Wednesday, March 5, 2014

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.


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.


  1. I enjoyed looking in the mirror with this post. You are a great writer Susie. Life is the journey.

    1. Thanks Chaney. It feels good to write ones thoughts and share it. xoxo