2/28/09 - Anger

Today's update is # 51. A great deal has happened since that first posting on January 14th...we have gone through the lowest lows and have felt some great highs watching Alyssa fight back against strong odds. We haven't shared everything with you, but have always tried to keep you informed as to the major details surrounding this horrible disease, HUS, and its impact on Alyssa and to a smaller degree, our family.

Tonight's update will have a little different tone to it. In her 1969 book, Elisabeth Kubler-Ross introduced her Kubler-Ross model relative to grieving. Although we usually associate the concept of grieving with death, it can also be applied to other major/catastrophic changes that impact our lives. As a reminder the five steps are:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

Personally, I didn’t have time for Denial as everything was happening so fast. I also skipped Anger and went directly to Bargaining, after being told that Alyssa might not live through this. I’d have made any deal, and still would, to ensure a good outcome for Alyssa. Depression, well, that's popped in and out since the start; and Acceptance – sorry, none of us are ready for that!

So Anger is where I’m at now. Angry that this horrible disease, which thankfully strikes so few individuals, somehow found my daughter. Angry that her life will never be the same again. Angry that she rarely feels at peace anymore, worrying about what lies ahead. Angry that she needs to spend parts of six days a week attached to machines. Angry that she may need to be on some form of dialysis for the rest of her life. Angry that at 21, she should be out enjoying life to its fullest, not stuck at home too weak to move. Angry that when she finally does get out, she barely has the energy to walk into a store and back to the car. Angry that many of her so called “friends” have slowly disappeared (but also very thankful for those that have provided her with much needed support.) Angry that important tests were not performed early on that might have changed her outcome. Angry that I can’t find the right thing to say when I find Alyssa and/or her Mom crying. Angry that we don’t all wake up to find this nightmare over with.

I’m angry, but I’m also very thankful for all the incredible support that Alyssa has received from family, friends, strangers, and especially from her team of physicians and nurses that have worked tirelessly to help her.

I promise that # 52 will be void of any overt anger. Anger is a wasted emotion, but one that we all need to use at times so that we can move on. Thanks for allowing me this opportunity to vent.

dd