chiari angel

chiari angel

Wednesday, May 6, 2015

Chiari and so much more...

May is Ehlers Danlos Awareness Month. Watch the video above and learn about all the related conditions that often accompany Chiari Malformation. There are many.
One of them being Ehlers Danlos Syndrome.

I would like to thank my friend Abby Long for creating this beautiful informative video and for including Ryan in the photos.

God, I pray for those who are suffering and those who we have lost. I beg of those in the medical profession...Do not ignore your patient's symptoms. Because they can be varied and many. Medical Zebra's do exist. It is your duty to figure it out and save lives. Isn't that why you chose a medical career?

Tuesday, May 5, 2015

Time stands still.

I've lost track of time. It will be two years on May 12 th that Ryan was diagnosed with the hell that is Chiari Malformation. Then the three months of pain, fear, doctors not listening or trying to save my son's life. I was going to write about what happened after the kidney transplant. Honestly I don't care to talk about it anymore. But I will say this. I was having heart issues just hours after my transplant. At the exact same time just a few steps away my husband was having a heart attack. The doctors were opening up his chest at the same time my heart was being shocked back into rythem. Ryan's death nearly killed us both. They gave my husband very little chance of making it through the night. Meanwhile I was lying in the hospital mourning my son and husband and thinking I would have to plan two funerals.

By some miracle my husband pulled through  for a second time in two weeks and even surprised the doctors. Now..neither of us will ever be the same as when Ryan was alive. This is our life now. The world looks different. Grey , scary. Ryan..our only son. Hopes and dreams lost. A senseless death.

I suffer with severe Post Tramautic Stress. No one warned me this would happen. I feel as though I can't breathe. I panic and get sick to my stomach. The longing in my heart for my son is just as painful as it was the day he died. I have resolved myself to this fact. The pain of having my child ripped away from me will remain the rest of my days. Death would be a relief. But I have unfinished business to attend to...besides being here to see my grandchildren grow up. I have to speak out for Ryan and fight for justice in his death. This is what enables me to put one foot in front of the other despite my disabling PTS and panic attacks.