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mamapinky0

Amiee. long post

mamapinky0
6 years ago

Another thread about meeting people prompted me to start this thread. I'm not sure where to start so I'll start at the beginning.Amiee was born 7/20/96...my beautiful and perfect grandaughter. However she was born with a very rare vascular condition *Parkes-Weber-Syndrome. ( not Sturge Weber or Klippel Trenauny) . Amiee was born with what looks like port wine stains with close to 100% coverage on lower back, buttocks, pelvic area, both legs and feet...this stain ranges from pink to blackish purple. Thru many testings we find Amiee has many many AVM's, she has many missing or malformed capillaries meaning the blood has to shunt directly from the veins and arteries causing a fast flow of blood..your heart is not designed to keep up with such a fast flow of blood indefinitenly. Currently we know Amiee has vascular malformations in the floor of her left pelvis, in her colon, anus, both kidneys, bladder, uterus, and wrapped around the sides and front of her lower spine. This strange condition is like a double edge sword as far as her blood goes she can clot today or next week bleed. Her insides literally look like spaghitti noodles tangled up. Pain is her constant companion. My husband *Mike* and I were in the delivery room while this grandaughter of ours was born...we took one look at her and honestly I felt my heart tighten with such unbelivable love...her father walked out of the room, her mother turned away and said *give her to her grandparents* my mind was screaming** WHAT ARE YOU DOING** OMG, Mike and I left the hospital days later with the love of my life....my Daughter.

We've had Amiee to Boston Childrens hospital, The Cleveland Clinic, The Mayo, Hersheys Medical center, Pittsburgh Childrens hospital where she currently sees 9 different departments of speciality care. Amiee can not be fixed, there's too many vascular anomalies. All the doctors can tell us is she will eventually bleed out internally as the walls of her arteries become thinner and thinner or her heart will just become to tired.

Amiee is strong, her self confidence is astounding..she has never let Parkes-Weber define who she is. She was the lead model for Rue21 in our local mall for 7 years often strutting her stuff in shorts or other clothing that she loved never even thinking others would see her legs she didn't think about it because she didn't care. Oh how she loved those modeling times, she would rest with her legs elevated for hours before hand, saving her strength, keeping the swelling down in legs that could swell horriably, and her poor feet that no shoe would fit once swollen and she would get out on the cat walk looking to all the world as though it was easy...see Amiee can only walk 4to 7 minutes on a good day...but she forgot about her pain just as she forgot about the port wine stains and carried on.

I remember how excited she was when she hit 9'th grade and could finially go to the school dances, she rode a wheelchair accessable van to school and ask another girl with no legs can you go to the dance with me..this other girl said no I cant I'm handicapped...that to this day has left a mark on Amiees heart as she says no one is handicapped unless they allow themselves to be...

Friends....there are none....the girls never wanted to befriend a girl with legs like Amiees expecially when parents drilled it into their children at a young age** don't get near her, don't touch her** Oh I cried a trillion tears, but never in front of Amiee. Once in kindergarden she was invited to a halloween birthday party the entire class was invited...it was held in a child's home. I was ask by the mother after we arrived if I could pick Amiee up in 2 hours...leave her...I sat in the driveway...I could see it all as it was outdoors...lots of costumes that had play plastic swords..I watched kids swing them around Amiee not hitting her as all the kids said eww don't touch me...I took my daughter home. I told Amiee those kids were not nice and the next time children are unkind to you you need to tell them ** you are not nice** Amiee responded with Oh no mommy that would be rude.

Amiee approched a boy in school she was in 9'th grade he Kody 10'th...that started a close bond, Amiee had a boyfriend. This boy spent the next 6 years spending many hours a week at my home, they played games, played cards, went to the prom, Kody carried Amiee all over the house...and how many hours he rubbed her poor hurting feet and held her head while she threw up when her pain got away from her...he would sing her to sleep and refuse to leave her side...he would spoon feed her broth, he planted a flower garden for her and called her his tulip. ..never for one moment did he let her suffer alone...6 years...than he walked away...because Amiee would not, was not ready for intimacy.....Amiee told me she understood that he has raging hormones and he could wait no longer....Kody however calls Amiee several times daily and occasionally sends gifts, he is seeing someone now yet continues calling Amiee...so she lost her only ever friend. Lately her aloneness has been troubling me much more...I have to step in and find a way for this wonderful and beautiful girl to meet people. Theres no doubt she will form friendships if she's around others as she's not shy and has a outgoing personality....well I sure did write a book and I thank you if you read all this LOL. I feel better tonight maybe because I vented.

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