NillaSwirl

I have 2 daughters who are terminally ill with Huntington's Disease. This Blog records my feelings and how I handle different situations; hopefully, others may be able to benefit from my experiences.

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Name: NillaSwirl
Location: Cottonwood, Arizona, United States

Tuesday, April 25, 2006

April 28th



My oldest Granddaughter turns 15 soon. Such a beauty, she is.

I remember the day she was born. Her mama had a rough time delivering her. We were all so scared. She was exhausted, yet she kept on working as hard as she could to give birth to her baby.

My granddaughter was born screaming and kicking...and when they took her to get her weight and vitals...she raised up in a crawl position...locked her arms and legs...and wailed loudly in disapproval. The nurses were shocked...then started to laugh and looked at us thru the window shaking their heads in disbelief.

I smiled and cried...viewing that beautiful little hothead...knowing she was mine.

Tudah...she has made my life. Grandpa and I would take her to the Library and read to her...she would go for walks with Grandpa...she, the continuation of my baby...

I visit Tudah and her brother Ditta regularly. Ditta always comes and hugs his Gramma and gives me those special kisses on the cheek. He's quite the little man at 11. He's very protective of his sister too.

I have been so blessed in my family. Thank you Lord...

Tuesday, April 18, 2006

Mother's Ring




My 53rd birthday is Friday. They all put in together on the most beautiful Mother's Ring I have ever seen! The gems are exquisite, the arrangement so perfectly done. The setting is unusual...and dainty...not like most Mother's Rings are done.

There are four stones in the setting...3 represent my birth children...and the one set so beautifully in between...is of my sister's birth child...but she is mine, in every other way. She was raised right along side of my three. She's called me Aunt Mom for years...now, to my delight...she calls me Mom.

This is a special Mother's ring...for it represents everything I hold dear. Everything I have lived for. My children have always given me the strength to continue...to push on when I thought I had nothing left to give...I will cherish this gift as long as I live; for I will ever be reminded of their love, beauty, courage and endurance thru their difficult lives.

Thank you my babies...

Thursday, April 13, 2006

They Don't Hear Me...



He lives in an assisted living facility. He's been there for the past 6, or 7 years...since our divorce.

I hated myself for a long time, for leaving. Our marriage wasn't a happy one. For 27 years, I was miserable. Physical abuse, mental anguish; I used to think he hated me. So many times he left me and the babies...only to come back and start all over again...each time he came back was much harder...on me and the girls.

His selfishness...his wants...intensified as Huntington's progressed. So did the power in his fists.

His demands carry over on our daughters. Their stress level is so high. Constantly calling them. Demanding that his material needs be satisfied. They're at his becon call...and I can't stop it...because they feel guilty.

They feel guilty because he's sick...because he's their father...because, one day...not too far off, they will be in the same condition.

NO daughters...you will NOT be in the same condition. None of you have ever been selfish...none of you could leave your babies at a whim...none of you are capable of cruelty...Huntington's will effect you differently!

THEY DO NOT HEAR ME...................

Friday, April 07, 2006

My Baby



I talked with my youngest Wednesday. She started seeing a counselor. She asked me not to tell her sisters. I guess she doesn't want to worry them. She told me how she had been feeling and, how she seemed to be struggling in life these days. Her loss of concentration, her ability to focus.

My heart froze. I choked back panic as I told her that I will be here...whenever she needs me. I have tried not to think of her having the illness as well.

I asked her if she had intentions of being genetically tested for the illness...she said, "Mommy...I can't handle the outcome if it's positive right now". Dear Lord, I so understand that.

My daughters are more courageous than I. I observe them all and they seem to empower my spirit. They fill me with such pride and adoration!

My babies...how beautiful...how faith inspiring...how precious! I love you...

Wednesday, April 05, 2006



We all gathered for her 33rd birthday. She was all smiles. I was contented and relieved to see her participate with such a positive spirit. She was emulating such beauty. Her soul seemed to feed upon the essence of love surrounding her.

Swan called. How she is sadly missed. She wants to be here with us. We need her here. She is such a very important part of us. All we can do is pray...and wait for her return. Swan...we love you...

As the days turn into weeks, and augment into months...that will mature into years...I praise my God; for He has blessed me...in knowing my children and giving them the strength to endure...