I am the first born girl to my father, Church Music Director Hans Jürgen May, who inspired me to this beautiful music. He may not know I remember… but I do. I was a young girl when he left. About 11? Maybe younger. Then I did not see him again until I was 35….Then again years went by….then I saw him in 2015…and then never again. We have had our struggles since he left me as a young girl….
But I love him and I miss him and I remember everything. I remember blueberry picking, I remember the smell of his soap, I remember teachings on the fat white tired bike teaching me how to ride, I remember first day of school and my beloved first red leather Schulranzen (backback). I remember me riding on his back as he pretented to be a horse, I remember being loved by him.
I also remember sneaking out of my mother’s house to walk miles across town to see him…only to be punished and beaten by my mother when I returned home…she found out where I went. I got used to the pain and kept sneaking out….but one day my father stopped coming for me…stopped allowing me to see him. My world changed forever….still I never stopped yearning for him and his love. I prayed everyday he would come for me, he never did. He told me once years later “I stopped coming for you because I thought it would be better for you and stop the struggle.”
No it never did…it left a deep wound…which never healed.
I remember my father playing the organ at church in Germany and the piano at home. To this day, I crave hearing the organs play at the old churches in Europe…and most certainly they will always make me tear up…
“The same chemicals were used in the cooking as were used on the composition of her own being: only those which caused the most violent reaction, contradiction, and teasing, the refusal to answer questions but the love of putting them, and all the strong spices of human relationship which bore a relation to black pepper, paprika, soybean sauce, ketchup and red peppers.” ― Anaïs Nin
Churchill said: “There’s something, about the outside of a horse that is good for the inside of a man.”
I agree, having our horses and horse community /family, old and new, has saved us. Especially Emma who has gone through so much and still is. Once you hug your horse and smell them and breathe with them, all other worries in the world disappear. Horses are magical and I feel honored to be blessed with the presence our horses to carry me…to carry my daughter, to be so patient with us, to make us smile, cry and worry. At every end of the day we rejoice and are thankful!
Wegener’s Granulomatosis is a multi-system disease, which means many parts of the body may be affected. The nose, throat, lungs and ears usually become swollen and inflamed. The kidneys can be involved, too, while for some people it affects the eyes and skin.
Wegener’s granulomatosis is an uncommon disorder that causes inflammation of your blood vessels, which in turn restricts blood flow to various organs. Most commonly Wegener’s granulomatosis affects your kidneys, lungs and upper respiratory tract. The restricted blood flow to these organs can damage them.
Besides inflamed blood vessels, Wegener’s granulomatosis produces a type of inflammatory tissue known as granuloma, found around the blood vessels. Granulomas can destroy normal tissue. What causes Wegener’s granulomatosis is uncertain. Early diagnosis and treatment of Wegener’s granulomatosis may lead to a full recovery. Without treatment, Wegener’s granulomatosis can be fatal, most commonly from kidney failure. Emma was diagnosed late and her kidneys are affected.
Before reviewing the various symptoms, please remember that not all of them are experienced at once. It may be overtime that you or your loved one will have to experience one or more of the symptoms. Each WG patient is unique and may or may not experience these in the same order. It took a grueling year for my daughter to be diagnosed!! God saved her live, if any more time had gone by before she was diagnosed, she may have died.
Signs and symptoms may develop suddenly or gradually.
Constantly runny nose
Sinus pain and inflammation (sinusitis)
Coughing up blood
Shortness of breath
General ill feeling (malaise)
Joint aches and swelling
Eye redness, burning or pain
Double or decreased vision
Weakness and fatigue, possibly associated with low red blood cell count (anemia)
THANK YOU for your continued support and being here to read my blog.
You can read more about my daughter’s journey HERE