called doctor, admitted I needed some help. Was put on Wellbutrin. AWESOME!

13. Educate myself by attending CF conferences, and seminars on the deaf and hard of hearing.

14. Advocate for my kids and educate others about CF and the need for funds.

15. Join social media and made new friends. Both in the CF world and HOH world. (HOH = Hard of Hearing)

16. Read A New Earth: Awakening to Your Life's Purpose. This impacted the way I look at life tremendously.

17. Concentrate on not complaining.

18. Enjoy life NOW, TODAY!

19. Look for the beauty in all.

20. BE THANKFUL!

Of course it didn't go exactly like this in just 20 steps, but I hope you get the picture...that I hit the floor and fell pretty hard, but was able to get up and move forward, because I didn't give up. Steps 1 through 10 lasted about 3 years. It's no wonder I lost some friends. But when I finally got up and was stronger great things happened.

Do I fall now? Sure I do. I'm only human and will make mistakes, but I can honestly say I recover quicker from my falls and I own up to my mistakes immediately...

and I feel pretty damn proud about that.